The Breast Cancer Diaries, vol. 2, issue 13

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.

The Breast Cancer Diaries, vol. 2, issue 12

Updates and Scary Bits

Last week, it was all docs, all cancer, all the time. Those weeks are exhausting both physically and mentally. This update, as most of them are, is a mix of good and crap news, with a funny bit at the end. 

 

Status of the Inframammary Fold

Unfortunately, after I wrote my last BCD entry, the burns flared back up again during the week off the steroid. Now that I'm ending a week "on," it's much calmer.

 

I had my what has now become a monthly follow-up with Dr. Singh last Monday. The most significant change is that it took a few days longer than usual to break out into an itchy, painful rash in the burn area. Also, it wasn't as bad as the previous month, so I'm grateful for that. 

 

Dr. Singh said that it will be a few more months yet until this heals up, which means the week on/week off schedule will continue. I asked him what could be done about the flare ups during the week off. He prescribed Tacrolimus ointment. It's a different kind of drug than what I've used so far, an immunosuppressant. When the flare ups return, I'll give it a try. I return to see Dr. Singh toward the end of this month, hopefully, with good news. 

 

Ooph! and Genes 

The oophorectomy has now been scheduled for April 29th. I am very grateful for my dear friend Patty who volunteered right away to accompany me and take care of me after the surgery. 

 

The surgery itself may be subject to change if the results of the genetic testing leans in certain directions. I was interviewed by one of the Cancer Institute's genetic counselors, Sandra, on March 31. Prior to the interview, I had answered a LOT of family medical history questions (thanks to Mom for help there) and provided my own details. 

 

Based on all the information she was given, in addition to our interview, Sandra said they would not only cast a broad net of panel testing because I qualify, but also test for some pretty specific situations, such as the BRCA mutations, the CDKN2A gene, and a very scary Lynch Syndrome. While it's unlikely I'm positive for BRCA since no one in my family that I know of has breast cancer (and my beloved, late Aunt Elaine tested negative during her pancreatic cancer), the BRCA tests have become much more sensitive in the past few years. And, since I'm having my ovaries out, it's a bit of a non-issue if I am, especially since all my medical professionals will be on the lookout for breast cancer recurrence in the same and other breast. 

 

The CDKN2A gene raises the lifetime risk of having pancreatic cancer and melanoma. I've already had a melanoma removed from my left hand (right in the crease where the thumb meets the palm) back in my early 20s, which checks one box. I know, I'm a bit glib about these things now, but when I was having the conversation with Sandra, my guess is that my blood pressure wasn't my usual 117 over 70. 

 

Lynch Syndrome is particularly awful. According to Sandra, among other scary things, it raises the risk of colon cancer to 70-75%. Think colonoscopies annually rather than every 3 to 5. Here's the kicker, though, if I come up positive for Lynch Syndrome, I'd have a 50-60% chance of developing endometrial (think uterine) cancer. Sandra advised that I consider a hysterectomy rather than an oophorectomy, if Lynch Syndrome is positive. 

 

That's a whole other kettle of fish than an oophorectomy. I was knocked off my pins for a bit when I heard that. But, I'm back to practicing what Rose calls "Just-in-Time Worrying." I will worry if there's something to worry about. Otherwise, it's wasted energy and undesirable stress. 

 

All things considered, I'd rather know than not know. 

 

Perio News 

Back when Dr. Omene was talking about having me try Zometa (the osteoporosis drug that can cause necrosis of the jaw), I had made an appointment with my awesome periodontist Dr. Peter Cornick (if you ever need extensive dental/gum work, he's your guy). I hadn't seen him since 2017 since all has been well with me, periodontically speaking. 

 

I spent two hours in his office Thursday, which cost me a mint. His assistant took a full set of X-rays, looking more extensively at my jaw than my dentist typically does. Then, Dr. Cornick spent a good 40 minutes with me talking through the health of my teeth and taking measurements (think poking into the gums with a tiny pin). Finally, I had a deep cleaning. Even though things were in good shape, Dr. Cornick wants me to come 2x annually in addition to my biannual trips to the dentist. He's seen cancer therapies cause all manner of dental/oral shenanigans. 

 

I won't mind going to see Dr. Cornick because he's just the nicest person, and we talk skiing. However, it's going to add up very quickly because my dental insurance only covers 2 visits a year (and not all of that either). On the other hand, it's a lot less expensive than having dental work done (I met Dr. Cornick because I had to have a set of crowns replaced and an implant in the front of my mouth. It was a significant investment of money and time.) 

 

The Funny Bit at the End (well, Patty and I think it's funny) 

A number of years ago, I had a second surgery on my right foot. It didn't heal well, and subsequently predicts when it's going to rain (as does the migraine now taking up residence in the left side of my face as it's storming outside). Joining my menagerie of barometric predictors is Lefty. Yes, it's true. It took me a couple of weeks to figure it out because there has been premenstrual breast pain, intermittent surgical healing pain, and, of course, radiation pain. 

 

But, after keeping an even more detailed health journal than usual (however can that be, I just don't know), I have discovered that I have a weather boob. A boobrometer. I get the burning, stabbing pains through Lefty when the barometric pressure changes significantly. It does suck when it's happening. I won't deny it. However, I won't NOT laugh about the reason. 

 

Life is short, Friends. I've got to find the funny where I can. Best to laugh along with me. And, it's funny to say boobrometer. 

 

Thanks, as ever for all your kindness, support, prayers, love, and friendship. I always appreciate your positive feedback. I haven't put the wish list up in a while, but a friend asked for it, so here it is: https://www.amazon.com/hz/wishlist/ls/1F3HNL09N3G7C. For those who wish to support other organizations instead, the organization that provides my free breast cancer support group (which has been so helpful) is Hope Connections: https://hopeconnectionsforcancer.org/. 

 

Don't forget your screenings. Early detection is key.