Tuesday, June 21, 2011

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

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

Sunday, June 19, 2011

Reconstruction, take two!

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."

Sunday, June 12, 2011

Why the Susan G. Komen foundation has lost my support

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