The End of the Line for Now, and Other Updates
Yesterday, Monday Aug. 1st, was a tough one. I met with my oncologist to talk about what's next.
Intellectually knowing that I'm out of options as far as medicines go is a bit different than being there in the moment and hearing "Now, we focus on monitoring for changes, signs, and symptoms." It felt a bit odd because I had expected that Dr. Omene might try to sell me trying on another aromatase inhibitor. She did not. In fact, she said that, with my sensitivities, I would likely experience side effects from the medications that she would give me to treat the AI side effects.
She won't be the one doing the monitoring, although the results will be shared with her every 6 months (or sooner, if there's something abnormal). Instead, I'll visit my primary care physician more frequently to order blood tests, monitor all manner of vitals, and generally have him pay close attention to even subtle changes. I have an appointment with him in two days to kick off this regimen.
There also will be the 6-month interval mammogram nightmare. Since my recent mammogram 2 weeks ago, I've had a really bad burn flare up and lymphedema swelling in the left breast. I've also developed a rash in the inframmamary fold that I'm having Dr. Singh take a look at tomorrow. It's very red, inflamed, painful and itchy.
Consequently, physical therapy for the lymphedema in the breast is difficult for Manassee to do. We're moving away from every week to every other week because we know what works. Unfortunately, while I'm this inflamed from the burns, very little progress can be made because inflammation leads to swelling and pain. It all depends on healing the burns.
But back to the oncology...
After I left Dr. Omene at the Cancer Institute, I felt a range of different feelings. There was relief about not having to defend my choices, but at the same time, I realized that we had exhaused the choices that might help prevent future recurrences. It's not a given that just because someone takes one of these hormone blockers they won't have a recurrence/metastasis. From spending time in breast cancer support groups (including one for those of us with lymphedema), there's an unfortunately high number of people who talk about their metastatic breast cancer after having taken AIs, as well as tamoxifen (whether with chemo or without, mastectomy or lumpectomy).
Regardless of my good prognosis, because I had 1 positive node, some cancer traveled outside the breast. It's difficult not to think about that as a ticking clock.
However, after I finished work, I reached out to a couple of very close friends and one of my dear BC sisters to talk through my feelings and cry about it a bit. Today, I'm in a state of acceptance. I've put away the ticking clock for the time being, mainly because no one knows what the future brings.
There is a whole lot of research underway in the field of breast cancer recurrence treatment, and hopefully, someday soon, one I can tolerate will be developed. Dr. Omene said that it was a good thing that I had my ovaries removed. That will greatly lessen the amount of estrogen to tempt any errant IDC cells that escaped the surgery and radiation.
Otherwise, I've been walking nearly every day for an hour, whether outdoors (if it's cool enough in the early morning) or on the treadmill downstairs. Manasee gave me more excercises to do, and in addition to doing those twice daily, I have been exercising with the yoga ball and lifting 2 lb weights. Now that I've got my lymphedema sleeves and gloves for my left arm, I can start back up with home yoga again. Although, I've been warned to take it slow (as with everything, it seems).
I wear the sleeves daily, but do not sleep in them. They come in some pretty cool designs. I tried Lymphedivas, because they have so many great designs, but found that the top band tends to roll down. Lisa, my fitter (for compression bras and sleeves/gloves) ordered me some Juzo sleeves. They are more comfortable and never roll down.
Luna Medical is in network for my insurance provider, and they had many more fun designs and colors for the Juzo sleeves. Since I met my deductible early, I'll be set for sleeves for a while. These medical devices have a lifespan of about 6 months. I'll have a few of them to rotate in use to try to stretch the life of them longer.
Later this week, I'll go back to Lisa for more compression bra fitting.
Lastly, I have mapped out what my return to campus (partially) will look like for the month of September. The plan is to be in the archive two days a week, 4 hours each day. I will start later (at 10) to accommodate all the extra exercises, lymphatic massage, and radiation burn care that must be done in the mornings. I'm really looking forward to being among my colleagues again, but at the same time, I have some anxiety about folks not masking. I'll be wearing my KN 95.
Thanks, as ever, to everyone who
takes the time to comment on these posts. It means a lot to me that you
do. Thanks also for all the kind words, thoughts, prayers, good vibes,
funny jokes, love, and gifts. I appreciate all of it.
Don't forget to schedule your screenings. Early detection is key.
