Deconstructing Sue

Last night was a sleepless night with pre-surgery anxiety.  I am 100% sure that the surgery to remove the implant and damaged skin, scheduled for tomorrow, is absolutely the right decision.  Yet I spent the night, tossing and turning, deconstructing every aspect of reconstruction and deconstruction.  Part of me wishes that I had  originally chosen not to reconstruct at all, saving myself a lot of pain, surgery, and struggle over the past year.  On the other hand, I’m not convinced that I want to spend the rest of my (long) life disfigured in that way.  Seems a petty thing to worry about after all I’ve been through this past year.

Lympha Press

My arm in a Lympha Press

What I do know, is that the implant has to go.  Timing is everything, and, sadly, I may have postponed this surgery a week too long.  This week was a struggle with searing pain in my chest and back and lymphedema in my right arm.  My skin is unable to heal itself, and I’m on my third course of antibiotics to keep the infection in check.  I am counting the minutes until I can get the surgery over with, and allow myself to heal.  I wanted to be sure before doing anything so I wouldn’t second guess my decision.  My PT said, “you can second guess yourself all you want, but it won’t do any good.  You may have second guessed a decision to do the surgery earlier, too”.  She has a valid point.  All I can do is choose options and stick with them.

Again, timing is everything, and happily, I got to spend last weekend (Valentine’s Day) in Chicago with Andy at the motorcycle show and pizza meet-up with friends.  (As my good friend Mary said, “combining romance and motorcycles – brilliant!”).  Absolutely!  We had so much fun at the motorcycle show that I forgot all about the troubles I was having.  It was worth postponing everything so I could fit that rejuvenating road trip in.  I may have found my next motorcycle, too…

wee-strom

Weeeeee-Strom

Ironically, tomorrow’s surgery (February 23rd, 2015) is one day short of last year’s mastectomy (February 24th, 2014), marking my cancer-free-versary and, with it, a lot of emotion and difficult memories.  It took a year to (not quite fully) recover from the pain of the mastectomy, suffering the side effects of axillary web syndrome, radiation fibrosis, and lymphedema, along with the painful process of filling the tissue expanders to stretch my skin and muscle to make room for an implant.  Then another surgery to exchange the tissue expander for the implant, and now another surgery to undo all that, removing the implant and damaged skin to be left with a flat chest wall.  It’s way too much trouble, really, just to have the appearance of breasts.

So, even though I have a fear of facing another surgery tomorrow, another recovery, and the disappointing setback of losing another “breast” (or foob, as those of us with fake boobs refer to them) I remind myself, as I approach the one year mark, that the important thing is that the cancer is gone.  All the rest of it is just hurdles to clear on the road to recovery.

Second Opinion…and Third…and Fourth

In my mission to avoid surgery, I have gathered the opinions of many doctors, peers, and experts over the last 3 weeks.  After talking with Dr. Tjoe, my surgical oncologist, I decided that I wanted a chance to meet with the other plastic surgeon that she had consulted with about my situation.  I felt the need to get a second opinion and hear about the other muscle sparing options that were mentioned.  I also consulted with my Dermatologist to get a non-surgical perspective.

I got in for my second opinion on February 2nd.  The appointment went really well.  Surgeon #2 spent nearly an hour and a half with me discussing my options and answering my questions.  He took the time to show me pictures of procedures I might be facing so I could see the outcomes I might expect.  We ruled out the TRAM Flap (abdominal) since I just had fat grafting from my abdomen.  He explained that the tissue could be damaged and blood supply compromised.  By the end of the appointment, his recommendation was for me to undergo not one, but three additional surgeries.  First, remove the implant and damaged skin and allow at least 3 months for my skin to heal.  Then he would do a LAT Flap, using muscle, tissue and skin from my back to replace the skin that was removed in the previous surgery, and put in a tissue expander to stretch the area to the desired size.  Finally, I would have one more surgery to exchange the expander for the final implant.

Not thrilled, because, going into the appointment, I had hope that there would be a non-surgical way to heal, and coming out of the appointment, I was facing three more surgeries.  He was also willing to let me try to heal a little longer, and prescribe a cream that is used with burns and difficult to heal wounds.  He also suggested that I continue with the antibiotic for up to six weeks.  I did learn a lot at the consultation with the second surgeon, and I took that information and continued to read and learn more.

Yesterday, I returned for my follow up with surgeon #1.  We discussed the other surgeon’s strategy as compared with his.  He feels that it would be overly conservative to spread it out over 3 surgeries.  He believes that the cellulitis is confined to the skin, thus making it possible to replace the damaged skin with the LAT Flap and keep the implant in place.  I like the idea of only one more surgery, but I’m not entirely comfortable with this option either.  The last thing I want is to go through the surgery only to have the infection continue, forcing me to have another surgery to remove the new implant.  Then I’d have to start all over again, and would have sustained damage to my back in the process.  It seems to me that the infection goes beyond the skin, because I have pain in my side, chest, back and arm. My arm is very swollen.  He said I could have an ultrasound guided aspiration and a culture to test if the infection is deeper into my tissue.  Otherwise, he could make that determination during the surgery by taking the implant out and testing for signs of infection before deciding whether to continue with the reconstruction or not.

My first thought upon leaving that appointment was to let surgeon #1 attempt to do the reconstruction in one surgery, with the understanding that, if there was any sign of infection, I would want to simply remove the implant and heal before attempting reconstruction.  Leaving the surgeon’s office, I made my way over to my medical oncologist for a follow up appointment.

Being early, I decided to detour upstairs to pick my physical therapist’s brain and ask her about a compression sleeve to deal with the lymphedema in my arm.  When I showed her my arm and explained the pain I had, she assured me that the swelling was a reaction to the ongoing infection rather than lymphedema.  Her explanation was that lymphedema does not cause pain or limit range of motion.  She also told me that compression sleeves are not the most effective way to reduce the swelling, since “one size fits all” doesn’t take into account the fluctuating levels of swelling.  Instead, she gave me a wrap (like an ace bandage, but not so stretchy), and instructed me on how to use it.

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On to the oncologist, I got blood work done, which showed that my white blood cell count was still low, not helping me fight the infection.  I decided to withdraw from the study drug since that was most likely the cause.  I also asked the oncologists and her nurses their opinions on the surgical decision I was facing.   It was a long day of appointments and a lot of information to process.  I didn’t feel ready to make any decisions until I had a chance to sleep on it.

Today, I feel ready to move forward with my decision.  I have spoken with 3 surgeons, an oncologist, a physical therapist, peers in my support group, and on and on.  I know that I’ve exhausted all other options, and surgery needs to happen soon.  The incision wound is getting worse, not better, after a month of trying to save the skin and heal.  The pain and swelling in my arm is affecting my day to day existence.

My gut feeling is that I need to get the implant out as soon as possible and heal fully before attempting another reconstruction.  Then when I am sure that my skin is better and the infection is handled, I will do the LAT flap procedure straight to the new implant.  So, 2 surgeries rather than aggressively doing one surgery or conservatively doing 3.  Seems like a good compromise.  I’m ready.

Cancerversary

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One year ago today, I heard the words, “you have breast cancer”, forever changing my life and challenging my limits over the course of the year. I’ll never forget that day. My time on this planet became more precious that day, and my future became more fragile. Looking back brings a flood of emotion as I recall the experience of that moment in time, now altered by the lens of time and new perspective. I’ll count this year, and every year that passes, as progress towards the goal of so many survivors – stay on the right side of the percentages to become a 5-year survivor, a 10-year survivor, and on and on.

Amongst cancer survivors, this date is known as a Cancerversary. There is some debate regarding which date truly represents a Cancerversary. Some choose the day they were diagnosed. Others choose the day surgery removed the tumor and they became cancer-free. Others count their anniversary as the day they complete all active treatment. For me, there are several dates that will forever stand as milestones on this journey. I mark January 31st as my Cancerversary, the day I learned of my diagnosis, a day I will never forget. I consider February 24th as my Cancer-Free Versary, the day I became cancer free. Other dates also are permanently etched into my mind; the first day of chemo, last day of chemo, end of radiation and active treatment, reconstruction surgery.

The details from that day one year ago are as clear today as they were then. I left the doctor’s office knowing that it was not going to be good news when the doctor called me with the results of the biopsy. Too much about the appointment pointed to bad news. I was there for nearly three hours, getting images and more images; a second look, a third look. The way the doctor shook my hand when he came in the room was the way you shake hands at a funeral, with a deep empathy in his eyes. He held the nurse back from her lunch break so that we could do the biopsy right then and there, rather than scheduling for another day. As we were finishing up, the doctor said, “It doesn’t look good, but I’ve been wrong before”. Not a terribly reassuring statement, I left the appointment knowing what I had already suspected.

I expected the doctor’s call late in the afternoon, so Andy took me out to lunch to pass the time and keep my mind busy with something else. The doctor called earlier than I expected, so I barely heard the words over the din of the lunch crowd. His words confirmed the cancer. I shouldn’t have been shocked, I already knew in my gut what the doctor was going to say, but actually hearing it verbalized was a tough blow. I was thankful that Andy was there to hug me and reassure me, as he would come to do frequently over the course of the year. On the ride home, another call came in, this time from my primary care physician, with her referral to a breast surgeon, who she swore she would go to had it been her diagnosis. And, thus began the wild ride of tests, surgeries, and cancer treatment that would dominate my life for a year.

One year has passed. So much has changed. Reflecting back on why it seemed to be such a busy year, I started counting up Doctor’s appointment, which then lead me to review medicals bills. Then, for some reason, those credit card commercials with the “Priceless” theme popped into my head, (some things, money can’t buy. For everything else…).

Cancer Treatment = One year, 177 appointments, 3 hospitals, 2 surgeries, chemotherapy, radiation, hormone therapy
Medical Bills = $646,474 and counting (thank God for good health insurance)
Time lost to sickness, side effects, and recovery = 1 year
Being a Cancer Survivor = Priceless