A New Chapter in Many Ways
It took me about a month since the last BCD to come to terms with the emotional load I've been chewing on since the last meeting with Dr. Omene. [Quick recap: I can't tolerate the medications to prevent a cancer recurrence. One also happens to be what they give to women with my kind of breast cancer that becomes metastatic. Given my reactions to medications, I likely won't be able to tolerate chemo, either. So, if metastasis occurs, I'm f*©ked.] Although, while I'm clear about the possibility of a ticking clock, I have come to espouse the following view, expressed in questions: "What if it works out alright? What if I don't have a recurrence?"
It's a bit of a take off on Rose's "just in time worrying" practice, meaning worrying when there's actually something to worry about. In short, I'm making a decision not to live in the probability of metastasis, instead preferring to LIVE MY LIFE. Yup, live it in capital letters, my friends and family.
Don't get me wrong, as I've been working my way through this emotional journey there have been moments that were unexpected and knocked me off my pins for a day or so. Some songs hit me a completely different way now. Recently, I was exercising on the treadmill, listening to one of my favorite artists, Neko Case. She sang a cover of the Harry Nilsson song "Don't Forget Me." Now, this wasn't the first time I've cried to that song. It used to wreck me during and immediately after the divorce. This time, when I heard the line about being old and full of cancer, I lost it. Wept all over the treadmill. Makes me a bit tender just writing about it now.
I could go on about songs, but I'll just share on one more and move forward. On one of my recent walks in the park, I was listening to U2's album All That You Can't Leave Behind. After 9-11, I had it on constantly. This time, when I heard the song "Walk On," it made me profoundly sad (look up the lyrics). Afterward, I had the epiphany that I needed to stop living as if recurrence was a foregone conclusion. Sure, it's likely because I had 1 positive node (and cancer seems to get all of us sooner or later). But I really needed to shake off this way of thinking otherwise I wouldn't be able to live the life I do have to the fullest.
Which doesn't mean that I put all the health stuff aside. I won't and haven't. But much more on that below.
Starting Ongoing Surveillance
Dr. Gwozdz, my primary care guy, ordered all kinds of tests to set a baseline for my post-treatment surveillance. Nearly all of the results were normal, and the 3 that weren't were just outside of the normal ranges. So, he's not concerned about any of it. We'll test again in another 6 months.
All the Updates
Left Breast and Arm Lymphedema and Right Hand Physical Therapy
Two weeks ago, Manasee discharged me from the lymphedema drainage massage treatment. We had gotten to the point of my knowing what to do (wear compression garments, do my 2x daily exercises and massage, and protect my left arm, hand, and breast from any injury) and being able to do it with results when able. She is confident that I'll be able to increase lifting to 5-8 lbs, but not more, which makes me a bit sad. However, I accept it because I now know what happens when I lift too much.
I had a small flood in my kitchen and tried to flatten my laminate floor before it curled up badly. With my friend Jim's help, I took all the heavy things I own (mostly books, bottled water, pavers, etc.) and placed them on wood on top of the floor. When it became clear that it wasn't going to help, I didn't wait for Jim, and instead carried all the heavy stuff back to whence it came. The next day, I experienced such profound breast pain and swelling that I was down for a whole day. It took a week to fully recover. You can bet that I won't be doing that again.
What remains is the daily balance between compression and burn care (more on that later).
I've also been working with Lisa the fitter to get set up with more compression bras. There has been a bit of an issue with her external biller saying that they won't file because insurance won't cover them. Turns out, insurance (or at least Cigna) does cover them with the correct codes. I had to call Cigna and go through a bit of a rigamarole there, but they said they would cover them. It's a good thing, too, because I'll need at least 8 of these per year (yes, I do hand wash them and baby them to make them last as long as possible). They cost at least $70 a piece, depending on the model. I'm awaiting a few reimbursement checks.
Speaking of insurance, my oncology nurse navigator Becca has discharged me. If I need her, I can always call, but since I'm no longer being treated actively, she must close her services. I'll miss her monthly calls. She will help me in November, though, when it comes to requesting ongoing insurance because the divorce COBRA ends in December.
For the arm/hand compression, I've been having a very positive experience with the pros at Luna Medical. Amazingly, my insurance covers 8 gloves and sleeves per year (I don't generally need the gloves except when exercising, but Manasee is concerned with possible swelling.). Luna hipped me to some very cool designs by Juzo that fit me better than the Lymphedivas sleeves. They are pretty comfortable and helpful. I wear them for at least 4 hours a day at home, especially when I exercise, and any time I leave the house (I also wear a silicone bracelet that says "No needles or BP in this arm." People have been really complimentary about them.
The week following my lymphedema discharge, I began physical therapy for the damage done to my hand thanks to the blood draw in the RWJ emergency room. I've had all kinds of nerve testing and x-rays and none show any permanent damage, except mild carpal tunnel. My hand specialist, Liz Henriquez, thinks it is likely soft tissue damage from the blood draw that's causing the tingling and numbness in my hand when I do most things.
Liz gave me a handful of exercises to do. She also looked at photos I'd taken of my home office set up and the wrist splints I've been wearing. Turns out, I had to get a different splint. She also said that she doesn't expect me to get 100% better. Hoping for 60% is what we're aiming for now. That also makes me sad, but at least I know what life is going to be like for my right hand moving forward. I'll be meeting with her 2x weekly for the next few months.
The Inframammary Fold
Three weeks ago, Dr. Singh took a look at the continuing flare up. I mentioned that Dr. Omene thought there might be a fungal infection. Although he said he saw no sign of one, he gave me another steroid to try that comes with an antifungal: clotrimazole/betameth cream. He also said that if doesn't improve significantly by the next time I see him (at the end of this month), he will take a biopsy. I dread the thought of the lymphedema hell that's going to unleash, but this has been going on for long enough to take a sample of the skin.
Like all the steroids I've used, they turn the affected area much redder. I used it for two weeks, and the burn area did improve. As per usual with all of these treatments, when I switched back to tacrolimus, I underwent a painful peel.
I've also begun to use cornstarch baby powder in the area (after cleaning first) prior to putting on a jog bra for exercise. So far, that hasn't been a problem (with the exception of some minor peeling on occasion). I'm going to try using it more frequently in an effort to use tacrolimus less often.
All the Rest
I met with Dr. Rihacek, the rheumatologist, last month. He also sent me for all kinds of tests and x-rays. I'll meet with him at the end of this month to talk about the outcomes. But Dr. Gwozdz look at the blood tests and explained a few things I had questions about.
My next doctor's appointment is with the awesome Dr. Goldstein, my gastroenterologist. I'm overdue for a colonoscopy (a little cancer got in the way), and I'm sure she'll want an update on all the cancer business. Other than physical therapy, it will be nice to get through a few weeks without medical attention.
I return to work in person (on a limited basis) next week, and I'm excited and a little anxious about it. I'm going to need help lifting heavy things, and that will need to be worked out. I'm looking forward to the hands-on work, as well as seeing folks in person once again.
Last, but not least, I will take my first vacation in a long while. I will head north and west to visit my very dear friend Jane in Erie, PA. There will be stops at a couple of gluten-free shops on the way.
As ever, I am grateful for your continued reading of these diary entries. Thanks especially to those who have sent love, prayers, hugs, very silly gifts, very timely gifts, and shared their own experience.
Don't forget to get your screenings. Early detection is key!
