It's been several weeks since I've written a full post (the Quickies are useful for FB, but don't appear on my Here and There blog). And, a LOT of things have happened since then.
Status of the Inframammary Fold
Thanks to the Tacrolimus ointment, I haven't had to use the steroid ointment any more. It's been pretty well miraculous, but I have to keep using it otherwise the burns flare back up again. The range of skin colors under my left breast changes from day to day, but there has been definite improvement, and for that I'm grateful. I may end up experiencing permanent skin color changes of the entire breast, but it's such small potatoes compared to everything else that I just don't care.
I will see Dr. Singh on Monday for my monthly visit with him. It will be nice to report that I only experienced severe burning and pain this month after I got my third J&J shot.
Ooph! and Genes Update
As of today, I still don't know what the status is with the genetic testing for Lynch's Syndrome. It's been frustrating to wait for nearly a month without those results, and it's been anxiety provoking to be in limbo about the kind of surgery I'll have next week.
Yesterday, I reached out to the genetic testing company, Invitae, and heard back from customer service. They said the results will return on or before May 3. My surgery is April 29th.
I sat with it for a bit before I made a decision. I decided that I'll go ahead with the oophorectomy (ovaries and tubes out) unless the results come back by end of day Tuesday and say that I've got Lynch's. In that case, it's a hysterectomy.
When I met with Dr. Cernadas on the 12th, she said that if I do need a hysterectomy, I can keep the same surgery date, and she'll do it laproscopically using a fancy robot. She also told me a lot about Lynch's Syndrome that was very helpful.
Lymphedema
Thanks to all the damage I've experienced due to surgery, removal of two lymph nodes, and especially the radiation burns, I'm now being treated for lymphedema of my left breast and arm. Twice a week (with a break for the surgery and healing afterward), I'm meeting with talented physical therapist and lymphedema specialist Manasee Korgaonkar.
The first time we met, Manassee asked me many questions and performed a fair number of measurements. The difference between my two arms is very small, but I'm experiencing pain from my inner elbow up to my shoulder on the left side, as well as in the breast. She said the pain is the result of the strain of my lymph system to remove the fluid that's causing the swelling, primarily in my left breast and armpit area.
The thing is that it's not hugely noticable in appearance (although Manasee's trained eye noticed the breast swelling as soon as I removed my bra during the exam). But it's painful all the time now. The worst is first thing in the morning. Sometimes, I can barely lift my arm over my head before I do the exercises.
Other than the exercises that I received from St. Peter's in advance of the surgery, so far, the treatment is gentle movement and massage by Manasee. The goal is to move the lymph fluid swelling away from the breast and armpit to be absorbed by the lymph system throughout my torso.
Prior to the burns and after the seroma (remember my seroma? I know. Seems like a year ago already.), I had been wearing compressive jog bras, which had been helping. However, the burns prevented me from wearing any such clothing from January until this week. Now that the Tacrolimus has worked magic, I'm returning to wearing them again to help with the treatment. Manasee gave me a gel pad that looks and feels like silicone, but isn't, to wear between my burned skin and the band of the bra. I've tried it a couple of times, and I'm undecided if I'm going to keep wearing it.
Manasee also told me to buy some lymphedema-specific garments to wrap around me while I sleep, as well as different, compressive bras. So much fun. I'm not sure how that will work after the surgery, but I'll ask Dr. Cernadas.
Manasee also said to practice deep breathing and work on my posture. It also will help with the post-lower abdomical surgery healing. I already do this a few times daily for extended periods thanks to meditation. I'll just have to focus on it a few more times a day.
Mental Health
Because it's been getting rough to deal with the runaway train that has become all the medical stuff, I've returned to talking with my therapist on a weekly basis. So far, it's been powerfully effective. We've always worked well together, but it definitely works best when I hit the ground running and go for the deep dive.
When I talk with folks about what's happening right now, what I hear most is, "That's a lot." Yes, it is. It's a whole lot.
I'm especially down about the lymphedema bit. Manasee said that from here on out, I have to be really careful about how I treat my left arm and breast so that I don't risk further swelling and pain. I had been looking forward to working out like I used to, but that's just not how it's going to be. I'm having a tough time wrapping my mind around that.
Prior to making the decision about the surgery, I had been anxious and frustrated about not having the genetic testing results. I know what it's like to live in limbo about all kinds of things, but the stress level was just getting to be too much for me. Making that decision was empowering and relieved some of the stress.
I also had been filling so much of this month with many social engagements, adventure days, and activites. I needed to slow down and deal with everything. At this point, I only have one more adventure day before the surgery (tomorrow with Thom Curtis at the NY Botanical Garden), and I'm going to enjoy it fully before this extremely full surgery week.
Last, but far from least, thanks millions in advance to my very dear friend Patty Scott, who will be coming to take me for the surgery and care for me for the first couple of days. I'm incredibly fortunate to have her in my life, as well as a handful of other wonderful folks who will be showing up for me in my time of need.
Thanks to you, dear reader, for keeping up with my Breast Cancer Diaries. Thank you for all your kind support in all the ways you give it.
Don't forget your screenings. Early detection is key.
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