Julie Olsen's Journey: Operation Kick Cancer's Ass

Be vigilant! Know your body. Check yourself.

2012-01-28T18:36:00.000-08:00

I have less than one percent breast tissue remaining since my bilateral mastectomy when my breast cancer journey began. However, that tiny percent of tissue is still at risk so I do monthly breast self exams every month. Truth be told, I do it a lot more frequently than that because the type of breast cancer I had (triple negative breast cancer), is very aggressive (grade 3) and grows incredibly fast.

Whether you've had breast cancer or not, if you value your life on earth in any way, I hope and pray you're being vigilant and getting to know your body well enough to know when you feel something that is new or suddenly different when conducting a self exam.

As a survivor, I don't take chances with anything unusual that I feel. Thankfully, all of the unusual lumps I've found thus far in my post-treatment phase have turned out benign but we've removed a few to have them tested to be sure. It happened in October and I had a lumpectomy. I found another lump shortly after Christmas and have had a ultrasound and a MRI to take a closer look and it appears to be the same type of benign mass that they removed in October but since the only way to be certain is to remove it, it will be taken out when I have a revision reconstructive surgery mid-March. The doctor is not concerned about waiting until then since that's just 6 weeks away and the MRI results indicate a benign finding - praise the Lord!

Each time I feel something like that I go through a battery of visits and tests to figure out what it is and while that is annoyingly inconvenient and expensive, it is a necessity to ensure I continue to dance with NED (no evidence of disease). It's a small price to pay for longevity and I'm willing to pay it.

Friends, please be vigilant with your health. Don't ignore signs of trouble. Don't delay, forget about or willingly choose not to perform critical self exams. You are loved and you have a purpose here on earth so please don't contribute to cutting your own time on earth short. If you haven't done a self exam in a while - do it now. Please.

Here are some links that provide instructions on performing a thorough breast self exam --

American Cancer Society - Breast Self Exam

BreastCancer.org's 5 Steps to a Breast Self Exam

May God light your path wherever you go, bringing you peace, joy and love. May He heal your body, heart and mind of all that ails you, restoring you to who you are meant to be. Be kind to yourself.

Love,
Julie

Double whammy - strep & sinus infection!

2011-12-18T17:19:00.000-08:00

It's been too long since my last post and I'm sorry I've been silent here. I have a post in draft but haven't been able to take the time to finish it. Thank you for the sweet reach-outs checking in on me - your care and concern mean so much to me. So here's a quick update.

It's been a very busy autumn; I've had lots of work projects, plus a fun new pink wig warrior project, for which I've been putting in lots of extra hours. I love the challenge and stimulation of these projects but I have not done a great job getting the rest and exercise I need to keep my immune system strong.

Cooper has been sick a couple of times and each time he's passed it on to me so I've been sick a couple of times all in the last few months. This current bout has been brutal. I've been in agonizing pain since Thursday night with a screaming sore throat, pounding head, aches and pains from head to foot, and a fever that just wouldn't quit. Friday morning at urgent care the doc said it was a virus but didn't test me for strep. Told me to go home and rest and keep up with the over the counter fever reducing pain meds.

I've been alternating ibuprofen and acetaminophen around the clock, neither even touching the pain, so last night I broke out the "big guns" and dipped into the left over Percocet from my big surgery over the summer and THAT didn't even help! I've been in bed since Thursday night, only getting up to use the bathroom, grab some tea or a snack, or say good night to Cooper, or head to urgent care.

This morning I went back to urgent care since I wasn't getting better and couldn't find relief from the throat pain. The doc took a look at my throat and ears and said I have strep AND a sinus infection - didn't even need to test me. He called in a high dose antibiotic and a cough syrup with codeine. I hope these work quickly to get me feeling better because Bob has to go back to work soon and then I'll be juggling Cooper, the animals, and work all on my own again. He's been so wonderful - taking care of me and Cooper all week and weekend. I'm so blessed and lucky to have such a caring husband. Thank you, Bobby! xoxo

I sure hope and pray that I am feeling a lot better tomorrow and throughout the rest of the week. There's much left to do to finish up work commitments and prepare for Christmas next weekend. Our new treadmill (which Bob and I gave each other for Christmas) will arrive later this week and when it does I'll be incorporating daily exercise into my routine to get me back on track with diet and exercise efforts. Exercise is so important for reducing one's risk of recurrence and also for the immune system overall. Besides, my clothes don't fit! LOL I need to lose about 12 lbs before my next reconstructive surgery mid-March. More about that later.

Dear Lord, my healer, my redeemer, please heal my body quickly and effectively so that I may resume plans to celebrate and serve You. Please allow the medicine to quickly eliminate the infections and bring relief from the pain so that I may tend to my boy and my work with energy and joy. Thank you, Lord, for sending me such a caring and attentive husband and for giving him the patience and will to take such wonderful care of me and our son while I have been ill. I'm so grateful for your mercy and love. In Jesus' name, Amen.

Frequent surgery "flyer" miles, please!

2011-10-28T12:02:00.000-07:00

All week long I was sure I was having surgery today. Last Friday it began at my check-up with the surgeon who performed my my bi-lateral mastectomy in 2009 - because last week I felt something suspicious in my left breast (details in previous post). When she said she wanted to take it out she said "how's next Friday for you?" so then Friday was on the brain. Her assistant later handed me a sheet of paper that had Thursday's date. I didn't notice that date corresponded with Thursday (not Friday). I got a call Wednesday morning from the UCLA surgery center to confirm my surgery for the following morning. "What?!" LOL I fumbled through my paperwork and there it was. Oops.

I checked in with the surgery center earlier than my call time because lately L.A. traffic has been worse than usual and I nearly missed my biopsy appointment on Monday due to awful traffic (a 30 mile drive took me 2 hours!). They took me in right away though and my surgeon was ready to go so I got to get in quickly, not before asking the check-in clerk to credit me with some "frequent flyer" points. OK OK so they don't award those but she smiled and replied "sorry, we're fresh out of those today."

In pre-op, I did the usual and tried my best to make everyone laugh and smile. I firmly believe that surgery goes smoothly and we're set up to be surrounded by the best possible energy when we connect with our care providers in a positive way. I have had umpteen surgeries in the past two+ years on this journey and my blog followers know it's paid off for me so I'm sticking with that philosophy. :)

It was a quick surgery, one hour, followed by an hour of recovery. I had general anesthesia for this lumpectomy. By the way, I never imagined I'd have a lumpectomy once I had a bilateral mastectomy over 2 years ago. However, it's an important reminder to all that even mastectomy surgery can not remove ALL breast tissue and about 1% is left behind. And, if you have reconstruction involving transplanted tissue (fat) like I had in June, that tissue also needs to be examined for abnormalities as well.

When I woke up, my surgeon informed me she is 99.9% sure that the benign biopsy results will be confirmed by pathology now that she's seen and removed the lumps. She said she's sure it was fat necrosis (dead fat) which makes sense given the timing and nature of my last surgery.

I was actually able to walk out of the hospital (first time I've done that after all the many surgeries I've had) on my own without a wheelchair assist and Bob drove me straight to Starbucks, followed by Whole Foods, so I could get my organic soy latte and something from WF's gourmet hot bar for lunch. I'm so blessed that anesthesia doesn't make me sick to my stomach and I can eat right away. :) Amazing blessing that is!

I'm home recovering well. No major pain. Just a little sore and tired. I'll be at church on Sunday and back to work on Monday. God is sooooo good!

Thank you for your prayers and well wishes!

Oh, and one other thing -- Bob surprised me this morning with the news that he nominated me and I was chosen as a finalist for an incredible survivor victory challenge contest!!! I'm one in three finalists! Will you please consider voting for me (by midnight Monday - winner to be announced on Monday)? Here's the link:

Please click here to vote for me in the Otterbox Survivor Victory Challenge

Thank you so much - and please, if you're inclined to do so, I'd appreciate you passing the link along. Our house and morale could use the TLC after two years of focusing our energy and time elsewhere (obviously).

Love and blessings,
Julie

BENIGN!!!

2011-10-25T23:03:00.000-07:00

My new favorite word: BENIGN

My surgeon called this evening with the biopsy results: "Julie, I have very good news - it is scar tissue." That's when I fell to my knees and sobbed tears of joy and praised God aloud over and over. Doc heard me crying and must have thought I misunderstood her as she reiterated that it was good news haha and I told her I was so happy I was crying out of sheer joy.

With that news out of the way she reminded me that we still need to take it out so it's not left there to turn into something else which apparently can and does happen. Surgery is still on for Friday morning. Fine by me.

Thank you so much for your prayers and well wishes, making me feel so loved and cared for no matter what the outcome was going to be. God is so good, blessing me with such amazing friends and family. I'm incredibly grateful.

Remission continues! =) Praise God! What a relief that the remission clock doesn't need to be reset.

Like my three year old son, Cooper, has taken to saying lately "that was a close one!" and "ay ya ya ya ya!" ;) When he saw me crying while laughing tonight he said "Mommy, you're funny, I love you." I love you too, Cooper - more than you could ever know!

Dear Lord, my creator and ultimate healer, I praise and thank you for the countless "second chances" you bless me with. My gratitude is immeasurable and my love for you infallible. You brought me back from the brink not just once, but many times and you work through me in ways I never imagined possible. Lord, I ask you to wrap my warrior sisters in your healing light and love - take away their pain and fear and instill a sense of peace and confidence that Your will shall reign for the greater good and that You will provide comfort and healing of all that ails and troubles them. Lord, I ask you to bring forward the cure for the wretched disease of cancer that plagues us. Show us the way to eliminate the toxins and dangers brought about by greed, selfishness and other evils that Satan thrusts upon us with the false promise of empty "wealth" and "convenience". Lord, use us survivors to spread your good news and to help our sisters through this difficult trial in their life and show them how they're loved and valued the way I have been loved and valued through my journey. Help us to keep paying it forward, Lord, delivering hope, laughter, and faith in Your name. In your son, Jesus' name, Amen.

Blessed, and dreaded, fear

2011-10-22T22:18:00.000-07:00

Breast cancer: the "gift" that keeps on giving. Whether it's treatment side effects, surgical scars, or the emotional roller coaster without end - the fear comes and then goes and then comes 'round again. I can't say that I've had a day where I haven't thought about it - not yet. It would be nice to not think about it but I doubt that day will ever come, and perhaps that is as much a blessing as a curse.

For now, it mostly is there in the back of my mind and comes into the forefront when I have a nasty hot flash or when my arm swells and feels gunky from the lymphedema. The flashes had begun to really slow down until I was on vacation in the hot and humid Florida sun and enjoying a refreshing beverage each night (wine, beer or margarita) and before getting half way through a single drink I was breaking out into an intense wave of heat and sweat reminiscent of the early days of surgically-induced menopause (read: BRUTAL). So there it is - alcohol is a major trigger for my hot flashes. It's a good thing I don't drink much or often. The high heat and humidity also aggravate the lymphedema which really stinks since it also makes it unbearable to wear the compression sleeve that should help manage the amount of swelling in the arm. I end up tearing it off for some fresh air relief. It was so hot all summer here in the Santa Clarita Valley of southern California that I hardly wore the sleeve at all and now my arm is a bit puffier than it should be so I'll need to get some of that intense therapy that requires it be bandaged up for 24 hours for a 2 week period. I'll wait till the weather is cooler though - it's still in the upper 80s here believe it or not. I welcome the cooler weather, not the round the clock bandaging.

If it's not my own physiological reactions relating to treatment side effects and surgeries, there are reminders all around like things I can't do anymore - no more spa days since I can't go in a hot tub, sauna or steam room (aggravates lymphedema), and I learned this past week that I can't do the challenging spinning exercise classes since I can't put pressure on my arm/hand such as when the class is instructed to do stands or "jumps" or lean-ins that require a firm grasp and leaning with the arms and hands on the handle bars. I'm not terribly sad about these lifestyle changes most of the time but as they arise they serve as reminders - reminders that at times are unwelcome moments of frustration but praise God that most of the time they are reminders of what I've overcome and that I'm still here, living life!

The blessing of the fear that pervades my consciousness is that it serves to remind me to cherish every moment, to live life to the fullest, to not sweat the small stuff. Even though I've been on this crazy ride, I seem to still need reminders often so I guess that's why I'm showered with them!

The fear of recurrence is the worst of all though. I try not to think about it but this week it took center stage as I returned to the UCLA Revlon Breast Center for a follow-up appointment and was faced with my surgical oncologist's different opinion from my medical oncologist's feeling about something I can feel in my left breast (which of course is mostly made up of belly fat at this point but I guess that tiny bit of breast tissue that's left behind after mastectomy still presents a risk). I wanted her opinion but my heart sank when she quickly determined "it needs to come out". Um, what? Yup, whatever it is that we can feel needs to be biopsied and removed and biopsied again because the booby masher and ultrasound tests I endured shortly after hearing those words were "inconclusive". Shoot. Crap. Boo! Trick or treat?! Blech!

Dear Lord, I submit to you my life for Your will. I lay my worry and fear at Your feet and trust in You. Please guide the physicians and nurses minds and hands to ensure accurate and clear results and provide for my safety and comfort while in their care. Please grant me acceptance and peace with whatever the outcome may be. But Lord, please let it be benign. Amen.

Cleared for take-off (exercise), ready-set-go!

2011-09-29T20:50:00.000-07:00

I was finally cleared to resume normal activity and exercise since the big surgery. That was a couple weeks ago though and I have yet to break a sweat from anything other than cleaning the house. Yikes. What in the world am I waiting for - studies show that regular exercise - elevating the heart rate for 30+ minutes 5 times per week - is the most important thing a cancer survivor can do to reduce the chances of a recurrence.

I've remained committed to eating healthy, consuming immune-boosting foods and supplements daily, but I've been remiss in ensuring I get enough sleep and exercise each day. That needs to get fixed now.

Starting tonight, I need to commit to getting to bed earlier so I can wake up earlier and start each day with a sweat-breaking power walk with my little man.

Dear Lord, please help me to submit to your will and honor the body you have given me and have miraculously healed from the brink. Please grant me the wisdom to focus more productively during the day and early evening to get what needs to be done early enough, to help me avoid the temptation of Facebook and other sources of entertainment that keep me from achieving my important goals. Thank you, Lord for the countless blessings and miracles in my life - for giving me another day - for bringing me this far. Amen.

That shower was AMAZING

2011-07-08T13:01:00.000-07:00

On my quest to allude my husband's understanding, I have stumped him once again with the proclamation that the shower I just took was better than a tropical vacation. No, really. He still doesn't believe me. I can't say I blame him since I'm the gal that loves camping and often pretends I'm camping at home by seeing how many days I can go without bathing. I'm not really gross, I'm just really busy LOL. It's not intentional, really. But, life happens and I have a 3 yr old and a spouse that's away most of the time and I work full time so my top 5 priorities don't include bathing. My apologies to those around me.

However, typically 3 days is my absolute limit. As in, on the third morning I can't stand the smell of my own self and just make sure a good scrubbing down occurs no matter what. I don't always wait till the third day - in fact, most of the time I shower every day (fear not, my colleagues LOL). Weekends, however....oh nevermind.

My point is this - after surgery I was not allowed to shower till those drains were out. They finally came out yesterday, praise God!! But, even though they were out, I had these gaping holes in my belly and my side that were screaming they needed till morning to plug up before being put under water. So just now, I had the most AMAZING shower. I don't know how long I was in there but it's probably the longest shower I've ever taken. When I shower usually I take like 5 minutes - I'm a mom! Get in, do your thing and get out and get going! Today, not-so-fast! I'm pretty sure I put that scrub puff to every millimeter of my body, scrubbing the grodiness and just loving every second of the water pounding on me. Oh, thank you Lord, for my big showerhead and organic body washes and hot water. Ahhhhhhhhh.

Oh, how long was it since my last shower, you ask? 10 days. Yeah, that's just gross. LOL

DIEP FLAP Surgery & recovery

2011-07-04T15:02:00.000-07:00

It's so unlike me to have so much time pass since surgery - nearly a week ago now (6/28) without a blog post. Every time I thought about blogging about it I began to get sleepy and fuzzy from the morphine and decided it was best to wait until I had a clearer mind. But, the last time I delayed blogging about the results of a surgery it was because I was mortified about the results and didn't want to face it or admit it. Praise the Lord this time it purely was a need to find a concentrated amount of time that I'd be awake and alert enough to give a coherent report.

Last Tuesday I was driven to UCLA at 4am by my dear friend and neighbor, Clare. Thank you, Clare! You are an angel and made Bob's day so much less stressful by allowing him to stay home and keep Cooper on his normal morning routine, getting him up and fed and off to daycare at the normal time before heading to the hospital. Yup, my call time was 4:45am even though my surgery wasn't until 7:30am. Once I was in the pre-op area, things moved slowly and really caused me to wonder why they drag us out of bed so early when their staff aren't ready to move things right along as soon as we arrive. Then I remembered how wonderful every surgical experience has been there (and I've had MANY) and thus they are the experts and know what they're doing so I should stop questioning and analyzing every little process. I just can't help myself though - that's what I do for a living (improve processes and service delivery) ;). Part of me reverts to analyzing things from that perspective due to it being my job at work, but I think I jump into that mode quickest when I'm nervous.

Why would I be nervous? I haven't been nervous for most of my surgeries. In fact, I think the only one I've been nervous about was the first one when I was saying goodbye to my natural breasts in June 2009. A bittersweet farewell since I was thrilled and anxious to get that cancer out of my body but knowing that my life was forever changed with challenging treatment and odds to overcome ahead of me so then it wasn't so much anxiety about the surgery itself but rather the fact that the surgery was step 1 of a long haul I was about to endure. This time, I was truly nervous about the actual surgery, for weeks leading up to it. I knew in my mind why I was doing it - to improve the way I look and feel after the radiation screwed up my left side reconstruction - but I had gnawing doubts and worries that I would still be unhappy with the results afterward and regretful that such a major surgery (with all the related risks) was done for a cosmetic purpose. What if something went wrong and I had put my family's stability in jeopardy for something that was not absolutely necessary? Every time my mind "went there" I would redirect it back with reminders of how my body felt - jacked up, clamped down upon, uncomfortable 24/7, sometimes painful, and how I looked - deformed, asymmetrical, and damaged.

But for the weeks leading up to the surgery date, my mind was a battlefield firing back and forth about these points of view until finally, the final week and days before the 28th, I found more peace than ever about it upon praying for such peace. It helped immensely to hear the opinions of my dear friends who have been through breast cancer and reconstruction and they agreed that I had a right to feel as normal as possible and certainly to be without the discomfort I was experiencing, and to get the best aesthetic results possible. And if the flap operation was the only way to do it then that's what I needed to do. My survivor friends who are also work colleagues helped me get over the feelings of guilt I was having about doing this during our busiest time of year at work by reminding me that it will always be busy at work and I lined up my coverage and am honoring my family (who must come first) by doing this now before the new health insurance plan year would start so that I could avoid incurring another $3,000 in debt since we're still paying off medical bills from the FY11 plan year. I thank you, my friends, for helping me find the peace I needed to have before entering the OR last week. Amanda, Jessica, and Michele - thank you so much for standing by me and helping me on my journey while you are still walking yours.

I swallowed my fears and turned on the humor as I went through the maddening question factory with every hospital staff member that came to talk to me. Confirming my name, birthdate, UCLA ID number (which sadly I use more frequently than my SS#), and then I'd look for a new way to get them smiling so they'd have some connection with me in the OR when I was opened up and vulnerable. No, I wasn't expecting to have a deep connection with them, but I firmly believe that a positive connection of any kind with your healthcare providers is critical to the successful outcome and my approach to surgery has worked every time. They often ask me what kind of music I like (even though I won't hear it) and when they do I tell them I like whatever makes them feel happy and effective. They always ask me to confirm what procedure I was having and this time I'd tell each of them I was having the DIEP flap on the left side with decapsulation/elimination of the implant, aka "booby mulligan" and that usually got a laugh or at least a smile. With Dr.C I already have the connection established. He's a compassionate guy and really cares about patients. When he came to talk to me to go over the procedure and ask me if I had any questions I immediately focused on telling him I have no big questions that he hasn't already answered and that I have faith in his abilities and that God will use him to bring me restoration. I noticed he had been limping when he entered the room and asked him what happened. He said he walks that way every week from Sunday night to Wednesday because he's playing in a soccer league and "is old now". I laughed and said if he's old then I'm ancient because he can't be much older than me and I guessed 40. I was right. I laughed and said it's funny to think that there could be jokester/hoodlum types that I went to high school with that could be performing life changing operations on people in hospitals today. He laughed and agreed. He mentioned how many of these operations he has done and I told him I knew that already and that's why he was my surgeon. He asked me where Bob was and I told him he'd be along a little later and he mentioned that my life as a pilot's wife is likely similar to his wife's life as a surgeon's wife since he's also barely ever home and how lucky our kids are to have moms like us who are independent and courageous and just do what needs to be done. My lingering fears slipped away even before the anesthesiology resident started my IV and provided some calming medication just before I was wheeled off to the OR. I laid there silently while praying for the Lord's protection.

The operation was 8.5 hours long. Dr.C and his team worked first on decapsulating and removing the left implant, cleaning out the cavity where it sat, and putting the muscle back down which formerly had been cut and reshaped to hold the implant in place. He then searched for blood vessels in my chest that could receive the new tissue and guide him on whether he'd need to take any muscle from my belly or if there was sufficient vascular structure that could allow us to spare the tummy muscle (thankfully, my belly muscles were spared). Next, they moved to my abdomen and cut me open there. The incision runs from hip to hip - approximately 3-4 times the length of my c/section scar, just above the c/section scar line. They worked to disconnect the blood vessels feeding a large section of fat and skin and then removed that tissue and transplanted it to my chest and connected each blood vessel, one by one, like a true transplant operation. It's called microsurgery, and it is Dr.C's specialty. At some point when the transplant was done, my remaining abdominal skin was pulled down tighter (since a 4 inch high strip of skin was removed and placed up on the left breast) and closed up. A new navel was created since the original one would be strangely placed if they left it alone. Surgical drains were placed - three of them. Two come out of my lower abdomen and one comes out of my left side at the breast level.

I don't remember being in recovery or being brought to my room but I'm told that I sang the whole way from recovery to my room - apparently I sang full and complete lyrics of some pop song that Bob didn't recognize. Sometimes I'm amazed that Bob doesn't videotape these moments but then I think he's brilliant not to because I probably would feel so humiliated knowing the extent of the silliness that it would likely feed my anxiety/fears about future procedures if I knew how embarrassing I was as I came out of anesthesia.

I love that UCLA has only private rooms. The hospital is really new since they rebuilt it 3 years ago and it still looks new and so incredibly clean and fairly modern in design. The staff are topnotch most of the time. The first team of nurses were on their game and I was given the run-down of how my recovery would go while there. Hourly checks - yes, hourly! - of the blood flow in the newly constructed breast, using a doppler machine. Vital sign checks would be every two hours (not the usual 4), so I wouldn't be getting much sleep. The morphine drip was self-controlled with a button which would release a dose every 8 minutes as needed. At one point I set my iPhone timer to tell me when to press the button because I couldn't tell the difference before or after and when I told my nurse that she said that meant I needed a higher dose and it was increased. I would have the morphine machine from Tuesday night through to Friday which meant I'd also have the catheter that long. I also had a temperature gauge attached to the breast and had to wear a "bear hugger" blanket which is an inflated blanket filled with air at the right warmth to keep the breast temperature at the right level due to the newly vascularized/transplanted tissue. I also had the leg compression devices on both legs to keep blood circulating in my legs to prevent blood clots, plus the three drains dangling out of me. I was literally tied to the bed from Tuesday through Friday night.

I got to take a peek at the new breast almost right away since they had to access it to monitor the blood flow with the doppler. I used my iPhone's reversible camera as a mirror and I was so nervous to look but then so thrilled once I did. The yucky hot and puckered and thick skin was replaced with soft and supple skin. The old grossly indented scar was gone. Instead there was a beautiful and full breast with soft and healthy skin! And, I could already feel the difference as I no longer felt that "jacked-up, meat hook" feeling I walked around having all the time. I was amazed. And - my left arm, the one with lymphedema, actually looked and felt smaller too! I might have been imagining that but then the next day Bob noticed it too!

My recovery has been amazing so far. The nurses and doctors and the occupational therapist could not believe how well I tolerate surgical incision pain and how well I was able to move from the bed to the chair each day when they began having me practice getting up and about. Not a single moan or wince when getting off the bed. I actually surprised myself how little pain I felt. The occupational therapist said I was the easiest patient she has EVER had. :) The only reason I'm still taking pain medication at home is because of the drains which are so incredibly irritating. Once these suckers come out I won't need pain medication anymore because my incisions don't hurt. I'm telling you that God is the ultimate healer and He has had his hand on me through this surgery and recovery. There is no other way to explain how a person could have an incision across the entire front of their abdomen plus a football shape incision over the left breast and have no pain from that! God is so good!

Like I said, the drains are brutal. They hang out of my body and are stitched in place but they move about and rub against the incision they come out from and that is painful. I try to keep them from moving by wrapping them with their tubes with ace bandages on top of the abdominal "binder" I have to wear over the bandaging down there but that shifts when I move at all so it's not a perfect solution and I'm staying on schedule with the medication to dull the pain of that. I'm praying for these drains to come out asap this week. Doc said they need to have output below 30cc each one but preferably 25cc. Every day for the past three days it's been steady at 13-15cc, 28cc, and 28cc. I hope today's output will be lower so that tomorrow I can convince his office to give me an appointment on Wednesday to get them out because I just don't want to wait till Friday. I can't wear any underpants or normal clothes with the drains in place because two come out from the top of the pubic line. I have to strap everything to me with the binder and ace bandages over top of that and then just lift PJ bottoms up over top of that. Bob said I'd never get through an airport like this because the scanners would reveal images that would look like suicide bomber with these bulbous drains attached to tubes strapped to my body. Between that and my hunchback posture (required for these first two weeks to move while bended at the waist), make for quite the look haha. I had started out using "house coats" with snaps and pockets but the pockets were too shallow and the tubes were hanging out too much and getting caught on things as I'd try to walk through the house - far too risky LOL. No showers/baths until the drains are out - another reason I want them out asap. So tomorrow morning, when Dr.C's office opens up first thing in the morning, I'll be on the phone begging for a Wednesday appointment to get them out.

I've been home since Saturday afternoon and was so happy to come home, knowing I'd get more sleep here. Funny because past surgeries it's been the opposite situation because Cooper didn't sleep through the night until recently (even now it's not consistent) but the four hour vitals checks allowed more sleep than I was getting at home. Not this time with the 1-hour and 2-hour checks I had to have during my stay I was in a state of major sleep deprivation while on major pain medication - not a great combination. At home I get great naps and can rest at night while Bob is home and taking care of Cooper and allowing me to rest and recuperate.

Bob has been AMAZING. I'm so blessed to have such a supportive husband. I love you, Bob!

I had some wonderful support and visits from dear friends while I was in the hospital. My dear friend Tara picked Cooper up from daycare Tuesday night and entertained him till Bob could get home after ensuring I was settled into my room and comfortable - thank you, Tara! One of my pastors came to see me and pray with me - thank you Pastor Bob! My dear beautiful friend Jessica, a warrior sister, came and brought me awesome organic fruits and a smoothie and visited with me a while. Thank you, Jessica - I love you! My dear friend Sabina, another warrior sister, also came and brought organic fruits and beautiful flowers for my room, and a pretty prayer journal and smoothies for lunch and dinner on Thursday since the hospital food was not appealing to me at all. Thank you, Sabina! It was so awesome getting caught up with you and you look fantastic! My dear friend and neighbor, Clare, who drove me to surgery Tuesday morning came back later in the week to see me and bless her heart she came in and found me asleep and didn't want to wake me so she left a card on my table which put a smile on my face as soon as I woke. Sorry, Clare, but thank you! xoxo. And, Dr.C's assistant, Marine, came to see me too and brought me some yummy organic berries too! She's such a wonderful person and a joy to work with when scheduling appointments and talking through options and pre-op and post-op stuff. She picked up my state disability paperwork to help Dr.C get it completed and submitted for me for the few weeks that I'll be out recovering. And, of course Bob came each day to bring me my favorite bottled waters and blueberries and such. And all my lovely friends and family that live far away who sent their well wishes to me via email and Facebook all helped me keep my spirits up during the hospital stay. On the second to last day there, I met another survivor in the hallway as I did my daily walkabout and learned that she lives near me and had just had her mastectomy and started reconstruction. We exchanged info to hopefully stay in touch.

I had mostly wonderful nurses - two in particular really will stand out always as the model of outstanding care and service - Sheila and Margaret - thank you so much! Eunice and Marilyn were also excellent and I'm so grateful for their dedication and care. Maria in housekeeping is such a lovely woman who made me smile. These are the true heroes in the healthcare field. I had a few poor performers cycle through during my stay but I'm relieved they were the exception and not the rule. I frequently gave my testimony and credited God for my fast healing and was thrilled that opened the door for some staff to share that they too were Christians and we talked from time to time about the challenges of balancing the desire to witness with the need to adhere to professional rules in the workplace and about how when that door is opened to talk about it, it brings joy and relief so that they can provide additional support to patients in the form of prayer. I brought some beautiful small wooden crosses with verses printed on them as gifts for the caregivers that went above and beyond the call of the job to show me compassion and understanding. I gave out 4 or 5 of them and also gave away my clay comfort cross that is designed to fit perfectly in a clutched hand. Every one was received with joy and not a single person hesitated or indicated any level of offense or disinterest which was a relief and a blessing. God's hand was on me and all of us during my stay - that was clear from the start.

Thank you, everyone, for your support and kindness. I'm excited to finish recovery and get back to the normal routine of work and fun and travel. ;) For now though, I will follow doc's orders and rest as much as possible. Limit my activity. No driving for 4-6 weeks. No lifting anything over 5 lbs for 4 weeks. No raising my arms above shoulder length. No caffeine for 2 more weeks (ouch) - including no chocolate (ugh). No pressure on the breast of belly (back sleeping only) for even longer, probably a few months. Need to start a high protein diet to enhance the healing process. No bathing til the drains are out (except sponge baths). Once the drains are out I can start to slowly add daily walks to my routine, gradually increasing the length and speed but keeping it low key for the first few weeks. Get plenty of sleep and rest because I'll be more tired than usually while my body is healing.

Thank you, father God, for keeping me safe and healthy. For sending angels to care for me and infusing them with compassion, skill and resources to surround me with support. I'm so grateful and give you the glory and credit for my amazing recovery. Amen.

Love,
Julie

Psalm 30 (NIV)

¹ I will exalt you, LORD,
   for you lifted me out of the depths
   and did not let my enemies gloat over me.
² LORD my God, I called to you for help,
   and you healed me.
³ You, LORD, brought me up from the realm of the dead;
   you spared me from going down to the pit.

⁴ Sing the praises of the LORD, you his faithful people;
   praise his holy name.
⁵ For his anger lasts only a moment,
   but his favor lasts a lifetime;
weeping may stay for the night,
   but rejoicing comes in the morning.

⁶ When I felt secure, I said,
   “I will never be shaken.”
⁷ LORD, when you favored me,
   you made my royal mountain^[c] stand firm;
but when you hid your face,
   I was dismayed.

⁸ To you, LORD, I called;
   to the Lord I cried for mercy:
⁹ “What is gained if I am silenced,
   if I go down to the pit?
Will the dust praise you?
   Will it proclaim your faithfulness?
¹⁰ Hear, LORD, and be merciful to me;
   LORD, be my help.”

¹¹ You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
¹² that my heart may sing your praises and not be silent.
LORD my God, I will praise you forever.

Praising God for N.E.D. once again!

2011-06-21T23:06:00.000-07:00

My oncologist called this afternoon with my PET scan results. Just in time too because I was starting to panic a little and prepare myself to accept whatever news I would receive. But, praise the LORD, the call finally came and the news was exactly what I hoped and prayed for - a normal scan with no evidence of disease!

I'm so grateful for our merciful and loving God that I can breathe a sigh of relief and turn my focus on the next challenges ahead - root canal this Thursday, and big surgery on Tuesday next week.

I'm trying to not worry so much about things, and just really enjoy each day which is a gift - I wake up and am blessed immediately with another day. I must remind myself of Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

I'm also focused on celebrating my son's third birthday which is today. I'm so proud of Cooper - he's such a wonderful, loving and happy child. I love him so much. He had a great day and is now soundly asleep and I wish I was too...I better go work on that now! :)

Wishing you a blessed day today, tomorrow, and every day. Thank you for reading and for your prayers - it means so much to me!

Blessings,
Julie

Reconstruction, take two!

2011-06-19T02:06:00.000-07:00

Booby re-do. Ta-ta do-over. Bosom mulligan. ;/

So...I've been a good sport for the past two years and agreed to get replacement breasts following the bilateral mastectomy in June '09, mainly because my hubby and my cosmetic surgeon convinced me I'd want them at this stage or later and if I didn't do it then I likely wouldn't get great results by delaying it, especially since I had to have radiation treatment which does nasty things to skin and tissue.

I originally chose the implant method, using tissue expanders to stretch my skin (since a good deal of skin had to be removed during the mastectomy) and then got the expanders out and regular implants in and have had numerous surgeries to try to achieve symmetry and fix strange issues. Unfortunately, as is the case with 60%+ of cases where radiation is involved, my left breast has just not cooperated. It sits higher, the skin is thick and tough (like the heel of a foot), is tightly clamped on the implant, and the incision scar is deeply sunken leaving a deep crease that can be seen through clothing and basically swallowed up the nipple that was created because the skin won't push out and I have the lymphedema swelling that pushes out the softer skin above and below the scar line. The radiation damage that causes this gets progressively worse with time - it started out OK, but just got worse with each surgery.

There are days where I look in the mirror and think 'oh screw it, it's fine' and I put on the bra with the inch of padding in the tip to create a rounded appearance (a normal padded bra would not work). But then an hour or so later I'm catching myself in public clutching my boob because it feels so tight and uncomfortable - not that grabbing it makes it feel any better, just that it is a natural reaction to the yucky feeling and at the time I think if I just lift it maybe it won't feel that way. Then when I'm home I take off the special bra (which isn't that comfortable either!) and I see my boob with a butt-crack and I think 'hey! why should I put up with this!?' Why SHOULD I have to wear strangely padded bras that are difficult to find just to appear normal in clothing?! But, more importantly, why should I have to FEEL so uncomfortable because I have damaged skin and tissue clamping down on an implant!?

My surgeon is amazing. He is so compassionate and talented. He listens to my concerns and works hard to find ways to fix the issues. Each time I've gone under the knife I know I'm getting the absolute best care with him. Unfortunately, working with radiated skin and tissue has its limitations. We've reduced the implant size twice, hoping that the tightness I feel from the radiated tissue/skin and the lymphedema would ease up but unfortunately it has had the opposite effect and now I'm lopsided and incredibly uncomfortable and deformed. But I'm tired of surgeries and feeling so uncomfortable. Just before the last surgery I told Dr.C that if this tweak didn't work I want to take the implants out and just give up and be done with it - I didn't want them anyway - I only just wanted to survive.

But here I am, two years later, numerous surgeries into this and so much time and hope invested. I have a beautifully reconstructed right breast and a yucky left breast. So I asked Dr.C if there was any way possible to achieve on the left what I have on the right or if I should just hang it up and go flat. After discussing the options I decided that to achieve the results I want we need to replace the radiated skin and tissue to eliminate the clamped-down implant and the yucky feeling from that, and the butt crack crater across my breast.

On June 28th I will undergo a DIEP flap (also known as "free TRAM") reconstruction surgery. The left breast implant will be removed and then skin and fat will be taken from my stomach and transplanted to the left chest to create a new breast. The current skin from the incision/scar and down to the crease of the breast will be replaced with skin from my stomach and the fat attached to the skin will form the new breast. This surgery is major - it involves "microsurgery" which means the blood vessels connecting the fat in my stomach will be dissected and then reattached to vessels in my chest to ensure a blood supply is established in my chest to keep the fat/skin "alive". This flap procedure spares the abdominal muscles (unlike the traditional TRAM procedure) which helps reduce the risk of hernias and other issues. The incision will span the entire length of the front of my stomach though and since I'll lose skin and fat there and will be sewn back up, I get a "tummy tuck" kind of (a painful bonus). This is only happening on the left side - the right breast stays as-is since it's behaving.

This is a complicated surgery which requires 4 nights stay in the hospital and several weeks of recovery. Thus, choosing this direction did not come lightly. In fact, every day I get a little freaked out about it and pray that I'm making the right decision. I know that I am and that I'll be happier once it's done, but I'm a bit scared of the pain and recovery process. I'll come home with drains, will be in bed for a couple/few weeks, won't be allowed to drive for 4+ weeks, can't lift anything for 4-6 weeks, and the abdominal incision will be 3x as long as my c-section incision was.

So, in just over a week I'll check into UCLA and get a new left boob. Praise God for an amazingly supportive husband and family and friends without whom I could not do this. Bob will be stepping up to take charge with Cooper and the animals and when he is away for work my mom will be here for a couple/few weeks once I'm home from the hospital. My dear friend, Tara, is going to help us with Cooper on the day of my surgery so Bob can be at the hospital with me. And other friends on the block have offered to help entertain Cooper when my mom needs a break during her visit.that this is even possible! I'm so blessed to have such amazing physicians, to live in the US where federal law requires that cancer-related breast reconstruction must be covered by insurance if the treatment/removal is covered, to work for an incredibly supportive employer that provides excellent benefits and is compassionate and supportive, enabling me to take the time to get this done. I am VERY appreciative of everybody's support. I am so blessed and grateful.

In preparation for the surgery, I've had numerous pre-op tests this past week. Blood work, EKG, chest x-ray, echo cardiogram, PET scan (results due back Monday/Tuesday), and even had to have a toothache checked out and now I get to have a root canal next week! ;/ I've gone off my blood-thinning supplements (baby aspirin and fish oil). And this weekend I've shopped for extra large front-clasp sports bras and super big, button down PJs for hospital and home, and been stocking up on diapers and other things that I won't want my mom to have to be bothered with going hunting for while she's here helping out. Got my haircut since I was due for one but couldn't wait 4+ weeks to do it (sitting in the hair washing chair would be a no-go for me post-op for a while). I need to do another major cleaning of the house and get the house ready for guests. And, I need to ensure that I do an effective temporary hand-off of work projects/tasks to the folks covering for me while I'll be out for a few weeks. Oh yeah, my son turns 3 in two days. ;)

Lots to get done. I had better get to bed and get some rest!

Prayer requests:

Praise God for the wonderful support of family, friends, colleagues, and the brilliant physicians caring for me
Prayer for clear PET scan results to demonstrate continued remission
Successful, complication-free root canal on Thursday (23rd)
Successful, complication-free surgery on the 28th and speedy recovery

For baby Jazmine Bossman's cure and healing (distant relative 1.5 yrs old, with brain cancer)

Thank you so much for your ongoing love, support, and prayers. xoxo

Gratefully,

Julie

Psalm 25:4-7 (NIV) "Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. Remember, O LORD, your great mercy and love, for they are from of old. Remember not the sins of my youth and my rebellious ways; according to your love remember me, for you are good, O LORD."

Why the Susan G. Komen foundation has lost my support

2011-06-12T10:47:00.000-07:00

I encourage everyone to read and pass on the following open letter to the Susan G. Komen foundation, by Alicia C. Staley, a breast cancer survivor.

Open Letter to Susan G. Komen leadership, by Alicia C. Staley

I have turned my fund raising support to the following organizations who do a better job of actually supporting patients, caregivers and loved ones who face the devastation of a cancer diagnosis, and focusing on funding innovation for treatment and pathways toward an actual cure without harming others who share their mission:

Stand Up To Cancer
Triple Negative Breast Cancer Foundation
American Cancer Society
EIF (Entertainment Industry Foundation) Revlon Run/Walk For Women

I appreciate and respect the founding principals of the Komen organization but they have gone off track and are now harming the cause, in my opinion. I think Alicia did an excellent job explaining how and why.

Love and blessings,
Julie

2 years!!! Praise God!!!

2011-05-28T20:17:00.000-07:00

Today marks 2 years since I heard those awful words "It's breast cancer." from my doctor. I am filled with immense gratitude and praise for God for allowing me to be here still with my family and friends. Triple negative breast cancer is a nasty beast with a nasty habit of sticking around so it is a huge relief that I've made it this far. I'm not "out of the woods" yet but I'm grateful for every day, every hour, every minute that God gives me with my son. Two years is a big deal and I'm not letting this day pass without acknowledging how huge it is.

Thank you, Lord, for your mercy, for your grace, for healing me and giving me another chance to glorify you and spread your good news. Only you know how far I've really come and how much further I need to go. I put my full trust and life in your hands and know you will use me as I should be used. Thank you for bringing me to you, Lord, for I was lost and now I am found.

When was your last breast self exam?

2011-05-27T01:56:00.000-07:00

If it's been 30 days or more since your last breast self exam, it's time to do it again. It doesn't take long, it isn't hard, and it doesn't hurt. It MAY save your life. Don't be foolish by skipping it. Do it. Now, please.

Not sure how? Here are some links to useful info:

Now, please create a recurring monthly appointment in your cell phone, computer, or other calendar that you rely on for your appointment keeping, to do your monthly breast self exam.If you feel a lump during a breast self exam, contact your doctor and request a diagnostic mammogram and ultrasound. If your doctor doesn't take your concerns seriously and won't order the tests, go to another doctor. EARLY DETECTION SAVES LIVES - including your own.

Prayer requests:

Praise and thanks to the Lord for reaching my 2 year survivor milestone this coming week (28th) and for His continued protection and ongoing healing and guidance.
For clarity and strength as I consider a major reconstructive surgery that I may undergo in one month. May the Lord guide me and my surgeon to make the right decision, for the right reasons.
For healing and comfort for a sister warrior in crisis with metastatic breast cancer.

Today, I walk...

2011-05-07T07:10:00.000-07:00

...for Theresa, Nancy, Gilbette, Carol, Paula, Daria, Maria, Daisy, David, Tara's mom, and so many more (too many) whose lives were cut far too short by cancer.

Today I honor them by walking 5k with other cancer survivors, caregivers, and loved ones. You will never be forgotten. We will keep fighting until the cure is found.

Friends, please feel free to comment in memory of your loved ones.

Dear Lord, please bless this event and keep us safe and strong. Please bring comfort and peace to our broken hearts and please, Lord, guide the scientists minds and hearts to the cure. In Jesus' name, this I pray. Amen.

I could use your help

2011-05-05T00:02:00.000-07:00

As I approach my 2nd year anniversary as a breast cancer survivor later this month, I'm also preparing to walk in my 2nd annual Revlon Run/Walk for Women to raise critical funding for research for women's cancers and educational and awareness programs.

If you are able to help me and my team, the Pink Wig Warriors, to meet our fundraising goals, through either a donation or by sharing our link to ask others to consider supporting us, I would be so grateful.

There is a a tab/page on my blog dedicated to this with information and a link. See the tab referring to funding the cure, or you can go directly to my personal page for the fundraiser at:

Please click here to visit my fundraising page for the Revlon Run/Walk for Women

Thank you so much for your support and encouragement! You are a blessing to me and I'm incredibly grateful.

Love,
Julie

Being a patient patient...

2011-04-27T12:06:00.000-07:00

Being a patient patient is hard to do when you just want to be done and move on. I had a productive, albeit frustrating (due to lacking patience), appointment with Dr.C the other day. He totally understands my concerns and is willing to do whatever necessary to help me achieve some sense of normalcy so I don't feel deformed or chronic discomfort where it can be avoided. He did however say that I need to wait another month or so (next appointment is June 3rd) to see how things settle after this last surgery before we can make a decision about the next step. He understands my concerns about us approaching the end of the current insurance plan year and me having JUST met all the deductibles, out of pocket maximum, etc and the fact that if we wait til after July 1 to take the next step it will cost me over $3,000 out of pocket (my heart sinks every time I think about this because I'm tired of being broke from medical and related bills). But I understand that this is not something that can be rushed either because the my choices involve surgery - one path is a series of additional minor surgeries, while the other begins with a major surgery involving several nights in the hospital and 4-8 weeks of recovery time. It's a big decision that will require thoughtful consideration and potentially a lot of planning (will need some help here for a few weeks since Bob is away so much and I won't be able to lift and do normal activity for a few weeks if we do go with the major surgery).

We talked through several options, the risks and benefits of each, and narrowed it down to two, one of which I was fearful due a risk that became a reality for someone I know but Dr.C was able to alleviate my fear and explained that my risk level for that particular complication was actually less than one percent which is not any different from the risk of that same complication with the current method of reconstruction and surgeries I've been having so that was a big relief and that alone put my mind at ease about this decision that I'll make in June.

Meantime, I'm not allowed to lose any weight because one of the options requires use of my current belly fat to form a new left breast and apparently I barely have enough to do it even though I'm carrying an extra 20-25 lbs on my frame right now. So I'm hanging up my 17 day diet effort for now - part of me is thrilled to welcome carbs back into my daily life but the other part of me is bummed that I'll be feeling like a chub-a-lub through the summer. ;/ Giving up my ovaries last summer meant giving up my metabolism and I've packed on about 12-15 lbs since then which I really want and need to shed as soon as I can. I can't give up exercise though as that's critical for recurrence prevention so this week I resume exercising but will focus on doing just enough to raise my heart rate for the 30-40 min/day necessary. Walking instead of running. I'm OK with that as I've taken a break due to surgery and travel and it's been tough getting back into it anyway so this just forces me to resume gradually and I'm good with that.

Patience isn't my strong suit but this journey (plus becoming a mother) has forced me to develop more patience than I ever imagined I would have.

Dear Lord, thank you for Dr.C and the many other brilliant physicians and nurses who provide me with excellent and compassionate care. Thank you for infusing patience and understanding into my heart and mind when I need it most, and thank you for your unconditional love and guidance as I continue this journey to restore my body and seek to use my experience to glorify you and perform your will. Thank you for the most supportive and amazing husband and family and friends. I feel truly blessed and honored every day knowing you are for me and with me always. In your son, Jesus' name, I praise you and thank you. Amen.

(Re)Construction zone: proceed with caution

2011-04-25T12:54:00.000-07:00

I haven't written about my most recent reconstructive surgery (which was on April 14th), largely because I'm so upset about it. Don't get me wrong, I have one of THE most brilliant reconstructive surgeons in the area and at UCLA and he is also incredibly compassionate and caring - I'm very lucky. Dr.C has been amazing. He lays out my options, informs me of the risks and benefits of various approaches to the many steps of this process, is very talented and a great listener, and has been willing to fix things that I think many other surgeons might not bother with from what I'm hearing/seeing when comparing experiences with other breast cancer survivors.

Reconstruction has been a lengthy road for me, involving numerous surgeries. The approach I chose was bilateral mastectomy with immediate reconstruction with tissue expansion and implants. Overall it has been a pretty straight forward process with no unexpected complications but I have had several challenges trying to achieve symmetry in shape, size and comfort because of the simple but aggravating fact that radiation changes the skin and tissue, making it less cooperative, increases lymphedema issues, etc. I handle surgeries/anesthesia really really well, thank God.

After this recent surgery, the right side finally looks wonderful - really awesome actually. Unfortunately, in spite of our many attempts to fix it, the results for my left side (the radiated side) are not great. The appearance and feeling is actually worse than before this past surgery and that is why I haven't posted to the blog about it yet - every time I think about it I break down emotionally. Then the fact that I'm emotional about this upsets me even more because I began this journey not caring about my breasts' appearance - all I cared about was surviving this disease and being here for my family. But I let myself be convinced by others that I would care later on and to just try to get the best results possible and I could always undo it later on if it didn't turn out well or whatever. And then when something didn't look right I would hesitate to raise it but then would be encouraged to speak up because this is the only time it can be addressed and I have a right to get great results. So I have endured numerous surgeries (which are just major inconveniences to my work and personal life schedule - not just for the actual day of surgery but for weeks before and afterward because I have to stop taking important supplements 3 weeks before surgery and then for 3 or more weeks afterward I'm not supposed to lift Cooper and have to avoid too much physical activity like working out till I'm cleared for those things -- so, it's a major time investment that requires garnering the help of others with Cooper since Bob is away so much). Again, I handle surgery/recovery really well thank the Lord or else I might have put a stop to this a year ago.

So why is it (left side) worse than before? Well mainly because I have lymphedema swelling that causes that side to be bigger and that's whey we've gone down implant sizes two times on that side (this last surgery included downsizing the implant) and the previous downsize was the right decision but this one not so much as the breast sits higher and remarkably smaller than the right side now. Additionally, the lymphedema swelling combined with the toughness of the skin at the incision has made it such that the shape of the breast is yucky - the profile view reminds me of the tip of an elephant's trunk. The swelling has caused the reconstructed nipple to practically disappear into the incision because the areas above and below the incision swell and hang over the incision line where the nipple sits.

OK and that's just what's wrong with how it LOOKS. I haven't even mentioned how it FEELS - UGH. I feel like my left armpit is being held up by a meat-hook that's being tugged on and causing a pulling/twisting feeling of the breast. Three days ago Bob pointed out to me that I had been walking around nearly 24/7 with my right hand in my left armpit and/or stroking my left side around the clock (to try to move the fluid out of the breast and down to my side). I can only imagine how it must have looked as I walked around Trader Joe's and Whole Foods last week with my hand in my pit or on my breast without me even realizing it at the time ;/. But it just feels terrible all the time - it felt yucky or "gunky" as I often describe it before, but now it feels worse. As of this morning it feels a little better than it has this past week but I wonder if that's because I know I'm marching into UCLA today to get some options/answers.

Frankly, I'm sick of this process. I want to be done. I want to move on with life and not be subjected to all of these surgeries and not have this daily reminder (aching, swelling, etc) that my life has been forever turned upside down by cancer. I told Dr.C during my pre-op appointment that if this one doesn't do the trick, I'll probably ask him to take the implants out and forget about having breasts.

But here I sit, sobbing like a baby knowing that if I opt for NO breasts I'll be just as sad and distraught as I am about having an ugly breast that aches 24/7. I also know that the alternative between those two probably

I'm trying to not make any assumptions about any of this and you can see my mind is already racing about all the things that could happen if we start over on the left side but I'm terrified that the next decision I make about this will forever change things for me/us - of course it could be for the better, but it could also mean for worse if complications arise. I fear that I would choose to start over on the left side and have complications that would negatively impact my health because I wasn't willing to put up with an unpleasant appearance that could be hidden with layered clothing and prosthesis (which are not cheap nor comfortable). It's just all so emotionally confusing and overwhelming so Bob is coming to this appointment today. I need him to be there and hear ALL of our options, pros/cons, risks, etc.

Please pray for guidance for this decision...that God will lead us to make the right choice and that I'll be at peace with it and able to move forward and focus on more important things.

Cancer Chic Wear

2011-03-17T23:57:00.000-07:00

My dear friend, Randi, whom I've known since we were kids, is a breast cancer survivor who has put her creative talent and passion for helping others into creating a business making hats and scarves for women going through treatment. Randi discovered, like so many of us did, that run of the mill scarves and hats may have worked OK but they didn't do much to make us feel beautiful when we didn't have any hair.

Randi's products are beautiful and it's no surprise to me since she is a beautiful person, inside and out. I wanted to share her website with you and encourage you to check it out if you're in treatment or know someone who is. I know you'll love her work and hope you'll consider buying her products for you or a friend.

When I was first diagnosed, Randi's cousin Kori who is one of my very best friends since childhood called me and put me back in touch with Randi who helped me get through the initial phases of deciding my treatment path and getting through it all. She knows how to give back and I'm so grateful for it. I want to help her too so I hope sharing her website does indeed help her. Love you, Randi and Kori! :)

Click below to visit Cancer Chic Wear by Randi

http://www.cancerchicwear.com/

Great job, Randi! Seriously, beautiful work!

Living with lymphedema

2011-03-13T15:23:00.000-07:00

Lymphedema blows. Don't get me wrong, I'll take it over cancer any day. But, having lymphedema does suck as it interferes with life every single day. I am not able to lift or do repetitive motion with my left arm without fear of causing it to blow up like a balloon. I can't have blood pressure checks or needles in that arm EVER. I have to wear a compression sleeve 24/7 and at night I wear a special padded sleeve with a compression sleeve over top of that to help aid in channeling the fluid up my arm and down my side. I have to sleep on my back or my right side - if I fall asleep on my left side or roll onto that side my arm and hand will go numb within a few minutes and that could also lead to fluid build up. I have to take my wedding rings off before bed and before any type of exertion or exercise so that if I flare up they won't have to be cut off of me if the flare up is really bad. Edited to add: I also can not get into a sauna, steam room, or jacuzzi because the high heat involved is a risk factor for flare-ups for both those with lymphedema and those at risk for it. That's a bummer because I used to enjoy occasional spa visits - now I have no reason to go to one - the money I save by not going to a spa only gets spent on lymphedema management garments and therapy. ;(

When I have a flare-up, my arm swells up and I can't just carry on as usual - I have to see a lymphedema physical therapist trained in manual lymphatic drainage massage 3 times per week and get bandaged in stiff bandaging (with foam underneath) for a 2-3 week period - bandaged from knuckles to shoulder with several short width bandages that are put on and taken off only for bathing and then put back on again. This has to be done to get the excess fluid out of the arm as much as possible as stagnant fluid can cause infection and can harden up.

Why do I have this? Because I had 17 lymph nodes removed during my bilateral mastectomy and the remaining nodes and channels were damaged by radiation therapy so my left arm has no healthy channel for filtering and dispersing the fluid that naturally occurs and moves through the arm and through the lymph nodes and vessels to the rest of the body. About 1/3 of women who have lymph nodes removed will develop lymphedema. It can happen at any time - 5 days or 5 years or even decades after surgery - even if you take all the recommended steps to try to prevent it. If you have radiation therapy as part of treatment, you become something like 3x more likely to develop lymphedema because of the damage radiation does to nodes and channels in the radiated areas.

Since I have to wear a compression sleeve around the clock, I have to have several of them. They only last 4 months with daily wear because they have to be washed daily as the natural oils from the body break down the elasticity of the compression fabric. They cost, on average, $75 per sleeve. I keep 3 sleeves at a time, and because they are sold by specialty medical supply stores which generally don't participate in health insurance groups they are almost always out of network and subject to the out of network deductible that I never fulfill because the rest of my care is always within network. 3x$75, 3 times per year, plus the sleeve and padding and bandages for night time wear and the arm garments alone run me $1000 per year out of pocket. The therapy, when in network, is $30 copay per session, so flare-ups (I generally have 2-3 per year), costs me another $1000 out of pocket per year.

I haven't even mentioned the "gunky" feeling of having my left arm and left breast be swollen and bigger than my right side all of the time. For me, that's the worst part of lymphedema. It causes aching and a general yucky feeling all of the time.

I am incredibly lucky that there is a wonderful lymphedema therapist within a 40 minute drive of my home - she's the best in the state and trained by the most prestigious school for lymphedema therapy and management. She is a delight to work with and very compassionate and understanding. She has shared so much knowledge with me to help me understand the lymphatic system and the types of treatment that are effective and the types that some PT businesses use which are harmful so I'll know what to avoid too. Love you, Richelle!!! :)

I'm also very lucky that this is effecting my left arm and not my right side which I rely on for writing and other tasks where I favor my right hand/arm. Praise the Lord!

Anyway, I brought this up for a couple of reasons - first, a few friends of mine are just beginning their breast cancer journey - surgery, treatment, etc. - and they'll need to get up to speed on their risk for lymphedema and how to prevent and/or manage it if it occurs, and secondly it is time for me to replace all of my sleeves (wallet is weeping LOL) so it is on my mind more than usual this weekend.

If you would like to learn more about lymphedema, there's a great organization - the National Lymphedema Network - and their website is: http://www.lymphnet.org/

Feel free to comment here or email me with any questions about this. It'll be part of my journey for the rest of my life now that I have it (mine is considered irreversible but in some, though not all, patients if it's caught early enough it can be reversible).

I hope you are having a blessed Sunday!

Love,
Julie

Obeying

2011-03-08T17:01:00.000-08:00

Some days I think gosh I've been through so much I deserve a break from this nonsense (cancer) and then I wake up and realize I was given this gift (did I say that out loud!?) so that I could spread God's great news and help bring hope and healing to others the way the Lord brought it to me in my darkest hour.

I have a calling that needs to be fulfilled and much to share and it's time to focus and be obedient. That's what has been on my mind as I make mental plans to make time on my crazy schedule to get going on this most important project of mine. The Lord knows I'm gearing up and He is turning up the heat and putting one opportunity after another in front of me to get me thinking about and planning for this project. No more excuses. It's time to get down to business.

Meantime, I could use your help. Please check out the new page on my blog about funding the cure and please consider helping in one or more of the three ways listed.

Please also pray for Amanda's quick healing from surgery (which went well, by the way - Praise God!) and transition into treatment, and please also pray for my new friend Gayle's upcoming surgery and treatment too. Thank you so much!

Reminder - I co-facilitate a Christian cancer support group in Santa Clarita at noon on the third Sunday of every month at NorthPark Community Church. If you'd like to check it out or learn more about it, please email me or leave a comment :).

And, yes, I'll share more about my project later ;)...gotta run for now.

Prayers for Amanda

2011-02-28T14:08:00.000-08:00

Dear friends and family,

Amanda, a close friend of mine, is having a bilateral mastectomy and reconstruction this Friday as the first big step in her treatment for breast cancer. I ask you to please pray for her and her family. Please pray for a smooth, complication-free surgery that eliminates all traces of cancer from her beautiful body, and for a smooth and successful transition from diagnosis to treatment stage for her and her family. Please pray that she has all the support she needs to meet the demands of her children so that she can focus on getting cancer-free, and for her husband and children to have the strength, patience, and understanding as they move into this phase of the process and encounter a new normal for a little while until treatment is completed and they can resume a nicer new "normal" life once again. Thank you, my prayer warriors, for praying for Amanda!

For Amanda -- Below are verses that were given to me when I began treatment, before I was even a saved believer. A couple of them were on index cards, the others were on gift items like a little plaque and a bookmark. I stared at them, as I laid in bed recovering from surgery and they struck a chord with me. I hope they provide you and others some comfort on your own journey. You are in my thoughts and prayers daily!

With gratitude,

Julie

xoxo

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."

Isaiah 41:13 "For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you."

Philippians 4:6 "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."

Jeremiah 29:11 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."

Please help baby Jazmine - 15 month old baby in my family fights cancer

2011-02-17T21:11:00.000-08:00

Please help baby Jazmine Bossman (15 months old) in her fight against cancer. Go to the iCare site link below to learn about her battle with cancer and how you can help.

http://icare4causes.yolasite.com/baby-jazmine.php

Please pass this on! Thank you!

Back to the body shop

2011-02-14T10:52:00.001-08:00

Just met with my brilliant breast reconstruction surgeon to discuss the painful scar tissue (the stuff that caused my recent scare) and the dents and flattened nipples situation. He could definitely feel the hardened capsular scarring and said he could try to remedy it but no guarantees it won't happen again. The dents and nipples is a relatively straightforward fix using fat from my mid section. See! A good use for my new menopausal "love handles" haha. :/

Another surgery on the books for mid-April now. It will be an iterative process to address it all but the girls should be finished with reconstruction this year.

Thank you, Lord, for the brilliant and compassionate Dr.Crisera!

Sent from my Verizon Wireless BlackBerry

In the belly of the fish

2011-02-12T17:20:00.000-08:00

It took being swallowed by a fish for Jonah to finally turn to God. I know what that feels like. It was in my darkest hour that I looked up and saw God's powerful light and became a reborn believer after spending years living the life of an agnostic. It was sudden but then that's because my eyes were opened to His miracles suddenly. And, I don't even mind that some may mumble under their breath or snicker (or even send me explicit communications saying so) about what they refer to as "a convenient conversion"; instead, I pray for them and ask God to show them the power and unconditional love and healing He has shown me. I pray that when they are sitting in the belly of the fish they look up and find refuge in the Lord.

I'm studying Jonah and the author of the study, Priscilla Shirer, says this:

"God's good at taking our messes, our leftovers, and doing something good with them. Parts of all of our lives we'd just as soon forget, yet in the hands of a Master, our mess can become the greatest miracle of all. He has a way of chopping, dicing, and reconfiguring the parts that we thought were of no use. He's got a knack for pouring on His Spirit and sprinkling on a bit of grace and mercy. Then, voila! Fresh out of the oven of a trial or two, there's something delicious from your life that you never thought possible." - Priscilla Shirer, 'Jonah: Navigating a Life Interrupted'

So, as you sit in the belly of the fish (regardless of how you got there), trust in the Lord, the Master, call out to Him, and know that He has plans for you if you'll just get out of His way and let him work some magic.

May God bless you today!

Love,
Julie

MRI results CLEAR!!

2011-02-02T16:03:00.000-08:00

Yay!! Praise God!! Just got the call from UCLA that my breast MRI results are clear -- Oh N.E.D., how I love you! :)

Me & NED's first anniversary is here!

2011-02-01T16:30:00.000-08:00

I'm not cheating on Bob, I promise. But I *DO* LOVE NED (no evidence of disease) and am hoping to maintain my plural marriage to him and Bob for many decades to come.

Today marks the one-year anniversary of my first clean PET/CT scan after diagnosis. I've been a survivor since the day I was diagnosed in May '09 but I've been "cancer-free" since that first clean scan on Feb.1, 2010 which took place after chemo and before radiation.

Happy anniversary, NED! You're stuck with me, buddy. OK!? :)

Praise God for getting me THIS FAR and for carrying me even further. I'm grateful beyond words.

I just got back from having a routine breast MRI (it's been one year since the implants were "installed") so I'm praying for an accurately clean test result to come in. I should hear something within 48 hours. Thank you, in advance, for similar prayers.

Jonah 2

1 [a]From inside the fish Jonah prayed to the LORD his God. 2 He said:

“In my distress I called to the LORD, and he answered me. From deep in the realm of the dead I called for help, and you listened to my cry. 3 You hurled me into the depths, into the very heart of the seas, and the currents swirled about me; all your waves and breakers swept over me.

4 I said, ‘I have been banished from your sight; yet I will look again toward your holy temple.’ 5 The engulfing waters threatened me,[b] the deep surrounded me; seaweed was wrapped around my head. 6 To the roots of the mountains I sank down; the earth beneath barred me in forever. But you, LORD my God, brought my life up from the pit.

7 “When my life was ebbing away, I remembered you, LORD, and my prayer rose to you, to your holy temple. 8 “Those who cling to worthless idols turn away from God’s love for them. 9 But I, with shouts of grateful praise, will sacrifice to you. What I have vowed I will make good. I will say, ‘Salvation comes from the LORD.’” 10 And the LORD commanded the fish, and it vomited Jonah onto dry land.

Running...

2011-01-21T22:39:00.000-08:00

...I used to never do it. A girl with big knockers could really hurt herself running, ya know! Well that was my excuse (invalid) anyway.

There was a study I read while I was in treatment that said a breast cancer survivor could reduce their risk of recurrence by 45% or more if they exercised in a manner that raised their heart rate for 30 or more minutes six days per week. Gulp.

I hadn't been working out for a while since becoming pregnant with Cooper (Oct.'07) due to the 19 weeks of strict bed rest (valid excuse) I had and then the extreme sleep deprivation once my little man was here - his first year was pure survival and it was exercise just staying awake and being functional (so-so valid excuse).

Anyway, I started changing my lifestyle immediately after being diagnosed. Purged my house of toxic chemicals (cleaning supplies, fragrance products, beauty products - anything that had toxic chemicals in it), switched over to organic eating, added vitamins and supplements, and much more. The exercise thing was on hold (except for some walks mainly for meditation and fresh air) until after treatment was over (doc-approved excuse).

Then I had more surgeries and exercise remained on hold for a few more months (valid excuse).

Finally I got into gear and joined a new gym and got off to a great start. Then sort of fizzled out because I was doing some traveling (invalid excuse).

At a recent follow up visit to the oncologist I told Dr.B that I had gotten started but wasn't going as often as I should and he said "exercise is the single most important thing you can do to work toward prevention of a recurrence." Got it. Enough said.

I've been running just about every day since then. I'm currently traveling and have dragged my butt to the gym every day since arriving. I happily handed over $25 for a week-long pass and as soon as Cooper starts his nap just before/around dinner time (time zone change has been a challenge for him), I grab my gym bag and head over to the gym. Yesterday I ran the longest time and distance I have ever run before - 45 minutes, 3.2 miles. It helped me get out my frustration and anger that I began to express on the blog yesterday. It helped me feel like I was taking back some control.

This is new for me, but it's the new me from now on. This is not some new years resolution that will go awry in a few months time...this is my life now. No more excuses. I run to live. And I will run to honor God and to fight for me and my sister warriors.

1 Corinthians 9:24 (NIV) Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.

1 Corinthians 6:19-20 (NIV) Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies

WTF....no, seriously, WTF!

2011-01-20T21:12:00.000-08:00

This past week I've learned of four new breast cancer diagnoses amongst women I know and care about and friends of close friends. All of them are young women in their 30's and early 40s. Worst yet, one of my friends who has battled triple negative breast cancer for the past 3+ years has joined her precious daughter in heaven. This is bullshit and I'm angry. Damn angry. What the fuck!? No, really, what the FUCK is going on?!

I'm sorry I'm cursing but I can't think of any other word that appropriately expresses how I'm feeling right now.

One survivor friend of mine has a father who is a gynecologist who asked another gynecologist friend of his in another state if he'd been seeing a high number of young women being diagnosed and his response was a resounding yes and they discussed how they can't believe the rate of this shit appearing among my generation of women. The doctors are alarmed. I repeat, the doctors are alarmed. THE DOCTORS ARE ALARMED. Not surprised, ALARMED. Yeah.....

I was in Whole Foods today and I was thinking that by now there HAS to be a hair styling product in the store that doesn't have carcinogens in it....and there it was, a bottle where the name of the manufacturer was something something "organics"....ok let's see, looked at the ingredient list and there was ONE organic ingredient out of about 30 and that one was at the bottom of the list but was preceded by 29 CHEMICALS.

WE ARE POISONING OURSELVES and letting these manufacturers deceive and harm us with their toxic chemicals. Our government is letting this happen by not requiring manufacturers to prove a product or ingredient is safe. Oh, and if we choose not to consume, use or otherwise expose ourselves to these dangerous toxins we still are bombarded by them in our air and water every.single.day. When are we going to rise up and demand change? When will the voices of those who already do be heard?

I don't panic often but let me tell you I have been on the verge of a panic attack for the past 8 hours since hearing about my friend's passing.

Dear Lord, PLEASE I BEG YOU, PLEASE help us....help us find the cause and the cure. PLEASE, Lord. PLEASE. PLEASE. And please help guide me to live out your plan for my life - to glorify you and to help others find comfort, peace, information...I am your vessel. And did I mention that we need a cure? Lord, please cradle my friend Theresa's family in your loving and healing light and bring them comfort and peace as they grieve this loss. Lord, please give my newly diagnosed friend strength, determination and wisdom as she navigates the tests and procedures and treatments that are ahead of her and help her feel your presence and see your miracles and be healed of this disease and to help her family get through it. Amen.

Birthdays - I want LOTS of them :)

2011-01-10T22:05:00.000-08:00

Not too many years ago I dreaded my birthday. I don't know why, I just did. I didn't want a fuss made about it and the only time I really celebrated was when family or friends initiated it. Maybe that's not unusual - I don't know. I've never dreaded aging either - didn't freak out or worry when I approached 30 or 35 and today as I turned 39 and realized I'm just one year from 40, I could only think "thank you, God!" and "bring on the birthdays!"

Today is my 39th birthday. My husband jokingly said "from here on out you are considered 39 and holding." I suppose a lot of people do that - celebrate 39 or 49 or whatever over and over and stop revealing their age to others whereas some likely don't care.

Now that I'm a cancer survivor, I want lots and lots and lots of birthdays. I want to celebrate and cherish each one. I want to age! I am excited to turn 40, 45, 50, 55, etc. I will be thrilled to turn 60, 70, 80, even 90. I pray that the Lord's plan for me includes being here to reach those birthdays so that I may witness my son's birthdays here on earth.

My love is away working but last night I enjoyed dinner with a dear friend and fellow sister warrior survivor, Tira. We enjoyed sangria and dessert too! My awesome friend, Susan, watched Cooper for a few hours so that I could go out - thank you, Susan!!!

Today I celebrated by waking up and deciding to take an unplanned vacation day. I don't usually do that so I didn't think to do it ahead of time. But thankfully I work for an awesome employer and team that is supportive and flexible so I was able to do it. Although I hadn't planned to do it, I did have some quiet time over the weekend during which I decided to do some work that normally I would have done today so what's great is that I'm not even behind as I return to work tomorrow. However, if I was that would have been OK too because frankly my priorities are finally in order now. Truth be told, I still did some work today - a little bit of email and participated in a conference call. But I also let Cooper sleep in, played with him at daycare when I dropped him off instead of rushing out, caught up with some friends online, and had an awesome workout at the gym. After picking up Cooper from daycare we headed out to meet my great friend Tara and her son for dinner. I was flooded with kind and loving birthday wishes on my Facebook wall today. So, it's been a wonderful day and I'm incredibly grateful for all the love that's been shown to me. I'm so blessed.

Thank you, Lord, for blessing me with another birthday! I welcome them and hope and pray to have many many many more.

Love,
Julie

First "real" post-treatment haircut

2011-01-09T15:40:00.000-08:00

On Thursday I had my first real (all-over) post-treatment haircut. This one was "real" because back in October I stopped into a mall salon and had the back trimmed when I woke up and realized I had a 'mullet' (gasp) but didn't have any other sections touched until this past week.

Although my hair has grown pretty quickly this past year, it still feels S-L-O-W since I was starting from scratch (bald). So it was with mixed emotion as I watched about an inch and a half of hair chopped off. I was excited to say goodbye to the chemo-fried hair that plagued the ends of my hair but a bit unnerved to see so much growth fall to the floor. It's a transition. It's a transition. It's a transition.

I had my friend, and sister in Christ, Kristin, cut it for me. It was my first time getting it cut post-treatment and my first time having Kristin cut my hair and I'm so happy I made that decision because talking to her throughout the cut brought me calm and peace and because she's very talented and did a great job shaping my hair and working around the new cowlick that has appeared at the top front of my head. ;)

Thank you, Kristin, for the great haircut and friendship.Our friendship is new but you inspire me to be a better person and Christian.

Thank you, Lord, for getting me through this and so many other challenges along this journey. I'm so blessed and honored to be entrusted with the powerful responsibility of spreading your good news and using my experience to learn, grow and help others whenever possible.

Think you're having a "bad hair day"?

2010-12-17T00:54:00.000-08:00

If so, please think instead of all the millions of children, men, and women who are having a NO hair day as a result of going through grueling cancer treatment.

I was one of those that really didn't care too much that I had to lose my hair. I even shaved it all off before it fell out so that I could donate it to a good cause (Locks of Love) before it disappeared on me. In a way, I found being bald liberating. I didn't have to wash or condition hair, didn't have to shave my legs or armpits, and didn't have to blow-dry either! But, I did have to contstantly fear sunburn on my sensitive scalp and deal with itchy hats and scarves to protect my noggin. When I couldn't bear to be seen bald I had several lovely hair pieces to choose from thanks to a great wig store in town (Godiva's Secret). But at home I had to deal with my head being freezing cold at night while laying on cold sheets in an air-conditioned house which of course needed to be kept cold because of the crazy intense hot flashes I was having (chemo-induced menopause).

Part of me wanted my baldness to be seen by others in public - I wanted people to remember that cancer still has no cure. The other part of me dreaded having to relive the horror of my situation by answering questions or seeing people stare at the sick bald lady with the one year old in tow.

One year ago today I shaved my noggin for the last time. For those that don't know this, your hair still does grow a bit in between chemo treatments. Not all chemo causes hair loss but many do - mine did. Anyway, the in-between growth was patchy, sporadic and a bit creepy to be honest. So, it had to be shaved off and I would use Bob's electric razor to shave it once per week throughout my treatment from July - December 2009. On Dec.17th, 2009 I shaved it for the last time (my final chemo was on Dec.15, 2009) before heading to a photographer's studio to have my photograph taken. Crazy, huh?

I wanted to document how I looked. I wanted to remember about as much as I wanted to forget. So, here I am, on my final "NO hair day", one year ago.

Photographed by Lee Brubaker Photography

Praise the Lord that I got through a full year post-treatment and here I am just a week ago at a park with my son:

Photographed by Amber Katrina Photography

Thank you, Lord, for your mercy and salvation! I'm so grateful for your healing power and unconditional love. Thank you for leading me back to you. For the brilliant medical care and coverage. For my compassionate employer. For the amazing and supportive family and friends you've placed in my life. For the new perspective. For the daily gifts and miracles. For using me to spread your great news. For every second of precious time.

Psalm 118

1 Give thanks to the LORD, for he is good;

his love endures forever.

2 Let Israel say:

“His love endures forever.”

3 Let the house of Aaron say:

“His love endures forever.”

4 Let those who fear the LORD say:

“His love endures forever.”

5 When hard pressed, I cried to the LORD;

he brought me into a spacious place.

6 The LORD is with me; I will not be afraid.

What can mere mortals do to me?

7 The LORD is with me; he is my helper.

I look in triumph on my enemies.

8 It is better to take refuge in the LORD

than to trust in humans.

9 It is better to take refuge in the LORD

than to trust in princes.

10 All the nations surrounded me,

but in the name of the LORD I cut them down.

11 They surrounded me on every side,

but in the name of the LORD I cut them down.

12 They swarmed around me like bees,

but they were consumed as quickly as burning thorns;

in the name of the LORD I cut them down.

13 I was pushed back and about to fall,

but the LORD helped me.

14 The LORD is my strength and my defense;

he has become my salvation.

15 Shouts of joy and victory

resound in the tents of the righteous:

“The LORD’s right hand has done mighty things!

16 The LORD’s right hand is lifted high;

the LORD’s right hand has done mighty things!”

17 I will not die but live,

and will proclaim what the LORD has done.

18 The LORD has chastened me severely,

but he has not given me over to death.

19 Open for me the gates of the righteous;

I will enter and give thanks to the LORD.

20 This is the gate of the LORD

through which the righteous may enter.

21 I will give you thanks, for you answered me;

you have become my salvation.

22 The stone the builders rejected

has become the cornerstone;

23 the LORD has done this,

and it is marvelous in our eyes.

24 The LORD has done it this very day;

let us rejoice today and be glad.

25 LORD, save us!

LORD, grant us success!

26 Blessed is he who comes in the name of the LORD.

From the house of the LORD we bless you.

27 The LORD is God,

and he has made his light shine on us.

With boughs in hand, join in the festal procession

up to the horns of the altar.

28 You are my God, and I will praise you;

you are my God, and I will exalt you.

29 Give thanks to the LORD, for he is good;

his love endures forever.

Happy Holidays from the Olsen Elves :)

2010-12-15T16:54:00.000-08:00

Happy Chanakuh! Merry Christmas!

Rest in peace, Elizabeth Edwards

2010-12-07T15:00:00.000-08:00

It's always sad when someone dies, even those we don't know personally - celebrities, public figures, anyone that we have admired for one reason or another. But there is a different kind of sadness when someone dies from the disease you yourself have had and fought and fear a recurrence of. I can't explain it except to say it is deeply sad and extremely terrifying.

It makes me so angry that this disease still doesn't have a cure. So much money and effort is put to it and yet cancer is taking over 1500 Americans every day (that's a Titanic ship every day).

Philippians 4:6 (NIV) "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Dear Lord, I beg of you, please bring us the cure. Amen.

The Pink Wig Dance is Here!

2010-11-08T21:16:00.000-08:00

The Pink Wig Dance was produced to celebrate our love for life on the battlefield of breast cancer as young survivors. Armed in pink wigs and hopeful hearts we aim to raise awareness that breast cancer affects women (and men) of all ages. Prancing cancer out of our lives one dance at a time!
Click here to view the Pink Wig Dance!

Please view the video and email the link to your friends and family. Thank you!

Love and blessings,
Julie

Faith - an evolution

2010-11-04T00:48:00.000-07:00

Most people that know me well, especially those who knew me before I was diagnosed with cancer, know that my view on faith and religion has changed significantly since I was diagnosed. I grew up as a non-practicing Christian. As a little kid, mom took me and my brother to church here and there, and we attended Sunday school sometimes but not consistently. When I was in fifth grade and was getting too social for my parents' liking and my brother was threatened with violence on the little league field my parents decided to enroll us in a private Catholic school. Since we aren't Catholic we were exempt from participating in religion class (though we had to sit there and read quietly) and certain activities, we still learned many of the foundations of Catholicism, including the many memorized prayers said in mass. Unfortunately, all the rules and judgment and guilt associated with Catholicism really turned me off and once out of Catholic school I rarely attended church.

I didn't have a good relationship with God, going as far back as when I was a little kid when some really crappy stuff happened to me at the hands of someone that claimed to love me. I couldn't understand how God, if He existed, could let such a horrible thing happen to me or any other child. So, not surprisingly, I became an agnostic young adult. I went back and forth, wanting and needing God to exist and to be on my side but seeing so much pain, struggle made it difficult to trust Him and so I withdrew and became more and more skeptical. I didn't stop praying completely, but I stopped believing it was helping so the prayers become fewer and fewer until finally I found myself one day watching Bill Maher's "Religulous" movie and actually agreeing with most of it just a few years ago when it came out. Wow.

Things began to change after I got married. Poor Bob, bless his heart, thought we were on the same page with this religion stuff. Anyway, we wanted to start a family and I was sure that our advanced age (him being over 50 and me being over 35 at the time) that we may find ourselves unable to do so. I decided to pray. Three weeks later I was pregnant. I figured it was a coincidence since I used a high-tech ovulation predictor to help time things. But at 16 weeks into the pregnancy I was rushed to surgery when it was discovered my cervix was "incompetent" and I nearly lost the baby. Again, I prayed and prayed and prayed, thinking it was a long shot but I didn't want to take the chance because I really wanted and loved this baby. And, even though it was still a long haul after that, including 19 weeks of strict bed rest and nightly prayers asking God to protect my baby from harm, our precious Cooper was born healthy (except for reflux). Hmmm...maybe it was the prayers. Maybe it was just that I followed doc's orders.

Eleven months later I was diagnosed with stage 3c triple negative breast cancer. Found it accidentally after having a highly emotional reaction to my friend and colleague's news that she had been diagnosed with breast cancer just a week before. I had been checked by my doctor every couple months through my pregnancy and every few months after Cooper was born and no suspicious lumps were ever found. You may recall that I went to get a mammogram after feeling a small bump that turned out to be nothing (on the non-cancer side) and that while there for the mammogram the cancer was detected on the other side. A total fluke? Or, was a higher power leading me to make this discovery? Or something else? I know that I sure was lucky to discover it when we did, giving me a more time here on earth to be a mother to my precious young son.

As I began treatment, something in me was quickly evolving. I was seeing life through a new lens - a lens of faith and determination. I started seeing miracles occurring in my life every.single.day. Little things and big things. I couldn't help but think that only God could be responsible for the grace I was experiencing. The more I noticed, the more I prayed. And while not every prayer is answered the way I may have hoped, I believe they have all been answered in some way. And, when I was compelled to find a church where I could explore and develop my new relationship with God, I was led to the most wonderful church in my area, NorthPark Community Church. There I have learned so much in such a short time. I became born again on January 24, 2010 when I was re-baptized, and my faith has been instrumental in my treatment, healing and recovery from stage 3 breast cancer.

I have an uber-long list of examples of the many miracles I've witnessed that have led me to this new place I am in with my faith in God, and someday I will document them and share details. But for now, I just wanted to share that faith really matters, even to this stubborn gal who previously lacked it. And, if you are skeptical or are just the type of person that needs more "evidence", then read and consider the following article about a study revealing the impact of faith and liver transplant survival. This is just one example of many that are out there.

http://www.medpagetoday.com/Transplantation/LiverTransplantation/22530

I believe in the power of prayer. I've seen it work to heal and protect many, including me and my son.

Close family and friends know that my life today barely resembles my life before cancer, largely because of my renewed faith. I never thought I'd say it or believe it to be true but life as a believer is so much richer and fulfilling than before. I continue to learn and grow my relationship with Christ each day. It takes time, work, and most of all - it takes a leap of faith. It would have been wonderful to have gotten to this place without the aid of a cancer diagnosis, but I am grateful nonetheless to have finally gotten here. It's never too late. Praise God, it's never ever too late.

The first Bible verse handed to me to reflect upon after I was diagnosed the summer of '09 was Isaiah 41:13 "For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you." It's become one of my absolute favorites and has helped me through this journey. My friend and neighbor, Cindy, gave it to me on an index card and it has been taped to a wall mirror near my bedside ever since. Thank you, Cindy! I know God placed Cindy in my life to help bring me back to Christ. I'm so grateful for that.

Please vote for our video!

2010-10-11T14:34:00.000-07:00

I joined up with two other breast cancer survivors and lifelong friends to create this entry in the Feel Your Boobies video contest. Please view it and vote for us. We will be launching the Pink Wig Dance soon and we hope you find this as fun and entertaining as we did while we wait for the PWD launch.

PLEASE VOTE FOR US!!

http://youboob.feelyourboobies.com/contests/showentry/462878

Thank you!!!

Love and blessings,
Julie

Pink Wig Dance day was so much fun!

2010-09-26T21:52:00.000-07:00

We had a blast! A bunch of breast cancer survivors and friends gathered in downtown Los Angeles yesterday and had so much fun dancing and filming for our viral video. Here's a shot of the group having some fun.

Top row: Laurel, Sierra, Nicole, Lisa, Isabelle, Mary Lou, Middle row: Allison, Julie (in polka dots), Mandy, Bottom row: Jessica (in stripes), and Tira (purple hair tie and pink top).

We can't wait to see the final video - it is going to be so awesome. We got SO MUCH great footage to use! I've been laughing for 24 hours just remembering all the fun and silly stuff we did. What an awesome, blessed day we had! God truly graced us with His favor - gave us the most amazing set to shoot on, great (though hot) weather, the perfect group of dancers - the list goes on! Stay tuned for fun out takes and clips from this great project. I can't wait to get my hands on some clips to share with you.

Oh yeah, at the end of the day, me, Jessica and Tira shot a fun breast exam public service announcement that we're entering into a contest. As soon as we have that ready to share we'll post it and ask you to please vote for our video :).

Thank you, Lord, for such an amazing and blessed experience. No matter how the video turns out or how successful it is once we launch it, you have surely given me a most rewarding and wonderful experience bonding with these amazing women.

Special thanks to Gerry (Jessica's awesome hubby) for directing and filming the group - you were awesome! :)

Post-op Update - Feeling great! PTL!

2010-09-17T14:38:00.000-07:00

Surgery went very well yesterday. The team at UCLA is always so professional and compassionate. I always manage to have a little fun with them too.

I mentioned in a post recently that I'm working on a project called the Pink Wig Dance. We are three survivors producing a viral video of survivors and loved ones wearing pink wigs, dancing, and posting for photos that will be spliced together in a short video set to a great tune and posted to the internet to raise awareness that breast cancer affects women (and men) of all ages and walks of life. It's our way to unite and celebrate life in the process of raising awareness. We have a blog with our mission statement and instructions for how to participate: www.pinkwigdance.blogspot.com and you can email the team at pinkwigdance@gmail.com.

Anyway, I brought a couple of pink wigs along to the hospital and explained what we are doing and managed to get my surgeon and a couple of residents to put the wig on and pose for pictures :). Like I said, UCLA is awesome! :) I'm so grateful to them for the incredible care they have given me and for helping me through this journey by participating in other ways such as humoring me and supporting me emotionally as well as physically. I've posted the pics below :)

More about the surgery -- the anesthesiologist agreed to use my port one last time to push the first dose of medication to get me drowsy and then switch to an IV in my arm once I was asleep so I wouldn't have that icky IV placement feeling which I so hate. I had put the numbing cream on the skin over the port when I got dressed in the morning so it was fully effective by the time they put the line in.

With one push of a syringe, they began the process of making me sleepy - I was getting general anesthesia once sleepy since they were doing both nipple construction and port removal and incision revision. I was awake as they wheeled me into the OR and was moved onto the operating table and then I was out like a light. I love that. Even better is that my body handles anesthesia really really well. It works well and I handle it well. I've never become nauseated or felt sick from it any other way. I woke up two hours later, opened my eyes and looked around as if I had woken from a nap. I could feel a little soreness on the port removal site but felt no discomfort at all on my breasts - probably because my breast skin is mostly still numb from the original bilateral mastectomy.

Bob handed me my blackberry (he knows me well!) and then he headed down to the pharmacy to pick up my medication (antibiotics and pain medication). I read my email, responded to some work emails (I know, I'm nuts), texted some friends to let them know things went well and I'd be home soon, updated my Facebook status, etc. I know, I know, I'm addicted haha. When Bob returned we got my post-op instructions and a wheelchair escort who was kind enough to take me to the Simms/Mann Center for Integrative Oncology one floor down so that I could drop off a bag of standard stylish wigs donated by a wonderful and generous church member for the women in the breast cancer support group conducted there. That's the same support group I attended weekly throughout my treatment. The facilitator was thrilled to receive the donation and promised to bring them to the group next week to offer them first dibs and any that don't get taken by the support group members will be given to Helen's Room where patients can get free donated wigs while in cancer treatment.

Once that was done, I was wheeled down to the parking garage entrance where Bob had the car standing by and ready for me to get in and head home. We were home by 2pm.

I've been taking it easy, taking my antibiotics as instructed, limited my activity (no lifting over 5 lbs, no reaching overhead, etc.) and have only taken two pain pills in 24 hours. I OK without it now which is great, especially since the side effects (digestive in nature) are not pleasant and I could do without THAT which I would find worse than the soreness from the surgery haha. Besides, I need to be able to drive tomorrow so no more pain pills for that fact alone.

I'm glad I took today and Monday off from work to recover so I can really rest and get some good sleep and make sure I'm not doing anything stressful. Unfortunately, Bob has to go to work tomorrow morning so I have to be diligent and remember not to pick Cooper up which will be a challenge, especially when I need to go anywhere. So, I have a 2-step fold up stool that I'll need to have Cooper use to climb up into the car into his seat and take that along with us when we go anywhere. Tomorrow I have my friend watching Cooper when I head out for a couple hours while I get out of the house for a couple of hours so I won't have to worry about it then and she'll watch him again Sunday when I'm at church so at least it'll be a couple days before I really need to get him into the car so that's good. I know I can call several other neighbors to help though if I need help getting him lifted into the car in the event the stool option doesn't work out. I'm so blessed and grateful to have such wonderful neighbor friends.

Once I've fully healed from this step of the process, the next step will be to get the nipples tattooed. If you google nipple reconstruction you will be amazed by how natural these fake nipples turn out. I'm excited to finally look and feel "normal" again - before the end of the year, even. Yay! Of course, those that know me well know that I would have been ok without reconstructed breasts too. I'm all about living - being alive - to me, that's all that matters and the rest is icing on the cake.

Now for the pre-op pink wig fun....

Me with Dr.Crisera

UCLA Resident physicians Mandeep Sehmbey and Victoria Vo with me


Bob Olsen - my husband :)

So there it is - I'm so blessed to have had another very successful surgery at UCLA. I can't say enough wonderful things about them. Thank you, UCLA!!!! Praise the Lord for such a wonderful team of health care professionals, for my excellent health care coverage, and the support of family and friends. I will never take these things for granted or underestimate their immense value. xoxo

Love,

Julie

It's a big deal

2010-09-15T23:57:00.001-07:00

It's a bigger deal than I thought. In May I was going to get nipples constructed and have my port removed during same visit as the hysterectomy. But the plan changed when the lymphedema swelling resulted in one breast being larger than the other so instead it became implant swap out, minor revisions for symmetry, and hysterectomy/oopherectomy and keep the port til the next surgery so I could use it for another zometa infusion.I was relieved even though the port gets in the way sometimes when trying to cuddle with Cooper and he presses on it or puts his head on it and that hurts or when the line up into my neck gets irritating and causes swelling which looks and feels like a swollen neck node on that side, causing me to panic even though Dr.B says it's ok.

This thing has been an incredible blessing - helping me painlessly (mostly) endure countless blood draws and 12 chemo infusions and 2 zometa infusions, and even used it in my two recent surgeries to get me asleep without discomfort. It has spared my arm veins from being mangled at a time when they would be vulnerable (chemo) and helped me protect my arms especially the left one with lymphedema since it can be poked (too risky for infection and swelling danger).

I've had two clean PET scans since finishing chemo - Feb.1st and Sept.7th so now it is time to say goodbye to my port. Praise God, I don't need it anymore! Every time I say, think or type that I begin to cry. Joyful tears. Maybe some nervous tears mixed in too.

Tomorrow morning I go back in for nipple construction surgery and the port will come out and the scar revised to clean it up (it's ugly/angry looking). As I was getting ready for bed tonight it finally hit me. I'm done (with cancer). Treatment is done (minus the zometa bone protection I will get quarterly for 2.5 more years, the quarterly blood draws and follow ups and of course the nipple tattoos as the final step in reconstruction).
I really am a survivor! From stage 3c to "cancer-free" in 15 months. Wow. Praise God!

I am living proof of the Lord's power and miracles. He woke me up and set me straight and I am listening (and learning). He showed me His work in my life daily through this journey (and ongoing) - with the most amazing support network (you included), the most loving and supportive husband so certain of my complete cure and healing, brilliant and compassionate physicians, nurses, administrators (except for a couple - remember my first attempt to get a port!?), a generous and caring mother and father who came to help whenever I asked...an incredibly supportive employer and team at work who patiently and generously gave me the time I needed to get well without the fear of losing my job or health coverage. The exact right caregivers at the exact right time for my precious Cooper. A bearable (albeit challenging) course of treatment with limited and tolerable side effects. My many friends, family and colleagues who wrote, called and sent generous thoughtful gifts to cheer me up and donations to fund breast cancer research in honor of me! Awesome neighborhood friends who checked in on me, brought meals, helped with Cooper and the dog, and kept me company when being alone was unbearable while Bob was working. God led me to my new church home and family a year ago where my faith in God and mankind has been restored and raised to levels I didn't know were possible. And, of course, He brought me to the bravest, most beautiful warrior sister survivors with whom I share an unbreakable bond for life.

These are the works of an almighty, merciful, forgiving and instructional God who has transformed me and I believe is using me and I am so amazed, so blessed, so grateful. Thank you, Father, for these blessed gifts. I am humbled, grateful and determined to become worthy of them. Please continue to use me, Father, to spread the good news and glorify you in my thoughts and actions. Guide me, Lord, and help me to not stray. Forgive me, Lord, when I do stumble as I often do. Take my worries and fears, Lord, and help me live beyond my own abilities and fulfill your will for my life. Thank you, Father, for your healing and your mercy for me and so many others.

Lord, please wrap my friends Michelle, Theresa, Tracie, Tonya, and Sue in your love and light. Infuse their bodies with healthy fighter cells and medical ammunition to destroy and eliminate the cancer that has taken residence in them. Give them continued strength, hope and faith in your promise and word and bring about complete cure and healing as I know you have big plans for these warriors here on earth.

God, please hurry and show us the cure for all cancers.

This, I pray, in Jesus' name. Amen.

Faithfully,
Julie

911 Every Day -- Please Stand Up 2 Cancer

2010-09-11T13:20:00.000-07:00

Did you know that:

1 out of every 2 men, and 1 out of every 3 women in the U.S. will be diagnosed with cancer. :(

Every 60 seconds, someone in America dies of cancer :(

1500 people die of cancer EVERY DAY (that's equivalent to the Titanic tragedy DAILY) :(

Cancer accounts for nearly one-quarter of all deaths in the U.S., exceeded only by heart diseases. :(
1.5 million new cases of cancer will be diagnosed in 2010 in the U.S. :(

Cancer isn't a one-time tragedy with a one-day anniversary. It doesn't discriminate. It can't be stopped at our borders and our military can't protect us from it.

Will you please STAND UP 2 CANCER?! Please DONATE to the Stand Up 2 Cancer foundation where 100% of all donated funds go directly to innovative, collaborative cancer research.

Together, we CAN and WILL find the CURE. We MUST!

Watch the 2010 Stand Up 2 Cancer show here.

PLEASE DONATE here.

THANK YOU!

CLEAR! Dancing with NED!

2010-09-09T11:32:00.000-07:00

The doctor just called. The PET/CT results were NEGATIVE - NORMAL! NO EVIDENCE OF DISEASE! I'd be lying if I said I didn't hang up the phone, look up to the sky and thank God immediately and then sob like a baby. [Insert huge sigh of relief]

I'm so grateful to the Lord for His mercy and trust in me. I will not let Him down.

Thank you all, so very much, for your prayers and support. I'm so incredibly blessed and grateful.

Romans 8:28 (NIV) And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Deuteronomy 6:5 (NIV) Love the LORD your God with all your heart and with all your soul and with all your strength.

The waiting! ;/

2010-09-09T10:06:00.000-07:00

I'm sitting here at my desk trying desperately to concentrate on work. Muddling my way through my to-do list while a fog of anxiety floats around my head. Tuesday morning I had a PET/CT scan. I'm grateful that these tests exist because they can bring peace of mind when the results are good news. But the waiting to hear the news is nothing short of torture. Even when there is no reason to suspect anything but good results, it's torture.

I'm anxious to hear good news so I can breathe a sigh of relief. But I worry about wasting precious thought time/space in the event that it's not good news. Will it be clear? Will it be not clear? Will I be dancing with NED again? (NED = no evidence of disease) Or won't I be?

I try so hard to give my worries over to the Lord since only He knows where my life path is heading. He is in control now, not me. It's hard though. So very hard. I've spent over 37 years thinking I was the one in control and old habits are hard to break.

I go from thinking about all the awesome things I have planned for my future to thinking about whether any of it will even be possible. I wonder why my friend and sister warrior got her awesome news of her clean scan results this morning already even though her scan happened after mine at the same facility. So I called my doc's office and asked if the report was in yet. No. Insert heavy sigh. Then I think why am I in such a hurry to know when I'm alone today. Sure, I'm interacting with people online and by phone for work, but Bob is away and Cooper is at daycare and I'm here with my computer and phone, remembering the last time I was alone to receive test results and it was not good. Dear Lord, please let it be good news. And please help me accept it if it's not good news. Amen.

Philippians 4:6 (NIV) Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Young survivors unite - and dance!

2010-08-29T13:45:00.000-07:00

The local chapter of the hair club for women (what us sassy young breast cancer survivors are calling ourselves) invites all young breast cancer survivors (and their friends, families, physicians, etc.) who wish to join us to celebrate life as survivors as we don our pink wigs and dance around while being filmed. It's our own answer to the pink glove dance video that's all over the internet.

If you'd like to join us, send an email to Tira (see pic below for her email address - click on the picture to enlarge it) and she'll get you the details. We'll be dancing and filming on Saturday, September 25th, somewhere in the Los Angeles area. We hope you'll join us.

BUT, if you're not in the area or can't join us in person for any other reason, you can still do it: take video of yourself and your peeps and email it to Tira. :)

A makeover!

2010-08-25T17:44:00.000-07:00

I'd love to get some hair extensions to catapult me past this transitional hair regrowth phase right into a preferable "normal" hair phase but my hair dresser tells me that they'd look awful since my hair is so short. She said I'd need it bob-length for it to look natural and that just isn't helpful since bob-length is the actual goal. Since learning more about the dangerous chemicals in skincare and cosmetic products, I'm not interested in facials and make-up style makeovers so what is a gal to do!?

So I figured...if I can't have much say in the hair department just yet, and I can't afford to resume my former addiction to designer handbags (I'm broke) or spa visits (no exposure to hot temps in hot tubs, steam rooms and the like due to lymphedema), why not a blog makeover!? I just selected a new template using the new designer - what do you think?

And while I'm on the subject of blog administration, I'm curious to know what else you might be interested in hearing from me. I'm tossing around some ideas for a website and I realize that my blog followers have different reasons for following. Some of you are survivors, some are friends or family members of mine or of other survivors. What types of things would you like to hear more about from me? Don't be shy - please comment.

AND, I have it on good authority (love you, Mom - you're such an effective snitch! haha) that there are a lot of anonymous followers that have never commented before and I want you to know that comments make me feel great and help keep me blogging. So, please do comment - I love hearing from everyone (OK, well not from the spammers - but from everyone else I do). If you have a blog that I haven't seen, please tell me about it.

Have a blessed day!

1 Peter 4:8 (NIV) Above all, love each other deeply, because love covers over a multitude of sins

Been busy....living! =)

2010-08-12T21:53:00.000-07:00

I know, I know, I've been a bad blogger - I'm really behind in updating you on my latest adventures. I'm sorry! But I have a really good excuse though - I've been busy living!

Life has become hectic again now that I'm back to work full-time, but I have kept my promise to myself that it wouldn't take over my life the way I've allowed it to in years past. I now work to live, not live to work. In fact, I've been busy making sure that we are doing fun things in my off hours, even taking days off to take fun adventures away from home.

We've been having dinner picnics in the park on free concert Saturday night, we enjoyed the 50's bash/picnic at our church, and Cooper and me even took a trip to Ohio to meet up with 35+ other people in a lodge for a few days of fun fellowship! Our Ohio trip was AWESOME. We met up with 12 other moms and their kids - there were 13 two-year-olds, and as many as 10 older children there with us in a beautiful 6-bedroom lodge in Hocking Hills, OH. I met these wonderful women through an online pregnancy support group when I was pregnant with Cooper over two years ago. Many of us (up to 100) keep in touch via Facebook and a bunch of us thought it would be fun to meet up so we flew out to meet up with the Midwest gang and we're so glad that we did. I am so incredibly blessed and to have these amazing women in my life. What an awesome time we had and we hope to do it every year.

On the way home from Ohio, Cooper and I had quite the adventure GETTING home. Flying standby is hard enough but when you are a non-revenue (non-paying) standby passenger things really do get interesting. We started out in Columbus and couldn't get on the direct flight back to L.A. Since Columbus isn't a hub for Delta we realized we had to get out of there and to a hub if we wanted to get home so we hopped a flight to Detroit which had a couple open seats. Unfortunately, once in Detroit, we were unable to get on the remaining flights out to L.A. that night so we spent the night at the Westin in the airport. That turned out to be fun though - sort of. Fun that we got to have hot shower/bath, room service and sleep time in a heavenly bed but not fun that we had to fork over the big bucks to do it. Oh well! Middle of the night the room filled up with cigarette smoke coming from an adjoining door to a room next to us. Called security and they could smell it but the neighbor denied smoking and there were no other rooms to move to (they were sold out) so we had to crank the A/C to try to force the smoke out and go back to sleep. In the morning I asked for a discount and got the bill reduced to half which was a huge relief because Westins are not cheap at all - especially not the airport attached hotels where rooms quickly become a commodity.

The next morning we watched as 4 L.A.bound flights left without us and then my husband had a brilliant idea and he instructed me to head over to the gate for a flight to New Orleans. I joked with him that I appreciated him wanting me to extend my vacation by sending me somewhere fun and then he explained that he could see in the system that there were open seats on that flight and a flight to L.A. an hour or so after arriving in New Orleans with open seats on that one too. I asked him why the gate agents didn't know this and suggest it after seeing me and Cooper get denied seats on several flights and he said they just look for open seats at the major hubs (New Orleans isn't one of them) because they're so busy dealing with everything there at the
gate. Makes sense. So, thanks to my genius husband, the plan worked brilliantly and we finally got home to L.A. late Friday night. I learned a lot from that trip - about what we can and can't live without in our carry-on bags (can't check bags when you're non-rev standby) and how to find creative flight paths home when your first 3 (or more) choice flights leave without you. So now I'm even more ready for the next adventure!

My arm weathered the trip pretty well. At first I didn't think so because it looked worse from all the pressure changes of several flights and hauling bags and a car seat on wheels with Cooper on it. However, my lymphedema therapist measured me on Monday and in spite of it looking worse, only one of ten measurements had gone up and only minimally. Praise God for that miracle! Once we realized the measurement results she looked up at me and exclaimed "you can fly!" haha. Yes I can!

I'm excited for our next adventure...a trip to Reno in the beginning of September to visit my BFF Diana and her awesome family - they're moving there this month following her husband's early retirement from the Army due to combat-related injuries from the Iraq war. Her husband, John, is an amazing man who has made great sacrifices for our freedoms and I am forever grateful to him and to his family for the sacrifices they've made for all of us. Thank you, Hartleys! I love you!

Who of you by worrying can add a single hour to his life? http://read.ly/Matt6.27.NIV

The church support ministry that I co founded has been moving along nicely with our monthly meetings. I've met some most amazing people and I'm grateful to God for putting it on my heart to start the group. There are other things I know He's calling me to do - I see signs everywhere I turn and I have intentions to follow through. I just need to shuffle my time around and find a way to make time to do it. I will. Meantime, I pray that He helps guide me to moving things around to make it possible to fulfill all of my obligations and while enjoying life too.

Love,
Julie

I'm a vessel

2010-07-18T16:12:00.000-07:00

Among my many daily prayers, I ask God to use me - to work through me to serve Him by helping others. I know He is answering my prayers because I'm seeing it every day and it is thrilling - truly thrilling.

Just one recent example...I've been dealing with a flare up of lymphedema of my left arm and while that is not fun - it's uncomfortable and frustrating, actually - it has brought be back to my lymphedema therapist, Richelle. Richelle is brilliant. She understands the lymphatic system and can easily explain it to others, like me, who had no idea that such a system even existed in my body. She is trained and certified by the best source of lymphedema thereapy education - Vodder - and she is highly sought by patients from all over California and some patients even come from out of state to get their therapy from her. She has an invention that has been tremendously helpful to me in a few ways - I can't describe or show it because it's not yet protected (patented/copyrighted) - and I know it would be of great value to others with lymphedema but Richelle hasn't yet pursued ways to bring it to market - at least not yet - but I would love to see it happen to help others improve their quality of life with lymphedema and for Richelle to be rewarded creating it.

During my previous flare-up (during radiation treatment in February), Richelle and I would talk during our sessions about how there is a shortage of skilled therapists and how she could have a positive impact on patients like me by helping educate us on proper prevention, treatment and maintenance. It's hard for one person to reach the masses of those that are affected by the condition - or could become affected by it when they have surgery and other cancer treatment that puts us at risk for lymphedema. With my background in training, I made some suggestions on things she might consider doing and she seemed interested and excited about the ideas but she had to have surgery herself and focus on that and her current book of patients for the time being and my work with her was short (two weeks) and then I wouldn't return for more treatment until there'd be another flare up. Fast forward to now...

I'm seeing Richelle 4-5 times per week for a two-week treatment protocol to work on my arm to move the lymph fluid out of my arm. During my sessions we've begun talking again about how she can reach more patients who need her help and enable her to establish a practice that reaches distant patients without requiring them or her to travel. I loved seeing her eyes light up as I described an idea that came to me as I was driving to my appointment. At my most recent appointment she mentioned her plans to talk to some others she knows that may be able to help her figure out how to act on one aspect of the idea and I got this awesome feeling that I had sparked something for her. I was grinning all the way home that day and it's a 35 minute drive.

Some people (non-believers, mostly) might think of these kinds of things as coincidences - even I used to view it that way - but I know there's no such thing. God puts is in places and circumstances that are essential elements of His plan for our lives. I love that God gave me lymphedema so that I could help stimulate the start of a practice that could help so many others with the condition by making Richelle's brilliance more accessible.

Today I attended the second meeting of a cancer support ministry I co-founded at my church. This ministry came about because God put me in a church membership meeting to meet another cancer survivor, Rob, who shared my desire for an opportunity for fellowship and outreach with other Christians facing the many challenges involved with cancer. At the meeting, our Pastor said to the group that if you see a need then create a solution and the church would support and help nurture it. Rob and I met just moments after that statement was made and learned that we were both going through this and agreed that it would be great if we started a group. A month later Rob and his wife hosted a small group at their home as part of a Bible Study series that I attended and we got to know each other better and continued discussing how God had placed us together to start something and just 5 months later we started "Triumph" - a cancer support ministry for survivors, patients, caregivers and loved ones of those affected by cancer.

We all have our belief systems and certainly mine has evolved over the years from being a casual believer to being a major skeptic until I saw first-hand the works of God in my life as miracles were unfolding before my eyes every day once my cancer journey began. Although only God knows His true purpose for my life, I feel Him revealing it to me little by little each day and I continue to pray and ask Him to show me how I can serve Him with my life and I love how He is responding. Even the "unfortunate" circumstances I find myself in (i.e.,lymphedema) are blessings to be celebrated as they are all part of His plan - opportunities to serve and make a difference, however big or small.

False alarm! Yay!

2010-07-15T10:44:00.001-07:00

I'm so happy and relieved that Dr.B has checked my neck and he firmly believes it is not a lymph node that's enlarged but an irritated area likely from my port. He does not feel it is abnormal or cause for concern.
Thank you, God, for your protection and peace. Thank you, friends and family, for your prayers.
I sometimes feel guilty when I've asked for prayers or shared my worries and it turned out OK. But I can't allow myself to worry in secret and not get the prayers because that has not worked in the past and I KNOW the power of prayer. I am deeply grateful for all the prayer on my behalf and always will be.

Love,
Julie

PS - I have many posts on my mind and I'm sorry I've been so silent on the blog - its been a busy summer getting back to work and focusing on having fun and living life to the fullest. I want to share it all with you though so I will be working on that.

Chemo-versary and prayer request

2010-07-14T11:56:00.001-07:00

One year ago today, at about this time, I started chemotherapy. I was excited and terrified too. I was thrilled to be able to assault the cancer as it had felt like eternity since finding out I had cancer. The doc suggested I take an anti-anxiety med before arriving and when they got started I received benadryl too (in case of an allergic reaction to the chemo) along with the anti-nausea meds before the chemo drugs began to flow. I was really out of it yet totally aware of what was happening. Totally aware of how blessed I was to have found the cancer at stage 3 instead of 4...totally grateful that God made it possible to receive the life saving drugs that flowed through my veins that day and for six months following. Incredibly grateful for the support and love I received to help me through it. On this chemo-versary I just had a follow up visit at UCLA. I pointed out an area of my neck that doesn't feel right. The nurse confirmed it is a swollen lymph node. She asked who my oncologist is and when I'd be seen by him again. I see Dr.B tomorrow for my Zometa infusion. She asked when my last and next scan was/is. Next PET next month. She said it's probably my body fighting off an infection but he may send me for an ultrasound. Fuck is the word that comes to mind.

These uncertain times are difficult. I'm calling on God to bring me calm and peace to help me get through and fight off the fears that the enemy whispers in my ear. I'm fighting back. It could be unnoticed congestion from flying recently. It could be I'm on the verge of an ear infection or a cold.

Please pray with/for me. Thank you.

Isaiah 41:13
For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

Life is good, God is great!

2010-06-24T07:32:00.001-07:00

That is all. For now :)
Sent from my Verizon Wireless BlackBerry

Emerging from the fog...pushed out of the nest...into the new "normal"

2010-06-08T15:45:00.000-07:00

My primary treatments were completed at the end of March. As is commonly the case, I continued to experience some of the common and annoying side effects from both chemo and radiation. Fatigue, foggy brain, short-term memory challenges, premature menopausal effects like aching bones, hot flashes, and so on. However, you won't hear me complaining about these things because frankly I'm grateful for all of them because it means I'm alive!

Cancer treatments - including surgeries, chemotherapy, radiation therapy, and for some targeted therapies - are not fun. While they target the cancer they damage healthy cells and systems of the body and it's a crap shoot in terms of what effects and damage one will have on the other side of the treatment regimen. Some of us are luckier than others when it comes to side effects, short- and long-term. Though, I happen to believe that if you're a survivor you are blessed - period. And I believe that we experience things the way we choose to experience them (or the way we're convinced we will experience them). Two people can have the exact same side effects and still have the exact opposite experience coping with them. Our ability to cope (or lack thereof) is ultimately what represents how we choose to be affected by things. Some dwell on their ailments and let them rule their life or use them as excuses for not owning their life and moving forward productively. Others embrace the new knowledge and understanding and find ways to use that to help themselves and others. If you have been following me on this journey you know by now which category I fall into.

Early on in this journey I made a decision to live. I also made a decision to give it (treatment) my all and to see it as a blessing from God. The chemo drugs that some view as poison, I saw as God's liquid gold cure juice running through my veins and disintegrating diseased cells. The radiation treatments that some view as nuking their insides, I saw as God's light and love surrounding me like a layer of protective armor squeezing out any last rogue cancer cells that may have been hiding out. I truly believe that my choice to view treatment in this way, and my renewed faith and relationship with God got me through the treatments without knocking me down physically and mentally.

Don't get me wrong - I had some seriously crummy days. Every chemo cycle was a bit harder than the previous. Eight cycles (12 chemo doses) is no walk in the park. I was so exhausted that every moment I was alone with my son I had to have planned out to help me get through it without falling asleep and leaving him unsupervised. And when I couldn't stay awake any longer I would take him into a gated and child-proofed room of the house where he could play and be entertained while I sat on the floor or a couch and not be fearful if I were to fall asleep.

There were days I couldn't stand for more than 5 minutes without losing my breath and balance. I put up with a watering eye, muscle twitches and spasms, and neuropathy in my hands causing me to drop and shatter a number of glasses because the chemo was damaging my nerves. My digestive system was a mess, alternating between having the runs 24/7 to being constipated for weeks and weeks. The hot flashes were intense and frequent - feeling like I'd been lit on fire and then immediately thereafter felt like I'd been shoved in a bucket of ice. When I would finally fall asleep at night I'd either be woken by a hot flash or my toddler son who still does not sleep through the night (he turns two this month).

Sleep was such a challenge and problem for me that a number of times I actually got a hotel room and took sleeping aids to get a good night sleep when my husband was home and could get up with our son while I focused on getting some sleep down the road at the Hyatt.

My mind wasn't sharp. I forgot things. I lost track of things. I'd start a sentence and forget what I was talking about - frequently. I'd be convinced I told my husband something but really had only thought about telling him (or so he tells me haha). Frankly, the chemo brain fog is the side effect that frightened me the most because I was terrified that I'd slip up and cause harm to my son when I was alone with him. I was terrified I'd forget him in the car or that I'd screw up administering his medication because I wasn't thinking straight all the time and was exhausted. I was terrified of letting my colleagues down or even losing my job when I was working part-time during the 2nd half of my chemo regimen because I was so forgetful and easily confused.

When I was in the home stretch, starting the final treatment chapter of radiation, I developed lymphedema and had to begin another series of treatment for that. I came back out of work and onto disability status because it wasn't possible to give work and my health the time they both needed to do it right since I had daily radiation and 3x week physical therapy sessions. I felt defeated at first because I wanted so much to feel "normal" again but as I went on and prayed I realized that God was looking out for me when he let my arm swell up - He knew I wasn't being honest with myself about what I could handle and that it was just too much and I needed to refocus on treatment and less so on other things so at the end of February I stepped back out of work.

All along the way I was still OK through this craziness. I decided I would be and I was. I asked God for the strength to push forward and He gave it to me - in the form of internal motivation, support and encouragement from friends and family, and more. I know how much worse it could have been - I've witnessed it first-hand with a friend that lost his life to cancer in '98 and with dear friends in my life now who had different experiences with their treatment. I have been blessed profoundly.

I was/am alive and every side effect, every discomfort, was/is a reminder that God wasn't/isn't finished with me yet. That these temporary issues are just that - temporary. And that even if they were long-lasting, they are far better than the alternative which simply was not an option for me. I choose to live.

As much as we (survivors) want to hurry up and get back to "normal" following treatment, we realize that it's a more challenging feat than just resuming your former life. It takes time for chemo meds to get out of the system. It takes time for the skin to recover from radiation. It takes time for the arm and breasts to recover from surgeries. It takes time for the brain fog to clear (think pregnancy brain only far more intense and longer in duration) and resume proper firing of neurons and the like - you know, what's needed for normal and complete thought processing and healthy memory activity.

I'm grateful that I've been blessed to have the support network, the insurance policies and the compassionate employer that have all allowed me the time to focus on not just beating the cancer but healing from the treatments and having preventive and reconstructive procedures so that when I return to my "normal" life, I will do so confidently knowing it truly is time to move forward, to turn the page to the next chapter.

My new "normal" has many things that are the same as before - my place of work, my family, my friends, my home - praise God! But my new "normal" has many new things too - my lifestyle and priorities have incurred an extreme makeover. For example, God is #1. My health (and my family's) is #2. Everything/everyone else comes after these and just about every position on my list has changed in the past year. Those who know me well will recognize how major a change this is for me.

This week (tomorrow!) I am going back to work and I'm jumping right back in with both feet - full-time. In addition to my realigned priorities and getting back to work, I have new missions to accomplish. One being the new cancer ministry that I'm co-founding at my church this month! Another being a book I've begun to work on with two of my breast cancer sister survivors. I must be careful about biting off more than I can chew but I also must move forward and avoid the temptation to rest and recover for too long.

I hope and pray that this next transition will be smooth and that I will receive God's favor and mercy to allow me to return to work with a stronger and healthier body and a sharper mind. I ask the Lord to help me do my very best to serve and support my team and to set healthy boundaries that enable me to honor my new priorities and help me stay healthy. I'm so grateful to be able to return to work at a time when so many others don't have jobs. I pray that God will use me to fulfill His will and purpose for my life in every venue that I enter. That He give me the patience needed to figure out what that purpose is and how to be the best I can be. I pray for forgiveness for when I falter, which I admit is often, and for guidance on how to stay on the right path. I hope and pray that I can use my story to acknowledge that cancer is a real bitch but that it can also be a real blessing in the form of positive changes in a survivor's life.

Thank you, Lord, for giving me another chance to to make every day count - to find your purpose for my life and fulfill it, however long it may take. Thank you, Lord, for pushing me out of the nest and back into [my new] "normal" and ever so blessed life. I won't let you down.

Wow! Breast cancer vaccine being tested!

2010-05-31T13:04:00.000-07:00

Tears of joy keep streaming down my face as I daydream about this news story. Praise God it's gotten as far as it has and the testing continues. Wow. God is amazing! He makes all things possible.

On this day, one year ago...

2010-05-28T12:33:00.000-07:00

On this day, one year ago...

...I was told that I had breast cancer
...I didn't know if I'd be alive much longer
...I didn't know how I'd get through it
...I didn't think I could do it

On this day, one year ago...
...I knew my life would change forever
...I didn't believe that cancer could be a blessing
...I didn't have much faith
...I was terrified of what was ahead of me

On this day, one year ago...
...I didn't know how much support I would have
...I didn't know God well at all
...I didn't know I could help myself or anyone else
...I didn't know I'd be a survivor

On this day, May 28, 2010, I am a one year survivor of
stage 3c triple negative breast cancer.
On this day, I'm filled with faith and hope. On this day, I'm living proof that God is AMAZING! On this day, I'm unbreakable.

Crazy hair and surgical tape halter tops are "in"

2010-05-19T20:14:00.000-07:00

...lower girlie parts are "out".

Surgery went really well yesterday. I went under at 7:30am and woke up around 11:30am with a new left boob, a revised right boob, and no more uterus, ovaries and cervix. Woot!

Once in my room I had to launch into my role as my own patient advocate rather quickly when I learned I was not getting any iv pain medication (just vicodin which didn't work for me last time) and I was only being permitted to have ice chips for 24 hours! I called a meeting with the RN and the in charge nurse and explained what happened last June when my pain wasn't proactively controlled and they agreed to order that the nurse on duty is to come offer me pain meds (demerol by injection) every four hours rather than wait for me to ask for it (because by the time I would really need it, I'd be behind the pain and in trouble trying to get caught up like last summer). Ever since the meeting they've done a wonderful job tending to my pain med needs and I'm very grateful for that. So...if this post is rambling or in any way confusing, I blame the demerol.

I went without food or beverage of any kind (only allowed ice chips and sips of water) from Monday night at 9:30pm til lunchtime today (Wednesday)! Not cool. Apparently they were starving me so that I wouldn't vomit even though I've assured them I had no nausea whatsoever. Thank God for my lovely friend, Jessica, who brought me some contraband - an organic blueberry smoothie, organic blueberries and some other goodies that I could slowly consume while waiting for the doctor to change my dietary orders so I could have a real meal. Thank you, Jessica!!!!

My dietary needs had to be taken up with the doctor. When one of the residents came to talk to me about it he explained the main concern was that I'd get nauseated and vomit (my translation of that was that they didn't want to have to clean up the mess so it was easier for them to starve me). He advised that I shouldn't eat anything, including the beautiful organic blueberry smoothie that Jessica brought me. Since they were mainly concerned with me vomiting but not expecting any other gnarly side effects of consuming something I thanked him for his advice and proceeded to cautiously sip on the smoothie. Thankfully, I've never had any nausea or vomiting from anesthesia and this is my fourth surgery since June '09 (all performed here UCLA).

The subject of the catheter came up and I explained that I was feeling pressure and the need to go to the bathroom. He told me to use the bed pan (by the way, sadly and hilariously funny is the fact that the bed pan is pink). I raised both hands and showed him how on one hand I'm tied to an iv tube and the other hand a pulse-ox cable and then lifted the blanket off my legs and showed him the compression garments and cables attached to both of my legs and asked him to instruct me on how exactly one should go about wiping their rear end while laying down and tied to all this stuff. He suddenly realized I was serious and not some little kid trying to get out of doing her homework. I seriously considered using the bed pan and I seriously resolved not to. I recommended he take the bed pan home with him and try it out so that he'll know how patients feel when faced with that as their only option for relief while tied to the hospital bed. He laughed, nervously, and admitted that really every doctor and nurse should be required to do that so they'll know how patients feel. I agree. Somehow I doubt that he'll follow through to find that out.

Oh, and in addition to both arms and both legs being attached to tubing, I had a catheter attached to me too and that thing was really cramping my style this time. I tried to convince them to take it out last night but they wouldn't take it out til this morning. I really did not want to use the pink bed pan and was determined not to and thankfully I managed to avoid it.

I was visited by several doctors today, including my favorite Dr.Crisera (plastic surgeon, aka Dr.McHotty, aka Dr.C) :) and we agreed I could/should spend one more night because they want to see to it that I can handle solid foods and once I get home Cooper will be all over me and wanting me to pick him up which I can not do for 2 weeks. Dr. Heaps (OB/GYN surgeon, aka Dr.H) came by shortly afterward to check on me and he too agreed I should stay the night and he told me that everything he removed appears to be benign PRAISE GOD! but that official pathology results weren't in just yet. I had barely any blood loss during surgery - he told Bob it equaled a tablespoon or less. I told Dr.H about how hungry I was and how I had no issues with the sips of the smoothie last night so he changed my orders so I could have a regular meal at dinner time. Once I heard that I started nibbling on the rest of the fruit Jessica left for me. Besides the two surgeons, I've been visited by two teams of residents assigned to my case. I forgot which team belonged to which division (plastics or gynecology) so one time that a team entered the room I asked them if they were here for the hooters or the hoo-ha. :)

Now that I've finally had a meal (first full meal in 48 hours), I can say that it's been a good experience - nurses are on top of everything around the clock. I also just received the pain meds and my eyes are heavy and about to close (actually I think I dozed off halfway through composing this haha) so it's time to wrap up this update and get onto the very important business of sleep. :)

Thank you for your prayers and positive thoughts! I am praising the Lord... for everything...including my crazy hair and surgical tape halter top! ;)

Before surgery:

After surgery:

Love,
Julie

Surgery around the corner. Farewell fertility.

2010-05-14T00:15:00.000-07:00

I'm excited and a little sad too. Excited to get this over with - the hysterectomy - and feel good knowing I'm preventing cancer of the ovaries/uterus/cervix by having said body parts removed and getting on with life. Sad that I'm saying a very final goodbye to my fertility and the possibility of ever giving Cooper a blood related sibling. Even if I wasn't having the surgery I would do everything in my power to avoid becoming pregnant again because of the fear that pregnancy hormones would ignite a deadly firestorm in my body. But it's still a really big deal to be saying goodbye to having the option of creating beautiful life.

Don't get me wrong about this - I want this surgery. But one thing I've learned over the years, and especially through this cancer journey, is that a person can want and need something and still have grief about it too. Feelings must be felt and processed for healthy resolution. So, tonight, I'm looking at Cooper and experiencing a flood of emotions as I prepare to say goodbye to my reproductive organs next Tuesday.

I'm so thankful to God for the timing of my pregnancy with Cooper. Had we not gotten pregnant and had Cooper when we did we would not have ever had him because of the cancer. Cooper is such an amazing and precious gift from God. I'm thankful that my body withstood the challenge that the pregnancy posed and that we were blessed with a healthy beautiful son in spite of the difficulty we had (incompetent cervix resulting from procedures years earlier to remove precancerous cells). God got us through it and gave us this amazing child.

I sometimes worry that we've done Cooper a disservice by not giving him a brother or sister but I know in my heart that we're protecting him with this decision by taking steps that we believe will help keep his mom here on earth for the many important years to come.

Tuesday morning I'll head down to UCLA for the surgery. I'm having a complete hysterectomy and also having one of my breast implants replaced (it's too large in light of the lymphedema swelling I have which is not likely to go away). The hysterectomy will be performed using the Davinci robot which is pretty cool since that makes it minimally invasive and greatly reduces the recovery time. In fact, the plan is for me to be back to work next month! I'll be spending the night in the hospital since it's still considered a major surgery.

My mom is flying in to help out again. I am so blessed to have such an amazing mom. We can't wait for her to arrive tonight. Cooper will have so much fun with her during her visit. Thank you, mom! I love you!

I appreciate your prayers and positive thoughts as we proceed with this next important step in this journey. We're praying for a successful surgery with no complications and with a quick and smooth recovery ahead. We're praying that Cooper won't struggle or be hurt when I'm unable to lift him in the couple of weeks after surgery. We're praying for clear/negative pathology results following the surgery. And we're praising God for the miracles He has performed for us already - every single day.

Today I walk...

2010-05-08T00:46:00.001-07:00

...in memory of the millions of women who lost their lives to breast, ovarian, endometrial, uterine, and cervical cancer.

...in honor of all those who are living with these diseases and fighting for their lives.

...in hope that our efforts will lead to treatment advances and a cure.

...in faith that God has a plan for each of us and that we can and do fulfill His purpose and make a difference in spite or because of the life challenges we face.

...in my first fundraiser since becoming a cancer survivor...nearly one year since being diagnosed with stage 3c triple negative breast cancer.

...with some of the most courageous and amazing warrior sisters - particularly my dear friends Tira and Jessica. I love you, ladies!

...in gratitude for the incredible, generous, and compassionate support I've received for this event and throughout this journey.

Thank you! God bless you!
Sent from my Verizon Wireless BlackBerry

Please sponsor me - EIF Revlon Run/Walk for Womens Cancers

2010-05-03T01:56:00.001-07:00

My first fundraising event as a cancer survivor is this Saturday, May 8th. Just 20 days before my one-year survivorship anniversary. I've posted my sponsorship request to Facebook and have already raised quite a bit and am very close to the automatic individual goal ($2000) set by our team (UCLA Fights Women's Cancers) - less than $200 to raise til I achieve it. But I'm an overachiever and this cause means a great deal to me so I'd like to raise as much as I can and I need your help.

More than 273,000 new cases of women’s cancers will be diagnosed this year in the United States. In 2009, breast, ovarian, uterine and other women’s cancers accounted for almost 70,000 deaths. One in eight women will develop breast cancer at some point in her life – that’s approximately 192,300 new cases of breast cancer diagnosed annually. And more than 21,500 will be diagnosed with ovarian cancer. Behind each of these statistics is the face of a woman like me who needs our help – a mother, a wife, an aunt, a sister, your friend. Let’s work together to fight and eradicate women’s cancers.

Please consider helping me achieve and exceed my fundraising goal. Money raised goes to cancer research, counseling, and outreach programs.

Please click here to donate today. Thank you so much!

Hope third time's the charm.

2010-05-03T00:23:00.000-07:00

Monday will be Cooper's first full day back to the daycare setting since my diagnosis last year. I'm excited and yet a teeny bit terrified - not because of the typical separation anxiety often experienced by a mother and child when bringing a child to daycare of school, but rather because of what happened the last time we were ready for him to go back just a year ago - just a few days before the shit really hit the fan (and the time before that).

I remember it so clearly, the excitement we felt about him finally returning to daycare as he approached his first birthday. We planned for it and were excited that we'd be spending a lot less money on child care with him at daycare. We were thrilled that Cooper would be returning to the same teacher that we felt so good about from the beginning when he first attended - when we first brought him there at just a few months old. The very first time we tried to enter him in the program we had to take him out and hire a nanny because his little preemie body couldn't handle the usual daycare illnesses. Every sniffle passed along to him turned into a full blown respiratory infection and every time he got sick he couldn't be at daycare (though it seems every other parent had no problem sending their sick and snot-spewing kids in against the rules) and we had to hire someone to help at home so that we could work but inevitably we'd catch it and Bob would be grounded from flying and one or both of us would end up not able to work from being sick. In just a few weeks of Cooper attending he was sick the majority of the time and his doctors felt it was best to keep him home. Cooper was high risk with a history of pneumonia and his pulmonologist was sure he'd contract RSV if he were in a daycare setting (and perhaps even if he wasn't). So we hired a nanny (and promptly went broke) and decided we'd try daycare again in the summer ('09) when he turned a year old and was stronger.

Cooper was back to daycare just a couple of days before I went in for my first mammogram last May (27th to be exact). We were transitioning him back slowly over a week or two - at daycare half the week and at home with the nanny the other half. I remember dropping him off and telling his teacher that the following day he'd be home with Esperanza (our nanny). Cooper and Esperanza came with me to the mammogram appointment (Bob was flying). They didn't come inside with me; instead she took him for a walk in his stroller around the hospital campus. I remember returning to them outside the medical building and being in complete shock that I had just had a biopsy performed because a suspicious mass was seen in the images. The next couple of weeks are sort of a blur except for a few specific moments here and there. I remember having a feeling that I'd be having extensive treatment and I'd have to rehire Esperanza full time and walking into the daycare center and informing his teacher that I had cancer and that Cooper wouldn't be staying (yet again) - this time because I couldn't be exposed to the usual daycare germs once my treatment started.

So, here we are, one year later. I've finished treatment. My counts are in the normal range again (low end, but still normal range) and it's time to try again. I'm excited. I'm nervous. I want this to be it. For this third time to be the charm, as they say. I don't want another setback. I won't allow it. I'm strong. Cooper is strong. We're broke from the cost of nannies and medical bills and being on disability and switching to an organic lifestyle. I need this return to day care to be successful and not tied to another health crisis for anyone in my house. We've let the nannies go. I've even given a glowing reference for Esperanza to work for another family here in town. She won't be available to come back. Last time she didn't have other opportunities awaiting her. So I'm counting on the reference request and phone call being a good sign for us - that it is going to be OK. I need it to be a good sign.

Friday I brought Cooper to the center for a visit to his new classroom. He'll be in that room for just a month or so before he will need to transition to the 2-yr old room. He had a ball during his one-hour visit. He didn't hesitate one bit and played well with the other kids. He barely noticed I was there, at least until I was telling him it was time to go home and then he was not happy with me. So, I know that he is cool with this. Even I am. I'm excited for him to have more social interaction, for him to be worn out at the end of every day, and for all the learning and arts he'll be exposed to there as well.

After dinner I prepared Cooper's lunch and snacks for tomorrow. We are as ready as we'll ever be. Now we just pray and give it to God. And we hope it is His will that this really is the right path and that we continue to be healthy and strong as we approach and pass the one year anniversary of my diagnosis.

Father God, Thank you for blessing my family. Every single day is a gift that we cherish together. We are grateful for and humbled by your mercy and love. Thank you for curing my body of disease. For giving me another chance to find you and be used by you to serve your purpose for my life. Thank you for blessing us with the most amazing family and friends who have helped us get through these past couple of very challenging years. Thank you for blessing me with a compassionate employer and with the resources needed to afford treatment and the costly lifestyle changes that give me a shot at beating the odds. Thank you for the brilliant and compassionate physicians, nurses, lab technicians and researchers whose hands you guide to help me and millions like me with effective treatment and care. Thank you for making Esperanza and Sarah available to help care for Cooper in our time of great need and for the open spot at the center so that Cooper can now return once again to the daycare center. Thank you for guiding me to such a wonderful place to worship you - NorthPark Community Church. Thank you for using me, Lord, to help others, and continuing to show me the way. Thank you, father, for filling my body and soul with your light and your love, boosting my immune system, and flushing the impurities and harmful cells away. Without you, Lord, I am nothing. Amen.

“Be joyful in hope, patient in affliction, faithful in prayer.” - Romans 12:12

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. " - Matthew 7:7-8

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." - Romans 8:28

Sabina the beautiful

2010-04-29T13:06:00.000-07:00

She rocked the surgery and kicked cancer's ass. We love you, Sabina!

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Quoted

2010-04-28T21:56:00.000-07:00

In the past couple of months I've been honored to be quoted by a couple of organizations in press material. It was kind of a thrill to learn that what I had to say was of interest to these groups. Most who know me know that I am barely ever at a loss for words, on any subject - and those who don't know me can just ask my husband how often I'm rendered speechless or on what topics I don't have an opinion and you'll probably just get laughter as a reply.

Most recently, I've been quoted on the UCLA Jonsson Comprehensive Cancer Center website. The center has a Facebook page where they asked how we challenge cancer and my response was used on their website. You can read it here.

I was also quoted in a press release by The Non-GMO Project when they reached
asked fans of the organization (on Facebook) why they were fans. My response to the question is among the small number of fan quotes that made the cut for the press release which you can read here.

I joked with Bob about me becoming famous and I expected him to make a crack about it going to my head or my 15 seconds being up but instead he said he wasn't surprised and that this is nothing compared to what he expects to see me doing in the years to come. I love him so much! :)

I pray frequently that God will use me as He sees fit. I'm ready to perform His will and pay it forward wherever I am needed. Whether it be a comment or something much bigger, like the book and website projects I intend to complete. I'm gearing up, listening carefully, and ready to fulfill His purpose for me, whatever it may be.

Prayer request for Sabina

2010-04-27T22:52:00.000-07:00

Friends and family,
A new friend of mine, Sabina, is about to undergo a bilateral mastectomy on Wednesday. Sabina and I met in March at our oncologist's office where she recognized me from pictures on my blog! She has been following the blog for some time now and she is in treatment for triple negative breast cancer. She finished her chemo and is now going in for surgery. Would you please include her in your prayers for a successful, complication-free, surgery and a quick and strong recovery with excellently clear pathology results? Thank you so much for your prayers and positive thoughts for Sabina.

Father God,
Thank you for bringing Sabina into my life. In Jesus' name, I ask you to fill Sabina's body, heart and mind with your light and your love, protecting her from harm and guiding the surgeons and nurses decisions and actions to perform your will while she is in surgery. Lord, please whisper in Sabina's ear to let her know you've got her back - you've got this. Help her to ease her mind of any anxiety and fear and find peace in the trust and knowledge that you are with her every step of the way, as you have been for me. Show her she is not alone and that she is surrounded by your love. Thank you, Lord, for your grace and mercy. Amen.

Warriors worry too

2010-04-17T14:08:00.001-07:00

Being a cancer survivor is a miracle gifted to me by God. Having a warrior attitude, being as positive as possible, changing my lifestyle to the point it's hard to believe that sour jelly beans were a staple of my diet and now I won't toch them - these are all God's gifts to me too.

But I'm human. Fallen. Susceptible to the attempts by the enemy to cause fear and doubt. And believe me when I tell you that the devil is determined. That bastard creeps into my mind once in a while to wreak havok. I hate him. But he will never win because my life belongs to God.

Over the past couple of weeks I have noticed a piercing pain in the back of my head, always in the same place. Not constant but occasional and lasts long enough to make me sit down and worry. Perhaps I had these pre-BC, I don't remember. But I've been told by the most brilliant docs around that I should pay attention to my body, jot down timing of unusual pain/discomfort, and report it if it persists.

Yesterday I woke up with a major headache. The kind that is typical for allergies or a cold. No worries there other than where did I put that Tylenol. Within a few hours that piercing in the back returned. I sat down and suddenly remembered how a few months prior to my diagnosis and and a couple of times since I've had episodes of seeing illuminated spots like an aura - like an aura migraine only minus the migraine. Crap!

So I cried. And I cried. I couldn't help but think that the whore (cancer) must have invaded my brain. It was Friday night and none of my docs would be in their offices. Besides, iwe are leaving Sunday on a road trip so that we don't waste Bob's unmoveable vacation dates. More about the trip later. Anyway, even if doc would order a CT it won't happen til we get back. I refuse to let unknown fears rule my life.

So I prayed. Father God, please wrap your love and light around my body. Saturate me with it, from the inside out. Please take my worries and fears away so that I can carry on performing your will and purpose for my life. Thank you, God, for protecting me and carrying me out of darkness. I am yours. In Jesus' name, Amen.

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New surgical plan: a smaller boob and nips delayed

2010-04-12T21:44:00.000-07:00

This afternoon I met with Dr.C (aka Dr.McHotty) to take a look at my post-radiation construction site (aka my boobs) and figure out what we are doing on May 18th, my next surgery date (besides the hysterectomy by Dr.H, of course). The original plan was that I'd be getting a couple little minor fixes to achieve better symmetry and have nipples created.

My left breast has been larger than the right since the original surgery last June. This is due to natural post-surgical swelling, but also lymphedema swelling that comes and goes. Now that I'm 3+ weeks post-radiation, we see that the implant on the radiated side did well. In fact, the excess skin/tissue at the bottom pre-radiation tightened up and lifted which is great as that would have been a "fix" for the next surgery but now wouldn't be necessary. However, at the top and side of the breast I am noticeably larger than the other side and it doesn't appear to be settling down. Since lymphedema is something I'll deal with for life, this swelling will always be an issue to some extent. He gave me three options. I can only remember two of them hahaha (thank you, lingering chemo brain!). One was to accept the lack of symmetry and proceed with the original plan to just clean up and get nipples. The other was to replace the left implant with a smaller one to achieve symmetry and do the nipples a couple months later.

I could hear Bob's voice in my mind asking things like "can she still get it all done in the current plan year (which ends June 30th)?" and "will the smaller implant look smaller than the other side when the swelling is calm?" and "can we still do the hysterectomy and breast surgery the same day even though we're now exposing the implant?".

I forgot to ask the first question, but I can call tomorrow to find out how much time must pass between the implant swap and the nipple surgery. I didn't bother asking the second question because I feel that he wouldn't suggest it as an option for correcting symmetry issues if he thought it would just create a new case of asymmetry. The third question was my main concern as the hysterectomy is my first priority right now - I want it done before my cycle returns, and I read something in my chart last week that made this more important than everything else (more on that later).

Dr.C explained that normally they won't do hysterectomy or other OB/Gyn surgery at the same time as implant surgery because the OB/Gyn surgery is generally considered "dirty" in terms of infection risk. However, since they're doing it with the DaVinci robot and that part of my surgery will be performed last, after the breast surgery is done and closed up, he is comfortable proceeding.

So the new plan for May 18th is to replace the left implant and proceed with the hysterectomy. Nipples will be done after I'm healed and the port will come out when the nipples are done so that I can use it for the next Zometa treatment if I get it before the nipples are done.

I'm happy with this plan even though that means I won't have the nipples as soon as I had hoped. But I know that the smaller implant will feel better and less alien and uncomfortable when I have swelling since it won't feel like it's under my chin and in my armpit and I'll be less self conscious about being lopsided (since I won't be anymore) and will not have to hide it with layers of under garments like I do now - this is a big deal as summer approaches since most of our summer involves triple digit heat around here.

So that's the plan!

Dear Lord, thank you for blessing me with such brilliant and compassionate physicians!

Malachi 4:2 But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall.

Infused, felt up, thumbs up! Long update

2010-04-06T20:38:00.000-07:00

This morning I went in for my first Zometa infusion. It went smoothly and was much quicker than chemo infusions were - just 30 minutes. ;) However, anyone that knows me knows that I can't go to the cancer center without finding sister warriors to chat it up with and of course catching up with all my favorite nurses. I updated Dr. Barstis on the Zometa coverage (that it's covered by my prescription benefit plan) and he was thrilled. I also mentioned that one of my friends back east got hers covered based on getting a bone density test that revealed her as having osteopenia (precursor to osteoporosis) which is pretty common for post-menopausal women (which I now am - have been menopausal since chemo began in July and will be from here forward since the ovaries are coming out next month). I swear that I saw him mentally kicking himself as the words came out of my mouth and he immediately agreed we should get me in for the bone density test since I very well could have that situation and then the administration of the Zometa would be covered as well. So tomorrow I call the imaging center to see if I can get in asap to have that quick test done. Thank you, Anne, for sharing that very helpful information with me this morning :)

One of my favorite sister warriors was there - a beautiful woman named Theresa - with her hubby who has been there every time I've seen her there. I'm so thankful to God that He has blessed Theresa with such a supportive and loving husband. I always enjoy talking to them both when we are there at the same time. Today I gave Theresa one of the pink bracelets that my awesome friends Nicole and Diana had customized with my blog address on it - my sneaky and amazing friends were selling the bracelets in the early days of my diagnosis to help raise money for my out of pocket medical expenses (thank you, ladies - I love you so much!). During a recent road trip and visit to see Diana and her family in Arizona Diana gave me a big stash of the bracelets to take home with me so I put a few in my goody gift bag that I bring to every doctor appointment. Why am I jabbering on about this?...well I was thrilled to get a blog comment from Theresa just now since she saw the blog address and came to check it out. We've chatted during our visits to the cancer center but had never exchanged contact info and now she knows how to find me and she has a great blog too that I can now follow. I thank God every day for blessing me with the many gifts He has given me including allowing me to meet so many wonderful people on this crazy journey. Theresa is battling a recurrence of triple negative breast cancer. Please keep her and her family in your prayers.

I asked Dr. Barstis to examine me to feel for anything in my nodes under my arms, across my chest and in my neck. Most times that I'm there he pulls up a stool next to the chemo/infusion chair to chat with me and I hardly ever was examined during my 6 months of chemo but my sister warriors who were being treated elsewhere were being examined at every single chemo infusion. I was only getting checked if I expressed a concern or mentioned a funny feeling. I was put in a private room and Dr.Barstis checked my neck, shoulders, my armpits, my sides and the top of my back and said he didn't feel anything abnormal. Sigh of relief there because I was telling him how I sometimes feel little pea sized bumps on my chest and it just freaks me out. He told me that I should just call and come in to be seen any time I feel something that worries me rather than wait til a scheduled appointment. I assured him I wouldn't wait it out if I wasn't going to be seen within a couple of days but he said I shouldn't have to even wait that long and worry myself sick. I agree. ;) Before leaving I asked how often I'll be scanned (PET/CT) and he said every six months the first year and then annually after that for the first 5 years. He told me that with triple negative the recurrence risk is high the first 3-5 years but that if I can just get past the 3 and 5 year marks without a recurrence I'm golden. My next PET/CT scan will be in August since I had one in February.

After my visit at the local UCLA cancer center I headed down to the main UCLA campus in Westwood for my follow up visit with my surgical oncologist, Dr.Chang, who is the Director of the UCLA Revlon Breast Center. It's standard to have a 3-month and/or 6-month follow up with the surgeon but I hadn't been back since my 2-week follow up back in the summer. I saw the nurse practitioner first and she gave me a good feel up too - cool, twice in one day haha! I told her what I told Dr.B about feeling the little pea sized bumps and feeling panicked and how I've had to force myself to keep my hands off my body at night time since I end up laying in bed unable to sleep and not able to schedule a check-up since all the doc offices are closed at 2 am haha. She told me about their proactive follow up program and suggested I enroll. I would be checked by them every 3 months with a physical exam and get checked up on by the psychologists whom I know through the support group program and the physical therapist (for lymphedema) who I have also met and who works with the specialist I've been seeing. She said any time I have a concern or worry about something I feel I just call or show up and someone will examine me and act as needed. I enrolled and booked my first/next follow up appointment for 3 months from now. I saw Dr.Chang and she examined me too - that's 3 times in one day - woohoo! LOL ;) She reiterated what Dr.Barstis told me about the triple negative recurrence risk in the first few years. She said at 3 years without a recurrence my risk goes down by 80%! At 5 years it's another huge step down. She said that TNBC (triple negative breast cancer) mostly disappears not to rear it's ugly head again if you can get past that magic 5 year mark without a recurrence. Cool. I told her what I've been doing to reduce my risk - the lifestyle changes - avoiding chemicals/toxins, boosting immunity with major diet changes and the supplements that Dr.Hardy recommended, exercise and managing stress with meditation and relying upon my support network and my faith. I know this doesn't mean it can't happen - I know a number of women personally who currently are battling recurrences in spite of doing all they knew to do to minimize their risk too. There's no guarantees. But if I can confidently say that I'm doing everything we know of that may help then I won't have any regrets (or not many anyway haha).

My big challenge at the moment is improving my sleep at night. Cooper had a great week of sleeping through the night last week but it has unraveled and he's up several times a night again. Ugh. I'm not sure why but it *might* be a return of (or new strain of) the stomach bug we all had because everyone we visited with in Arizona has since been sick with some strain of the bug and of course Cooper threw up on the way home from that trip and then again the other night so that might be it. I hope and pray that he returns to the good sleep pattern I had a glimpse of because I felt great when I was getting 5-6 consecutive hours of uninterrupted sleep. Now it's more like 2 hours at a time separated by Cooper screaming and making demands requiring intervention. ;/

I'm also trying to incorporate guided visualization meditation into my daily routine because I haven't been doing it often enough - have just been doing it when I am panicked or worried. And the exercise is progressing with longer and more challenging walks on a more frequent basis but I need to push myself harder to ensure I get my heart rate up for a full 30 minutes or more and do it 6 times a week instead of 3-4 times that I'm doing right now.

One more bit of news to report. On my way home from UCLA this afternoon I got the call from the OB/GYN surgeon to confirm my next surgery date. I WILL be getting nipples and having a complete hysterectomy (removal of uterus, cervix and ovaries) on May 18th! I will also have them take my port out.

I considered keeping the port for the Zometa infusions but since those infusions are just 30 minutes long and only every 3 months, I think I'll have it taken out so I can feel more "normal" again and can compare the feeling on one side of my chest with the other (when I check myself out it helps to compare both sides so that if they feel different there's more reason to question and raise a flag but if they're the same then that means less reason to be concerned but I can't do that on the level three nodes that are on the chest front because the port is in the way).

I also feel that saying goodbye to the port is important to my psyche not just to feel more normal again but to say that I'm done and won't need it anymore. I don't want to keep it "just in case". Sure, having it would make Zometa infusions easier and less painful (though I plan to still avoid the pain by using numbing cream on my arm when we switch to that infusion location) - but I want the universe to hear me loud and clear that I am done with cancer and don't need this port for treatment anymore. Besides, Blue Cross better be grateful that I'll be saving them so much money by combining three surgeries into one - that's right, nipples, hysterectomy and port removal - each usually gets it's own surgery but I'm doing it all at once, lowering costs and reducing my exposure to anaesthesia. Oh yeah, I'm a warrior! LOL :)

Big day! No wonder I'm pooped! Off to bed for me! But not before giving thanks and credit where it's due.

Thank you, Lord, for this and every day. Thank you for the countless blessings you have bestowed upon me and my family. Thank you for the amazing care and support that I receive every day. Thank you for my incredible family, friends and everyone that you bring into my life. Thank you for revealing yourself to me. Use me, Father, to perform your will and purpose for my life. I am here, at your feet, with empty cups to be filled. Thank you, God, for loving me.

Love,
Julie

PS - Dear cancer, I'm done with you. Goodbye.

I'm quoted in a press release...

2010-04-05T22:35:00.000-07:00

...here it is...

http://www.nongmoproject.org/2010/04/05/non-gmo-project-facebook-fanbase-surpasses-10000-members/

If you'd like to learn more about the importance of Non-GMO please read the Non-GMO Project website at www.nongmoproject.org. Our food supply is currently in danger and we need to get educated and demand better for the current and future generations.

And next comes Zometa...

2010-04-05T21:05:00.000-07:00

I start Zometa treatment in the morning. It's a biphosphonate drug to strengthen the bones. It's been used for people with osteoperosis and breast cancer that has spread to the bones. Neither of those uses applies to me though, thank you God! However, recent studies have shown promise for the drug to help avoid cancer spread to the bones and since I was triple negative and thus don't qualify for any of the great advances that my Estrogen+ and HER2+ sister warriors are benefitting from, my docs and I have decided we'll use whatever we can to give me any possible advantage. The side effects are considered rare and mostly minimal so we feel the benefit outweighs the possibility of the potential side effects. There is one major nasty side effect possible - it's called osteonecrosis of the jaw (basically means death of bone tissue). I am not in any of the known risk groups for this condition but that doesn't mean it can't or won't happen. I am determined for it not to happen and one way I can help prevent it is to keep my teeth and gums as healthy and infection-free as possible. I will have to avoid major dental work while on this medication and possibly for a few years afterward since the drug has a very long half life.

This is an expensive medication that most insurance companies refuse to cover and mine being no exception. We were about to pay for it out of pocket at the tune of $1300 per dose with doc prescribing me to receive it every 3 months for 2 years (IV administration). However, another miracle occurred and we found out that my prescription coverage company covers it and my portion is $40 per dose! Thank you, God!

So, my prayer request is for God to protect my body from rogue cancer cells that may have survived all my treatments and to protect my bones and jaw from the negative side effects of Zometa. I have a lot of plans to accomplish while I'm still here and I hope and pray that God's plan for me is to carry out those plans in my earthly form. I know that it's not up to me and only He knows his plan for me so I ask Him often to reveal it to me so that I can perform His will and give this life the most meaning possible while I'm in it.

In addition to starting Zometa tomorrow I also will go to UCLA to have a follow-up meeting with the surgical oncologist that surgically removed the cancer from my breast and lymph nodes last June. I plan to have both her and my oncologist (in the AM) feel me up pretty good because I often feel little bumps in my chest below the clavicle area that freak me out. It's amazing how I used to be reluctant to disrobe at doctors' offices in years past and now I'm quickly getting topless and asking the doctors to feel around and make sure things feel normal. That's just part of the new normal I guess. *sigh*

I have a friend who just had a bilateral mastectomy after a MRI revealed some lesions that they weren't able to safely biopsy the normal way. She tested positive for the BRCA gene mutation and decided that she would go ahead with the mastectomy regardless of whether it turns out to be cancerous or not. She had her surgery last week and is now anxiously awaiting the pathology results to determine if she can be considered done now or if any treatment will be necessary. I'm praying that she is done with the craziness now and I hope you'll join me in praying for her too. I also pray that her recovery is quick and free of any complications.

I'm still waiting for word on my surgery date - I keep harassing the two surgeons' offices because my husband needs to bid his May schedule and we need to know when this is going to happen so he can request time off at the time of the surgery since I'll be spending the night at the hospital and my mom needs to know when to arrange to fly out to help me out the first week after surgery. I also need to figure it out so I can effectively plan my exact date for returning to work. Unfortunately I think they're ignoring the phone when my number appears haha. Don't they know who they're dealing with!? hahaha :)

Wishing you blessings of good health, love, and God's favor, always.

Love,
Julie

Happy Easter!

2010-04-04T22:42:00.001-07:00

...from our family to yours

Full house

2010-04-01T14:04:00.000-07:00

Three triple negative, two HER2 positive warrior sisters - all 30-somethings.

Sent from my Verizon Wireless BlackBerry

Girlie parts update

2010-03-30T15:12:00.000-07:00

As a cancer survivor, my new life centers around three things: 1) God, 2) Living life to the fullest, and 3) Making lifestyle changes and decisions that will hopefully give me the best possible chance of staying cancer-free.

Now that the major treatments are done and I'm in remission, the third item on the above list involves getting into a routine of healthy habits as well as seeking out medically available and appropriate choices based on current studies and my medical history.

Last week I consulted with two OB/GYN physicians to determine the appropriateness of hysterectomy surgery and what it would entail. The reasons I've been considering this surgery are as follows. In my twenties I experienced years of abnormal pap smear tests that resulted in numerous procedures to remove precancerous cells. Now that I'm a cancer survivor I do not wish to retain a cervix with a proclivity toward developing cancer. And since ovarian cancer is most often found when advanced I do not wish to allow that to happen given that triple negative breast cancer is often correlated with gene mutations relating to breast and ovarian cancer. Even though I was negative on the preliminary BRCAI/II test, I chose not to have the extended testing which could have revealed a genetic mutation (I know of at least one woman personally that was negative on the initial test but positive on the extended test). I also don't need the hormones pumping through my body. Even though I had triple negative cancer (non hormone receptive) I'm not convinced that hormones didn't play a role in the cancer I had, particularly since I was injected with hormones for 15 weeks during my pregnancy a year prior to my diagnosis. Besides, I'm not going to carry anymore babies in this body - sad but true - so I don't need my ovaries, uturus or cervix anymore. They're being evicted.

When I asked the two OB/Gyn docs and also my two medical oncologists why I would/should keep the girlie parts the only answer I got was relating to putting off menopause because of the unpleasant symptoms that it brings (flashbacks, for instance). I just laughed because I've had those since July when I started chemo and I know that's temporary - should last just another year or so at most and frankly I just don't care about that because it's not as bothersome as it was in the beginning. I asked them if having the surgery puts me at greater risk for disease and when the answer was 'no' I could only respond with "let's get er done!" Both Dr.N and Dr.H (the OB/Gyn docs I consulted) liked my logic and agreed it makes sense.

Now on to the timing issue. As soon as possible is my answer and here is why - first, I want/need it done before my menstrual cycle has a chance to return, and secondly, I want/need it done at a time that creates the least amount of disruption to my life and those that count on me (family, work, etc.) since it entails a couple weeks of recovery time. I also want to incur the least amount of out of pocket expenses so that means before the end of the current benefit plan year (which ends June 30) since I've already met my out of pocket maximum for the year. I have no doubt that I'll be paying out the maximum next year as well for all the follow up tests and appointments and things I'll have over the next few years but I'd rather not have to put out $2k for a single day of care if it can be avoided.

I also have another breast surgery that needs to get done this spring - I need nipples! So I had a brilliant idea - let's trade in the uterus, ovaries and cervix (and probably my port-a-cath too) for a set of nipples on the same day ;). Not only would it reduce the number of times I have to go under general anaesthesia, but it would lower the costs too. Basically I'm looking to combine three surgeries into one - what insurance company wouldn't love that!? Sure, that involves coordinating a couple of surgeons but we all know I don't take 'no' for an answer. So that's the current mission. I've been on the phone back and forth between Dr.H and Dr.C's offices to help keep the ball moving to get a surgery date coordinated with them both. I don't have a set date yet but it will be in May (no later) because Dr.H (the UCLA OB/Gyn I've selected to do it) is out of town the entire month of April. I love Dr.N (the OB/Gyn that delivered Cooper) but he doesn't have privileges at UCLA so I wouldn't be able to combine surgeries if he did my hysterectomy surgery, so that's why I've chosen Dr.H.

During my visit with Dr.H he did an ultrasound of my ovaries. They are "as quiet as can be" and he said there are no egg follicles whatsoever. The lining of my uterus was so thin that he said he'd be surprised if there was a trace of estrogen anywhere in my body which means my body doesn't appear to be attempting to get my cycle/fertility back and that's a good thing (for me, anyway). He said that my uterus and other girlie parts in that region are surprisingly small for someone that has had a baby and when I told him that Cooper was born at 35 weeks he was not surprised - said he couldn't have grown much beyond that in such small quarters. Dr.H also said very complimentary things about Dr.N - said he has an excellent reputation. I told him I only let doctors treat me if they have an excellent reputation. He smiled.

There are several ways a hysterectomy can be performed. I'll be getting completely laparoscopic surgery with the da Vinci robot. This will make recovery much shorter and will reduce the risk of adjacent structures from being negative affected given the size of my parts. Neat stuff.

So that's the latest on the girlie parts. Once I have a date set I'll update everyone that needs to know first (family and work) and then I'll update here.

The New Anticancer Rules: Rules to Live By!

2010-03-30T11:51:00.000-07:00

The New Anticancer Rules

Building a strong immune system and destroying dangerous cancer cells is easier than you think. Check out The New Anticancer Rules from the book Anticancer: A New Way of Life on the author's website. Pass it on!

DONE! Wow!

2010-03-19T11:21:00.000-07:00

This morning was my 33rd and final radiation treatment!

When I arrived for my final treatment this morning I was surprised by my great friend, Jessica, and her beautiful daughter, Juliette. They drove all the way up from the beach to support me on this important and special day. Jessica brought me a pink boa and a tiara to wear in celebration.

She also brought me a pretty butterfly balloon, a gorgeous flower plant, and a beautiful crystal to help me make rainbows every day (because on the night before my last chemo there was a rainstorm and a HUGE rainbow here in town which I took as my sign that God was speaking to me and telling me everything is going to be OK). There was also the most touching card which I read when I got home and it made me cry like a baby. Thank you, Jessica!

I think I might have to wear the boa and tiara everywhere I go today. :)

So it's official - all of my major cancer treatments are completed! Bilateral mastectomy - done (6/12/09). Chemo - done (7/14-12/15, 2009). Clear PET/CT scan - got it (2/1/10)! Radiation - done (2/3-3/19, 2010). Everything I do now is the icing on my treatment "cake" - finishing up reconstruction, get a hysterectomy, and get zometa to protect my bones. Life is amazing. God is my hero.

I have the most amazing caregivers, family, friends and blog followers too :). Thank you all so very much for cheering me on, cheering me up, praying for me, and everything else you've done for me through this incredible journey. It has been such a wild ride.

It's hard to believe that the big stuff is done but I'm thrilled that it is. It's exciting and scary too but I'm going to dwell on the exciting. I have big plans for paying forward all the love and support and wisdom that I've been blessed with. I hope you'll stay tuned in while I continue to take steps to protect my body and share my learnings and musings with everyone. In fact, I'm going to need your input on some of the exciting projects I'll be working on to help raise awareness and help others get through their breast cancer journeys. So, please, stick around and see what I'll be up to because you're an important part of this journey too.

Always remember to live, laugh, love, and continuously learn. Follow your dreams and your heart. Honor yourself and your loved ones. Recognize the divine source that makes it all possible and celebrate, celebrate, celebrate life.

Radiation treatment almost done!

2010-03-17T23:04:00.000-07:00

It's hard to believe that I'm just two days away from being done with radiation treatment. Going in every weekday for treatment hasn't been convenient but I've been so blessed with the most amazing team there, not to mention the incredible technology (TomoTherapy). Dr.Z, Nurse Grace, Therapists MaryBeth, Kit, and Joe, and the office team led by Lorraine are all so awesome - so friendly and compassionate. Besides, they appreciate my silly humor and the fun and quirky little gifts I leave for them most days.

During the last week of regular radiation treatments I developed some painful red burns which I've been nursing with cool compresses and lots and lots of goo. The areas that are most painful are the crease underneath the breast and a large patch on the far left side of the breast under the arm. My skin feels rough/chaffed and stings like a bad sunburn. It also aches beneath the skin sometimes. I'm incredibly tired. My left/treated breast is swollen, making me larger on that side temporarily. Swelling is no stranger to me given that I now have lymphedema of the left arm. Thankfully, my arm swelling has come down quite a bit, but not completely. I'm sporting the compression sleeve all the time now which is not fun but I always remember that things could be much worse and I'm truly blessed to have gotten through this. So incredibly blessed. So incredibly grateful.

This current and final week consists of the "boost" treatments - five of them - which are treatments focused on my scar site because apparently that is where recurrences tend to develop. These boost treatments are shorter than all the previous treatments which is a nice bonus. Instead of being under the beams for 7 minutes, I'm under for just 4 minutes during this final week. I've had three of the boost treatments so far and my final two are over the next two days. By mid-morning Friday I will be all done with radiation treatment, and with that being done I'll be done with all my major cancer treatment! I praise God for these miracles!

After radiation is completed I will move on to have the remaining reconstructive surgeries as well as a hysterectomy and Zometa treatment. Sounds like a lot still to be done and I suppose to most that does seem like a lot but compared to what I've already been through I don't see them as very big things - more like finishing touches. I'm working with all the doctors and surgeons to figure out the best timing and whether we can combine surgeries to limit the number of times I go under and the ultimate amount of time spent preparing and recovering. We'll see if they cooperate with me ;).

I was recognized by a blog follower today :)

2010-03-17T21:54:00.000-07:00

While visiting my friend Jessica during her final chemo infusion I was approached by a patient in the waiting room who asked me if my name was Julie. When I said yes she asked if I was Julie Olsen with the blog! When I confirmed that I was she told me she follows the blog and recognized me from the pictures I've posted recently. This beautiful young lady was recently diagnosed with triple negative breast cancer and has the same team of doctors that I have and she was there for chemo today. A few minutes later we were all in the infusion room, cheering Jessica on for her final chemo and hearing about this other young lady's story. We exchanged contact information and we're looking forward to including her for our next BC warrior sister luncheon in the next week or two. I want to respect her privacy so I won't say her name until she gives me permission to do so. So, my new friend - please let me know if it's OK with you if I mention your first name or if you'd rather remain anonymous. :) We're thrilled to have met you and look forward to cheering you on as you proceed through your treatment journey. You are in my prayers.

Praise God for the countless miracles in every day.

BC warrior sisters lunch - hair update

2010-03-16T15:50:00.000-07:00

The three stages of warrior sister hair updated. :)

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Little gifts leave lasting impressions

2010-03-10T11:46:00.001-08:00

This morning at the radiation oncologist's office I ran into a gal that I used to see at the chemo center. We were both waiting for our turn with Esther when she recognized me and asked me if I was the one that gave her some mini cookie cutters during the holidays. Yup, that was me. I bring little gifts with me to nearly all of my appointments and I pass them out to patients and staff. I don't always have enough for everyone so on those days I try to give them to people who seem to need a pick me up. The cookie cutters were cute - real little ones with different holiday shapes and I tied a cute little holiday ribbon on them.

Anyway, she told me that not long ago she was having a really stressful and tough day and her eight year old son grabbed the cookie cutters and brought them to her and suggested that they make cookies together to "feel better". She said they are the only cookie cutters they have and that they helped turn a horrible day into a fun and happy day for both her and her son. She said she remembered thinking about how I would have been really happy too knowing they had brought them joy. She was right. Hearing her tell me this today filled my heart with joy. It also reaffirmed for me why I give these gifts away - these silly little inexpensive gifts. Because even if they make someone smile for just a moment, they've served their purpose. But sometimes, like in this one case, they make an even bigger mark in someone's day - including my own.

So it wasn't the radiation after all

2010-03-10T10:49:00.000-08:00

Cooper and Bob have both since come down with all the lovely (not) intestinal symptoms I have been reporting - nausea and the other craziness - so we now know it wasn't the radiation causing it. We've all come down with the nasty stomach flu that's been sweeping the country. I STILL have it - it's been over three weeks for me now. Cooper came down with it a week ago and he's MUCH better now. Bob came down with it earlier this week and came home early from work because of it.

I also had a head cold last week on top of the stomach flu. Frankly, between those two illnesses and the radiation fatigue I don't know how I managed to even function the past couple of weeks. Oh wait, I know - yet another miracle of God's doing. That's the only explanation I can come up with and I'm sticking with it.

Dr.Z told me yesterday that if my stomach flu symptoms aren't better by the end of the week I will need to see a GI specialist to make sure everything is OK. Lovely. He recommended I get back on probiotics and Immodium to help things along. Check.

On the plus side, I've dropped an extra ten pounds from the stomach flu. I'm down 21 pounds since mid-December - isn't that insane!? I now weigh about 5 lbs less than I did on my wedding day. I had to diet and exercise for something like 6 months to lose that amount of weight by the wedding and here I am not making any deliberate changes whatsoever since finishing chemo in December and dropping that weight in less than 12 weeks. Crazy! Well, as soon as my digestive track is normal I'm sure I'll put most of that weight back on when I'm able to eat normally again. In fact, I think I'll get started on that today at lunch because I'm meeting a couple of girlfriends at an organic burger place I just found out about down in West Hollywood. I plan to eat whatever I want (since they're 100% organic there) and I don't care if that means spending the following 10 hours in the bathroom haha.

So a recalibrated list of radiation side effects includes: 1) Lymphedema, 2) fatigue, and 3) burns - very minor thus far. Dr. Z looked at my skin yesterday and said I'm doing far better than most at this point in treatment. I've completed 26 treatments and have 7 more to go.

I praise God for the numerous miracles in my life every single day.

Radiation side effects: the sequel

2010-03-02T23:38:00.000-08:00

19 treatments down, 14 to go. In just the last few days I've begun experiencing a couple of new side effects - one expected, one not. The one I expected is increased pink/red color of the radiated skin. Thankfully it's coming on gradually but it is much more noticeable now and slightly uncomfortable - mainly the strip of skin just below the breast is where it's become sensitive. Dr.Z looked at it today and said that my skin is actually doing better than most do at this stage so that's great. Hopefully that will continue to be the case.

The effect I was not expecting is nausea. Certainly not the level that I had with a couple of the final chemo cycles. The other digestive issues I was having earlier (which have since quieted thankfully) was bad enough. For the last three days I've been unable to consume much more than toast, crackers, fruit and hot tea. Of course, the chemo brain I'm sporting these days has led me to completely forget that I have plenty of anti-nausea pills in my medicine cabinet that I could have been using - I didn't even think of it til just now while composing this blog post.

Anyway, I've been so hungry so I go into the kitchen to make a meal and find not much I can make that won't make me want to hurl. Even when I find something that I think I can handle I prepare it and then stare at it, push it aside, and then drop another piece of bread in the toaster while I boil water for tea. The thought, sight and smell of vegetables and meat makes me want to vomit. Bob has been a ginger ale pusher for a couple days and while I loathe the idea of consuming the sugar, I have found taking several sips at night time has helped calm my belly just enough to be able to ignore it for a bit. I sure am glad he is home right now while this is happening because when a wave of it hits me it forces me to sit down and clear my mind of food related thoughts, odors and images and the last two days it's hit me when I was about to prepare food for Cooper and had to have Bob take over.

In the plus column, I've lost 5 lbs since last week and am now below my wedding day weight. haha! I'm sure once I start taking those anti-nausea pills tomorrow I'll get those 5 lbs right back. Fine by me. I need to get back to my warrior diet packed with veggies asap.

I mentioned the nausea to Dr.Z today and he isn't convinced it's from the radiation but he wouldn't rule it out either since it's a known side effect of the treatment. He said that usually when someone has radiation nausea it starts from the beginning. I told him I'm not "usual" :) in any way. He agreed (because I've been charming him and the rest of the staff from day one with my fun and silly gifts and fantabulous sense of humor haha).

Another plus column item is that the physical therapy and lymph drainage massage is working on my arm. Most of the arm has returned to normal - just a small section above and below the elbow is still swollen but has also come down. My therapist, Richelle, felt that the progress is sufficient to allow me to stop wearing the stiff padded compression garment around the clock - woohoo! I have to wear it at night but during the day I can swap it for the class 2 compression sleeve and guantlet. Richelle is fantastic, by the way (if you know anyone in southern CA that needs a great lymphedema specialist/therapist contact me and I'll send you her info). She is extremely knowledgeable, professional and personable and is sought out by physicians and patients from all over. We chat through every treatment session and have come up with a couple of ideas on how to increase awareness and education of the risks of lymphedema in breast cancer patients which is needed because most of the surgeons and oncologists don't educate patients about it enough to help them properly avoid it and/or recognize the early signs of it developing.

I'm incredibly blessed and grateful for all the wonderful caregivers and tools in my cancer ass kicking posse and the friendship and support of so many. They all make such a difference in my life (and so many others') each and every day. Thank you, God, for these amazing blessings.

Glowing - no, exhausted - yes: Radiation side effects

2010-02-25T11:49:00.001-08:00

Today I had radiation treatment #18 (out of 33). I started seeing some side effects last week. First, the skin is a very light shade of pink - not too bad - and it is starting to feel a little tight. It doesn't bother me throughout the day but when I lay on the radiation machine "couch" and put my arms above my head I feel it then and the position is just not as comfortable and tolerable as it was previously. Not terrible though and that should gradually worsen as I get further along.

The radiation induced exhaustion hit me this past weekend, like a brick wall. I am so glad Bob was home when it did because he was able to take charge of Cooper for me whenever I needed to lay down and he let me sleep in and get naps in each day which I really needed and appreciated. It's a different kind of exhaustion than the chemo fatigue, but equally annoying.

Another lovely (NOT) side effect that started around the same time as the others I just mentioned is in the digestive department. I'm not going into details but it's not uncommon for adjacent areas of the body (such as the stomach) to be effected by the radiation beams. Even with tomotherapy which is more precise and targeted, there can be "scatter" radiation to parts close by. Dr.Z said some people get nausea, others get what I have gotten, while yet others get both or none. Yeahhhh...not liking it. I was (still am) hoping that it's a stomach bug and not the radiation because I can't imagine this continuing for the rest of the treatment duration and/or longer - not fun. Bob handed me an over the counter remedy which I started taking last night so hopefully it will help. Ah the joys! ;/

My arm is doing well and seems to be responding to the compression and drainage therapy I'm doing. I'm super sick of wearing this thick compression gadget on my arm and hand though and last night I swapped it out for the firm compression sleeve and glove that is used for maintenance because it was driving me crazy. I need to put the other thing back on but I have to wash and dry some of the parts first. The items that make up the contraption are pricey so I only have one to work with and I end up wearing it for 3-4 days and then need to wash them but they take forever to dry (can't go in the dryer) which is great in that it feels great to not have it on but it's not great in that it's time I'm not compressing the arm as much as it needs to be while I wait for the wash and dry to finish. Eventually I need to buy a 2nd and 3rd set of some of the pieces but right now I just don't want to part with the money. My PT'ist/Lymphedema specialist says that the arm is looking much better and responding well to treatment so I'm quite happy and relieved about that.

Love and blessings to everyone,

Julie

Hair: 10 weeks post-chemo

2010-02-24T20:36:00.000-08:00

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Hanging up the cape - for now...

2010-02-22T14:19:00.000-08:00

...the Super Woman cape, that is.

Lymphedema, on it's own, isn't a show stopper. But when I add it (the 3x/week PT and 2x/day home therapy involved) to daily radiation, work, church, family/toddler care and of course necessary healthcare/lifestyle changes, etc., with Bob away so much of the time, things (I) began to unravel last week.

I was certain I could do it all - kick cancer's butt, be employee and mom of the year (ok, not exactly), and so much more. Once that arm swelled up and the radiation fatigue set in, the game changed. The drive, the desire, it's there. The endurance, the energy, the physical ability, the sharp brain power - not so much. No matter how much I try to ignore it, I have to admit that I'm impaired right now.

After several days of agonizing over it, we've concluded as a family that I've been trying to do too much, too soon. I'm not even done with treatment. It would not surprise me if the lymphedema was a sign from above that I needed to cut the crap and acknowledge that I wasn't taking proper care of my health needs when that should be the #1 priority - that I was jumping in too soon in my quest to achieve "normal" status again. I'm listening. I'm grateful. I'm hanging up the cape for eight weeks as I step out of work and focus solely on my health and finishing treatment. I'm so incredibly blessed and grateful that my colleagues and management team at work are fully supportive of this decision. What a blessing! Praise God for answered prayers and the most amazing support network a person could ever hope and pray for. Thank you!

For the next eight weeks my full time job will once again be to finish (radiation) treatment, to establish a wellness routine that resumes my warrior nutrition and supplementation, physical therapy and exercise as my body permits, rest and more rest in between my many appointments, deal with the mountain of paperwork (medical bills, disability forms, etc.), and more rest. Because, I don't want to, and can't afford to, blow past this critical time to get it right.

Love,

Julie

Acute lymphedema. Bandaging. sigh

2010-02-14T09:14:00.001-08:00

In the scheme of things, what's one more little bump in the road, right? I had my first PT session yesterday with a lymphedema specialist. Richelle is awesome - she really knows her stuff and is very kind and compassionate too. She is treating me at her home office so that I won't have to travel all the way down to Westwood several times per week which is where most of her patients go for treatment - this is saving me 25 miles in L.A. traffic (each way). She has a great setup in her home and I don't have to battle an overcrowded parking lot or parking garage like I do for all my other doctors and support group visits.

Upon measurement and evaluation, Richelle seemed to think that my swelling may have started a long time ago but gone unnoticed because it's not severe and most people can't actually see it when they look at me - mainly because the worst part is in my upper arm and in my side where I'm usually covered up given it's winter time. Even when I took my shirt off for her to see more closely she said it wasn't very noticeable to the eye but when she measured my arms to compare them it was nearly an inch difference between them. Since my left arm is the affected arm and I'm right-handed, this difference is actually considerable. Usually the arm we use the most is bigger than the other - in my case my right arm is smaller than the left, in spite of being right-handed. My skin/tissue in the left arm is not "pitting" the way it would in the earliest stages of developing lymphedema and that's not a good thing because that indicates that it has been swollen long enough to make it less reversible.

Richelle gave me a crash course on the lymphatic system. At times I wanted to stick my fingers in my ears and yell "lalalala" because even though I've been stuck, poked, prodded, and had my share of icky procedures I just was queasy at the thought of all that lymph fluid routing around, then becoming stagnant in my arm (putting me at risk for infection), and the occasional icky cancer related thought that creeped into mind while she described the placement, function and direction of lymph nodes, fluid, etc.

So here's the program. For two weeks, beginning Tuesday, my left arm will be bandaged from just below my armpit dow to the knuckles on my hand, using compression bandaging. I will wear it 24/7 between physical therapy appointments at which Richelle will unbandage it, treat me with exercise and lymph drainage massage and then rebandage it. I'll see her three times per week, or more if needed, depending on the progress made. Progress will be evaluated by the measurement of my arm. Monday or Tuesday morning I need to discuss this with Dr.Z (radiation oncologist) and make sure that it's OK to have the bandage on during radiation treatments. I'm not at all excited about having it on, period - but especially not excited about having it on during radiation treatment since I have to lay with my arms over my head and stay perfectly still for about 12 minutes (5 min of position scanning, 7 min of radiation) which is challenging enough without some itchy stinky and stiff bandage on my arm.

In addition to the two weeks of bandaging, I have a 10 minute exercise and massage routine I have to perform at home twice a day - forever. I'm choosing to view this part of the program as my forced meditation time which is good since I struggle to get that into my routine right now. I'll put a Bernie Siegel meditation on while I do the lymphedema routine which is pretty simple and take care of both things at once.

Thank you, God, for helping me to see this swelling before anyone else could. Thank you, Lord, for helping me find Richelle and having her in my insurance in-network program so that I won't go broke getting treated. I'm grateful for the many miracles You perform in my life every single day.

Love,
Julie

My letter to the editor has been published!

2010-02-14T09:11:00.000-08:00

Our local paper has published my letter regarding the planned cuts to the CA breast screening and treatment programs. You can see it here.

Radiation: 8 down, 25 to go -- hey what's up with my arm!?

2010-02-12T16:49:00.000-08:00

Radiation update: So far, radiation treatment has been going well. I get in and out of there rather efficiently. Well, except for the parking situation there but I'm not "going there" right now because I'm focusing on positive stuff right now. ;)

Every day, Monday through Friday, I drive a few miles to the radiation oncologist's office for my seven minutes of zippity zap radiation treatment. I arrive bearing gifts for the office staff and therapists every day because I love making people smile and laugh - especially people who see a variety of patients and prognoses daily. Physicians' office staff, therapists, nurses - they're on the front lines of this battle. They can make or break a patient's day, and vice versa. I choose to be the one that leaves them smiling and laughing.

Ut oh, lymphedema: On Monday night while getting ready for bed I noticed my left arm was feeling a little bit heavier and bigger than usual. I put the compression sleeve and gauntlet glove on as a precaution and in the morning I took measurements to compare my arms. My left arm was 3/4 inch bigger than the right one. It has begun. The dreaded L word: lymphedema. Dang! ;/ When a person is at risk for developing lymphedema due to the surgical removal of lymph nodes, their risk doubles when they have radiation treatment to the affected arm/area. My risk went from 25% to 50% chance of developing it. I was seeing the radiation oncologist that day (Tuesday) so I showed him and I as I suspected would happen I received a Rx for physical therapy and manual lymph drainage massage for the treatment of lymphedema. I've been wearing the sleeve/glove around the clock ever since. *sigh*

Thankfully, the sleeve has helped bring the swelling down to 1/2 inch. I got in for a PT consult yesterday, and tomorrow is my first session with the specialist. I'm so happy she works on Saturdays ;) and that Bob will be home with Cooper while I go. She's supposedly the best in the business which is good because there aren't very many certified lymphedema specialists in southern CA.

Overall: Other than the arm business, things are good. I feel pretty good - still tired more than normal and that will worsen as I get further along with my radiation schedule. So far, my skin is holding up just fine. I hear from others who have been through radiation that it takes between 2-4 weeks of treatment to see much affect on the skin.

Hair!: My hair is growing back and I joke that I feel like a human chia pet. Remember those!? I have been annoyed with the hair because it has been sticking straight up and won't "stand down" for me - at least not until today when I decided to grease it up with a palm full of shea butter cream. So, it's standing down now with an "enhanced" slick look haha. It's a tradeoff I'm willing to endure while it grows out. I was just so tired of seeing the fuzz standing straight up like that so I had to do something. I'm pretty sure Bob was convinced I was going to shave it all off again because I have said many times that I feel I looked better completely bald than with this fuzzy chia pet look. But I meant it when I said I had shaved it for the last time back on Dec.17th.

Vitamin D check: I had my vitamin D blood level checked and was surprised to find my level was still well below the recommended level. I was a 44 and experts say it should be over 60 but even better if closer to 80 based on studies looking at the link between cancer and vitamin D. I was surprised to be at 44 since I take 2000 iui of D3 daily. I called Dr.Hardy for advice and she recommended I double my supplement level and recheck my level in 4-6 weeks to see if it has helped.

Kidneys: Additional blood work results are in and they look pretty good. My white cell count dropped back down to just above 4 which surprised me since I was above 6 in January. My red cell count is good but my platelets are on the low side - but not too bad. One number that did concern me a little was my bun/creatinine ratio which was high but it could be because of the protein-only diet I had the 24 hour period before the test (which I had to do for the PET scan), but it could also be other things. I'm going on the assumption that it was the protein intake since doc hasn't called to discuss it with me and he's seen the results already. I've left a message for him just in case but I won't hear from him til middle of next week. I imagine we'll recheck it when I have the next blood draw to recheck all my other numbers in a month.

I have faith in God - He will protect me and get me through all of this as He has thus far, with flying colors :).

Fun weekend ahead: We have a fun weekend planned with trial toddler gym and music classes tomorrow and then Sunday worship and the start of a new small group meeting Sunday. Bob will be home this weekend and it will be great to spend some quality time with my boys :).

I wish you all a blessed weekend!

Love,
Julie

Healthy immunity boosting breakfast

2010-02-08T11:32:00.000-08:00

Omega-3 rich eggs with a healthy veggie mixture that includes: green kale, red peppers and onions sauteed in olive oil and garlic, turmeric and black pepper. 100% organic ingredients which studies show boost the body's immunity against cancer - especially breast cancer. It's pretty yummy too!
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Radiation Day 1:Introducing Esther & Eshean

2010-02-03T19:13:00.001-08:00

Radiation treatments began this morning. I arrived excited and ready to begin this next important chapter of my cancer ass kicking journey. I grabbed a bag of Smarties (the candy), my list of daily supplements (they wanted me to bring it - though they never asked for it so I'll bring it again tomorrow), and headed out the door.

My appointment was early - 8:45 am - so there weren't many people in the waiting room, just one other patient. He wasn't interested in the Smarties I brought in (he's diabetic) and I confessed that I don't eat candy myself anymore but it feels good to give so I invited him to take a handful of them to give to others that he encountered throughout the day and he dug right in.

A minute later I was being whisked to the back and peppered with questions about what I was wearing under my clothes. If I didn't know better I could have mistaken the questions for dating propositions haha. I knew where they were going with the questions and I proudly exclaimed that my new knockers no longer required hoisting apparatuses (aka bras) and thus there was no metal on my person other than the cross around my neck. I was delighted to learn that I could wear my cross necklace during the treatment.

I said hello to Esther (that's the name I gave the TomoTherapy radiation machine - a Biblical name meaning "star") and Eshean (the name I chose for the customized cushion I will be resting my head and arms on during the treatments - a Biblical name meaning "support") and I laid on the machine "couch" which is basically a hard table with Eshean on it for me to rest my head and arms in (raised over my head). Eshean was covered with a warm sheet and when I laid on him another warm sheet was placed over me as they lined me up to the alignment laser beam. They lifted my shirt to locate the tattoos they gave me for aligning with the beam, then lowered it and covered me up again and left the room.

Once the therapists (Joe and Mary Beth) were out of the room, they began the CT scan portion of treatment and the "couch" rolled me and Eshean into the big donut section of Esther where I stayed perfectly still for the scan and also during the brief pause between the scan and the radiation treatment. During the pause, Mary Beth came in and entered codes into Esther's control panel and left again and then I spent 7 minutes being radiated. I couldn't see the beams but I could hear them at work.

During that 7 minutes I thought about how relieved I am about the PET scan results, and how amazing God is for creating chemotherapy and radiation treatment, and of course the brilliant scientists and physicians He worked through to make it happen. Then I thought about how my left arm was going numb like it usually does if I have it raised above my head or if I'm leaning on it even the slightest bit. I began to wonder about whether the radiation treatment would cause lymphedema (it's a stated risk), and how safe it is that I'll be having 33 CT scans over 7 weeks. Then I remembered to not worry because He will take care of me no matter what. So I resumed breathing and the 7 minutes were over rather quickly and the "couch" rolled me out of the machine as the therapist reentered the room and handed me my schedule for the next 32 sessions.

I felt fine but by about 4pm I noticed my left breast and back of my armpit was already a faint shade of pink. Seems like it's a bit early (after just one treatment) to have color show up but I have faith that it's OK and I just keep putting on the greasy ointment to keep the skin moist and cool. I'm pretty tired - I'm sure it's not because of the treatment but rather the emotional release of the past 24 hours. I am going to bed early tonight - that's the plan anyway. Hopefully I can follow through and be in bed with lights out within the next 30 minutes. Another big and busy day tomorrow with a follow up appointment with Dr.G at UCLA, followed by support group and then radiation treatment #2 just before dinner.

Wishing you a blessed night,

Love,

Julie

PRAISE GOD - My PET Scan was CLEAR & NORMAL

2010-02-02T18:19:00.000-08:00

It's been a long time since I've had a good HAPPY cry - instead of out of fear and worry. I'm making up for lost time there as I can't seem to stop crying tears of joy since hanging up with Dr.B who called to inform me that my PET scan was NORMAL.

Thank you, God!

Thank you all for your prayers and words of encouragement. It means the world to me to have your support.

Breathing a huge sigh of relief,
Julie

Time for a PET/CT scan: praying for N.E.D.

2010-01-31T20:22:00.000-08:00

Well, it's time to see what's going on. They call it a "re-staging" scan. I go in first thing in the morning - scheduled to arrive at 6:30 am pacific time. I've been preparing for it today - no carbs, no caffeine, no strenuous activity, and no extreme temp exposure. I don't eat much sugar anymore anyway - that's been my new life since diagnosis. But being without any carbs is a major challenge for me since I eat so many veggies and fruits every day to help boost my body's natural immunity. I also typically drink green tea all day long - hot and cold. Not today. Only water and protein with only a small amount of low-starch veggies. No food allowed after midnight - no problem since I plan to be in bed by 9:30 pm.

The reason for all the restrictions is that the PET/CT scan (when used in oncology) looks for groups of cells consuming high amounts of radioactive glucose (which they'll inject in me an hour before the scan) because cancer devours glucose (yup, lay off the sweets folks!). Apparently, excessive temp exposure and physical activity can cause muscular uptake of glucose that's stored in the body - I think that's what they said. The restrictions are a bit of an annoyance but they help get a more accurate test result so it's worth it.

The way I see it (my selfish self) - the only acceptable report/outcome from this test would be one that indicates No Evidence of Disease. But, I don't get to call the shots in this epic - only God does. So, I'm laying it on Him - I'm trusting Him to use me for His purpose now. I surely hope and pray that His purpose for me is to spend the next 30+ years as a cancer patient advocate, educator, author, and speaker - and at the top of my list is being earthly mommy to my precious Cooper.

I don't know how quickly I'll get the results but I'll be spending lots of time/energy praying and meditating between now and when they come in. Thank you for adding your prayers to mine. I really appreciate it.

Love,
Julie

PS - Hey cancer, seriously, if you know what's good for you - you'll have taken your surgical and chemo eviction notices seriously. Just for good measure we're gonna nuke your butt into oblivion with radiation starting this week!

Breast cancer sister warriors powwows

2010-01-30T20:52:00.000-08:00

Every Thursday I go to UCLA to join other breast cancer survivors, currently in treatment, for what I like to call the sister warrior powwow. It's a wonderful support group with several women from all walks of life, and all types and stages of breast cancer represented. These women are amazing. They get it. I need them. I love them.

Occasionally a few of us get together for lunch and laughs after our group meeting is over. This past Thursday we had a really good laugh when three of us walked into a restaurant, took off our hats and looked at each other and realized that we represented the three stages of chemo hair - gone while in chemo, just starting to grow back 6 weeks post-chemo, and the cute pixie cut about 6 months post-chemo. We had the server take a picture. As I was preparing to post this I realized that the three of us in the picture below are currently all the 30-somethings in the group. Love you, ladies!

Jessica, Julie, and Tira
January 28, 2010

Quiet house, noisy mind

2010-01-29T03:16:00.000-08:00

I'm laying in bed. The lights are out...have been for hours. Everyone but me is sleeping. The house is quiet but my mind is not. Heard today that a friend in my breast cancer support group has had a recurrence. Don't know the details. Don't know if I want to know. She had only recently finished treatment...maybe 3 months ago at most. Triple negative damn it. My heart aches for her. For me. For all of us.

Spoke to Dr.B tonight. Getting my PET scan soon. Stopping in today to pick up the order and have a blood draw. Need pre-radiation baseline and to assess my vitamin D level to ensure I take enough of it in supplement form. We talked about Zometa again. Can't elaborate on that yet. Soon.

I need to replace the worry and fear as soon as possible but need to get it out so it's not bottled up inside because that would be bad too. I need to let someone in particular know how to better support me because their own emotions are causing this person to say and do things that are hurting me deeply even though I know that is the very last thing this person wants to do. It's happening a lot and it's making it really hard for me to feel supported by this very important person. I pray that we can fix it asap.

I'm laying it all in God's hands. Asking Him to help me leverage my skills and faith to find solutions and bring me some calm of mind.

Thank you for being here. For your prayers and encouragement.

It's after 3am now. I hope I can get some sleep before the alarm goes off.

Love,
Julie

Sent from my Verizon Wireless BlackBerry

A call to action for Californians

2010-01-27T10:10:00.000-08:00

I sent off the following letter to editors at several local newspapers and would ask that my fellow Californians do the same, along with calling the Governor's office and State Legislators' offices to demand reconsideration of the cuts to critical breast cancer screening programs in CA.

Dear Editor:

My breast cancer was found accidentally at the age of 37. I felt a lump that I knew in my heart was not dangerous. The tests were ordered and my instinct was correct about that lump. But, the tests discovered a sizable tumor on the other side and in my lymph nodes - masses that neither me nor my doctor could feel. I had an aggressive type of breast cancer, stage 3. The tests saved my life.

In January, the Every Woman Counts program, that screens 350,000 underserved women in California annually, closed its doors and won't resume screenings until July. When the program reopens, women under 50 will not be served. To save a few bucks - just one half of one percent - having little impact on CA's massive budget deficit but having a devastating impact on the women who will die as a result.

When breast cancer is detected early, the five year survival rate is 98 percent. The lack of regular screening leads to late stage diagnosis (like mine) when treatment is more expensive and survival is less certain. Because of my age (under 40), I was denied routine screening, now my treatment has surpassed the $250,000 mark.

More cuts are likely. California may eliminate the program that provides breast cancer treatment for low-income women, leaving 9,000 women with breast cancer no treatment options. There are women on the front lines of our troubled economy who will lose their job and their insurance. One in eight will be diagnosed with breast cancer. Balancing the budget shouldn't come at a cost of risking their lives. Why are we turning our backs on women in our state when they need us the most? Every woman counts to me - do they count to you?

Respectfully,
Julie Olsen

The next chapter: Radiation

2010-01-26T10:18:00.000-08:00

It's already that time - for the final big chapter of treatment to begin. Hard to believe, really. Today I go in for what they call the "simulation". They'll take and use CT scans to help them program the tomotherapy radiation machine in a way that carefully targets the area where they found the cancer - in my case the targeted area will be my left armpit since I no longer have anymore than 1% of natural breast tissue left in my body since the bilateral mastectomy. In a very odd way I guess, I'm most excited (and nervous too) to be having the CT scans. I'm thinking that if there's any detectable cancer left in that region of my body it will show up in the scans. Of course, they're not scanning the rest of me - that will happen after radiation is over to determine if I'm "all clear" (which I fully plan on being) or not (which is simply not an option). I'll be much more excited and much more nervous and anxious about THAT scan.

I believe today I'll be scanned, posed, tattooed (yup, little dot tattoos to help them guide the machine to the right spot every day during treatment), and scheduled for my treatments which will begin next week. I'll come back and post more details later today about how the simulation went and anything else I learn while I'm there.

I'm praying for a smooth, , powerful, effective, and successful radiation treatment protocol, beginning today. :)

Let the next chapter begin!