Once again, it has been quite a while since I posted. I am now 4 weeks post-op from my first reconstructive surgery and start radiation today. I have also received much more information regarding the issues with my right arm. After the last post, I was able to have a number of additional measurements done, and see my surgeon who did the lympha procedure.
The reconstructive surgery went well and was by far the least invasive of the three I have had. While there was definitely still a recovery period, I felt much better than after the first two procedures. My scar count is getting pretty high at this point! I am still two weeks from being released for all activity post surgery, but things are going well.
After seeing the specialist, I was informed that even though I am showing pre-lymphedema signs, I do not yet have a lymphedema diagnosis. This is actually great news. At this point, I am wearing my compression sleeve the majority of the day, working on stretches, and self lymphatic drainage massage. I am supposed to do 3 months of physical therapy with a lymphedema specialist. Unfortunately, there are not many people around here with the specialty I need, and my first appointment is at the end of September. We were hoping to start well before radiation, but that didn’t work out. I was also fit for a pump, but have not heard back from the provider/insurance yet on coverage.
Unfortunately, my arm is still really bugging me. All days are not created equal, and the more careful I am and the more I wear my sleeve the better. I am slowly getting back to work as well. I am very excited to see some friendly faces (via zoom) and get back to a job I love, but I am nervous and apprehensive. I have only spent a dozen or so hours at my desk the last few days, and it has seemed to aggravate my arm quite a bit. I had to create a new workspace in our house and went through three desks and three chairs trying to find a combo that works and hopefully minimizes my discomfort. I have always been a bit crazy, but I think all the desks and chairs in and out of the house cemented that for Jeremy.
There is still hope that my body is just recovering from the three surgeries and chemotherapy and that over time my arm will heal naturally. Most of my concerns for starting radiation revolve around my arm. It will likely make things worse. I just don’t know to what extent. I know I mentioned not doing radiation, but after circling back with my radiation oncologist, her opinion about my best path forward has not changed with the additional issues I am experiencing with my arm. Like I have said from the beginning, being aggressive with the cancer was always the plan. The hard part is the other part of my mantra: to be conservative with my body, and starting radiation knowing it will likely increase the discomfort and problems with my arm is a tough pill to swallow. I truly hope I am making the right decision.
I know that radiation is nothing compared to chemo, but the one thing that seems similar is that everyone’s experience is a little different. It might make me a little fatigued or it might make me exhausted. My skin might handle it fairly well with mild sunburn-like effects or I might have fairly severe burns and discomfort. I am trying to roll with the punches and hope for the best. I am trying to not set myself up for disappointment like I managed to do with my chemotherapy. I am a bit nervous and anxious going into things today. For one, I have to hold my right arm above my head for a very extended period of time today. After today, it will only be about 15 minutes in that position each day which feels more manageable. I have a few special lotions, creams and ointments that will hopefully help my skin through this process. Radiation will end at the end of September.
I know I have mentioned my sleep issues a number of times. Tomorrow I am seeing someone at the Stanford sleep center. I am a little apprehensive about what they will say but am hopeful it could be a helpful step forward. I am also set to see a new PCP next week thanks to some friends that reached out and connected me to their doctor after my last post. I still have way too many appointments in general but know that will calm down as well.
We finally have all three girls at school. Emma is very excited to “finally” be at middle school. Lane is enjoying her last year and being the oldest on campus at her elementary. Halle is in a new preschool that is quite magical and seems like a great place for her to grow and learn this year. The adjustment for the older two was easy. After 18 months at home, they were very ready to be on campus and have no real issues with wearing a mask all day. Halle definitely had more mixed emotions, but is adjusting well and I believe she will love it without hesitation soon.