Christmas with Cancer - How things were throughout December.

December 6 (Saturday)  I got a pixie cut in preparation for chemo!  My cute sister-in-law Cassie cut it for me.  Although it took some getting used to, I'm really glad I cut it.  Doing so, gave me come control over losing my hair, and when it finally all falls out, I won't have as much of a mess to deal with.

Week of December 8 - I call everyday for my BRCA results; I need them so we can finalize a decision regarding my surgery.   Finally, on Thursday, the nurses call to see where my results are.  The company doing the testing hadn't done a thing because my insurance wouldn't cover it.  Um, communication anyone?!?!  Our choices were to either pay $3000 out of pocket for the testing and wait another two weeks for the results, or redraw my blood and send it into a different company and wait three weeks for the results.  The whole BRCA thing was weird because the company I originally sent my blood to had a patent on testing the gene.  There were a lot of court decisions recently on whether a company had the right to patent a gene, and obviously they decided you couldn't have those rights, so decided to redraw the blood and send it to the other company.  However, we still had the issue of surgery, which we were putting off till we had the BRCA results.  We decided since the chances of me having the gene were so small (less than 10%) that we'd chance it and just do the lumpectomy.  We didn't want to wait for the results because that would just push back my treatments.  This was the second time (the first time being right after my mammogram/ultrasound) that I really broke down.  This was a hard day for me and all the uncertainty and waiting finally took it's toll. 

December 15 (Monday) I went in to get my blood drawn again for BRCA test #2 and completed all my admitting paperwork for the hospital.
I also submitted an application through the marketplace for different insurance next year.

December 16 (Tuesday) Surgery with Dr. M was today around noon.  I was scheduled for a lumpectomy, axillary lymph node dissection, and the placement of a port.  The port is a small device that is placed under my skin just below the collarbone.  It hooks directly into my jugular vein (every time I say that I shiver...)  The chemo will be delivered through that port so they won't have to worry about giving me an IV each time I go in.  If I were to do an IV each time, my veins would be under a lot of pressure and there's a possibility of vein collapse; the port solves that problem.  

We walked into the hospital waiting room and saw Matt's mom waiting there to keep him company during the surgery; it meant a lot to him.  They took me back for surgery prep, the nurse was nice but didn't do a great job with the IV.  The nurse in the OR was very caring and smiled and held my hand while they put me to sleep... no matter how big or small the surgery, I think it's nice to hold someone's hand when you're going under.  The surgery was outpatient and I was ready to go home by about 5:00 PM.  Nana and Papa had come to take care of the kids and the ward brought by dinner.  It was so nice to be well taken care of.  Matt waited until the next morning to tell me that Dr. M was concerned with how the surgery went.  He wasn't confident that he'd been able to get clear margins because the cancer was significantly larger than what had shown up on the MRI and it looked like it had spread "fingers" throughout my breast.  He also took out more lymph nodes than the 1-2 he thought he'd have to because there were multiple that were visibly affected.   We need to wait for the pathology reports to be sure of any of this news so we're trying to be optimistic.  My recovery from this surgery went well.  I had a drain tube coming from under my arm where the lymph nodes removed and I also lost a lot of movement and sensation from their removal.  The doctor thinks it should return close to normal, but having lymphedema as a side effect will always a concern, especially after radiation.

December 19 (Friday) I went in for my post-op appointment with Dr. M.  He says I'm healing well but we he'd called for the preliminary pathology reports and what he feared during surgery was actually the case... the cancer had spread throughout my breast and I had enough lymph nodes that were positive with cancer so far in their testing that I am now considered Stage III.  Cue breakdown #3... nothing like cutting your mortality rate by 20-30% to make your day turn sour.  Since I'm writing this with hindsight, it makes it sound like I was full of tears throughout this month which was actually not the case.  I had moments of fear or sadness but overall I was very upbeat and loving life.  However, despite my attempts at optimism, reality trumps it sometimes and we all need a good cry; this was one of those times. 

Just as a reference point, there are a variety of places that give you the survival rate for breast cancer.  Stage I is 100%, Stage II is 93%, Stage III is between 51-72% depending on the subtype, and Stage IV (when the cancer metastasizes to other areas in your body) is around 22%.  I am choosing to believe with my (relatively) young age and (relative) health, I will definitely beat this crap and be in the 51-72%!!

December 22 (Monday) This was a big, amazing day.  I was hosting the Pierce family party at my house.  The whole family was concerned that I was hosting it, but it gave me something to look forward to and I was so excited to see everyone.  My mom and Kim came down for the day to help out and we had Jackie's kids play with my boys while she and Colby took Blake to the hospital for ear tubes.  When Jackie dropped off the boys she gave me a shirt that she'd made that had "Team Heidi" embroidered on it.  She, Mom & Kim were all wearing one under their sweaters as well.  I, of course, cried; it was so sweet!!  I left everyone home for a while so Matt could take me to Dr. M to get my drainage tube removed (hallelujah, that thing was annoying).  When I returned home from the doctors, everyone from my family was at the house ready for the party and they were ALL wearing the shirts.  Jackie and her husband Colby had embroidered over 40 shirts!!! Seeing everyone dressed up in support of me was one of the most overwhelming experiences I've had.  I hugged everyone and smiled for a while but I snuck back into my bathroom after a bit for a cry... I didn't want to scare anyone with how emotional I was feeling and give them the wrong idea... I felt so much love and gratitude and blessings.  Okay; I'm getting seriously emotional, I can't write anymore about this day. 

December 24 (Wednesday) It was Christmas Eve and we met the Green family for a luncheon at Lamb's Cafe in SLC.  This was the first year that the entire family was at this lunch and it was so great to see everyone.  While we were driving to Salt Lake, I got a call from Dr. M that my pathology report was finalized and that he'd leave it at the front desk for me.  Knowing that I wouldn't make it back to their offices before they closed early for the holiday, I called Biffy and asked her to get them for me - she didn't even hesitate; that's a bestie for ya.  When we got home, the first thing I did was open my report and the results were the first bit of good news I'd had and the best Christmas present ever - Yes, the margins weren't clean, and yes, there was enough cancer in my lymph nodes to keep me at a stage III.  However, the cancer was only in 9 of my 12 removed lymph nodes!!!  This isn't a guarantee that the cancer hasn't spread to other parts of my body (thus pushing me into the dreaded fourth stage) BUT it is a very positive sign - I was elated!!

December 29 (Monday) The week after Christmas brought more good news - I got my BRCA results back and they are negative!  This means that I won't need to have my ovaries removed and my sisters and Lauren won't need to have testing done.  Yea!!

December 30 (Tuesday) Okay, I have to warn you about this section that I know is going to give my mom a heart attack for sharing... I'm an open book and really don't care who knows what about my life.  I've gotten to the point where I just think "it's a medical part of life - why be embarrassed, just deal with it."  This is a detailed breast reconstruction post so if you're my brother or my bishop or something like that, and feel uncomfortable, and/or if this kind of stuff grosses or freaks you out, then skip the rest of this post.  You've been warned!!

The last day of the year I met my new plastic surgeon Dr. R.  He works out of McKay Dee Hospital but travels to Davis because he and his partner are the only plastic surgeons close by that will do reconstruction at the same time as mastectomy.  When I first met Dr. R, I wasn't sure what to think of him... he was kind of irreverent and came across as a bit cocky.  Matt loved him, so I just chalked my suspicion of him to my discomfort at even meeting with a plastic surgeon.  Every doctor I've met with thus far has been interested in saving my life whereas this appointment was centered on something cosmetic, so his energy and enthusiasm just felt out of place and I just felt weird.  Regardless, I was moved by the fact that he only specializes in reconstruction and Dr. M was very complimentary of his experience, so I just went with it.  

I was leaning towards doing the mastectomy bilaterally just because emotionally I felt like I couldn't handle any more surprises and I also had a benign lump in my left breast that I didn't want to take any chances with (especially since the MRI was off on the right breast).  Dr R. thought that was a great decision, especially since it's easier to achieve symmetry in reconstruction with the bilateral mastectomy.

Just as every kind of cancer is different, everyone's path for reconstruction will be different depending on what treatments they're receiving and/or what body type they have.  In my case, I'm really limited to just about one option.  I'm going to have expanders placed under my muscle at the time of the mastectomy.  They need to be placed under the muscle because if they're next to the skin, then there's a large chance they can be "rejected" by your body.  Since your muscle isn't an organ (as opposed to the skin) there isn't that risk.  After I've healed up from the surgery, I will go in a few more times to have more fluid injected into my expanders to stretch out the skin in preparation for the implants.  They don't want to expand my breasts too much or the radiation won't be as effective.  I'll keep the expanders in place till at least 6 months after radiation is completed - the skin needs ample healing time.  If my skin heals up nicely, they can just remove the expanders and replace them with implants.  If it gets too damaged from the radiation, they'll probably do a skin graft from my back and shoulder area to complete the reconstruction.  Fingers crossed that my skin stays healthy!!!  I will also have the choice of leaving my breast without nipples, tattooing nipples on to look 3D, and/or reconstructing a nipple in addition to tattooing it - I really don't care about any of that right now, it's just a weird detail.  So in another year, assuming I can kill all this cancer, I will have my final surgeries for reconstruction.  

And on that personal TMI note about my boobies (sorry Mom!), I'm going to sign off and head to bed!