I honestly feel like I have spent so much time the last two weeks working on physical therapy (on my own) trying to get my range of motion back in my right arm before this next surgery on Thursday. So as the title reads, I am working hard on being able to put my arms up. It gets better all the time, and in general, my energy level and ability to accomplish things increases regularly. All of which is good news for healing and as a mother of three.
Last week was a bit rough. I saw the oncologist from UCSF that I loved so much, and, after a tense and stressful hour with her, I left feeling uneasy and second-guessing myself.
To be honest, it felt a bit like deja vu. It was on the drive home from UCSF the first time when I received the call that my entire Stanford team needed to change. The feeling on the drive back this time wasn’t quite as dire, but not too far off. I am getting better at handling the curve balls, but they still sting.
Having the ability to seek the opinions/guidance of multiple doctors and various institutions is truly a blessing and privilege, but it does not come without baggage. No two places utilize the same protocols, and from my experience, no two doctors have the exact same opinion. If I have learned anything about cancer cells, is that there is still so much unknown. Great strides have been made in the field, and I do feel lucky for the wealth of knowledge that already exists, but there is still so much grey area.
On Friday, I was finally able to connect with my Stanford oncologist, and he was able to ease my mind and help navigate my concerns. We agreed to stray from what I believe to be the typical protocol and order some additional testing (oncotype) that we hope will help solidify chemotherapy decisions in two short weeks.
Even though the UCSF oncologist didn’t love the way my pathology report from the third party read, she agreed to present my case at the tumor board yesterday. She told me she could not make any promises that the radiation oncologist would be willing to weigh in on my decision to proceed with the axillary dissection quickly. She emailed me that the team agreed my Thursday surgery was the next best step. After lots of thought, review of various studies, and lots of talk about statistics, Jeremy and I had already come to this conclusion at the end of last week but it was nice to get the reassurance.
Not many doctors will put any weight or give credit to the prophylactic lymph procedure that I am hopefully a candidate for this Thursday. I understand that doing this before lymphedema has presented itself is new, and there is not enough peer-reviewed research or publications for most doctors to put any weight on the likelihood of it helping me out from a statistical perspective in terms of my likelihood of developing lymphedema, but I am excited. The doctor doing the procedure is a rockstar. She also totally owns who she is, which I deeply appreciated. She walked into the first appointment with sequin sneakers and the coolest nails I have seen outside of Instagram. She has been head of too many departments at Stanford to count, and the accolades and awards are jaw dropping. I keep feeling so lucky and a bit overwhelmed with the opportunities presented, but ever so grateful.
So this week I am trying to get ready for Easter, which falls just three days after surgery, and Lane’s 10th birthday next Tuesday. Jeremy’s birthday is the 9th, but luckily he is a trooper. I should be healed more and, sadly, the guy is used to coming at the end of the birthday and Easter bonanza. My parents (Dad and Jerilyn) arrive Wednesday evening and we are prepping for their arrival as well. Not excited for another surgery, but a few days in bed won’t be bad.
The recovery for this surgery is much shorter. Hopefully two weeks. Only bad news is chemo is likely to start right about two weeks after the surgery. Since I still have no idea what chemo will look like for me, I am just trying to remain positive and open-minded. From everything I have heard from doctors, it sounds like many women have different perspectives and goals for chemo and their lives. For me, longevity and long-term health is my number one priority so whatever needs to happen in the short term, we will deal and manage as best we can. That being said, I am not ignorant to the fact that some of the more aggressive treatments also bring other potential long-term health issues. We will listen to the doctors and the science, and do the best job we can to make the right decisions over the next few weeks as we have thus far.
As we did last time, my friends will post on my behalf and let you all know when surgery is done. There will not be the same amount of information to share quickly this time as in-depth pathology will be needed to determine if more cancer is present. As always, thank you all from the bottom of my heart for all the help and support. The outpouring of love and prayers is deeply felt and appreciated.