Friday, June 8, 2018
Today, I am 4 weeks post-op and it’s Herceptin day. I get to see the oncologist this time. Since starting Herceptin on its own, I only get to see her every other infusion appointment. This week, I will also meet with the genetic counselor. This appointment showed up out of the blue, but I want to hear what they have to say.
I noticed on Monday that my eyebrows are actually starting to grow back. I was concerned because what was left of my eyebrows had fallen out the week before and I had nothing there. Now, it just looks dirty above my eyes. LOL.
My eyelashes are maybe 1/8″ long now. I can almost wear mascara again. The discoloration on my breasts is ever changing. The spot on my incision is still working on healing and growing new skin. The swelling is still there, but comes and goes now rather than just being and feeling 2-3 times normal size all the time. I am noticing the inklings of feeling coming back in my left nipple. Oh, and while I’m on that topic. The only sensation I’m noticing on either side so far is pain. It feels like my skin’s been pinched for too long. There is still a lot of numbness in both armpits. My ability to reach on either side comes and goes with the swelling. I’ve discovered that wearing the Victoria’s Secret bras is a bad thing for now – the wires rest on the incisions which makes my sides hurt, they squish the girls together, which also doesn’t feel all that great, and the double coverage gets them too warm, which causes more swelling, and then more pain. I’ve got one “recovery” bra that I’m wearing, and I found some front-closing sports bras at Jockey. I was able to take the padding out of them, and they’re comfortable enough that I can alternate them with the surgical and recovery bras and not have a problem.
The numbness in my fingertips is mostly gone now. I have a couple of small spots there left. My feet are mostly still numb. I have days that they feel good and like it’s finally going to go away, and then it comes back the next day. I do know that some of the neuropathy gets better when I’m able to have massages on my legs and low back. I’m looking forward to being able to lay on a massage table again sometime in the next few weeks.
I had a speech therapy appointment on Wednesday. Tuesday night was one of those sleepless nights, so I went to the appointment on about 2-1/2 hours of sleep. By the time I got home and thought about taking a nap, I was overtired and couldn’t sleep. I was in bed around 8:00 pm. The next day, I was tired all day and was having all kinds of memory issues. I went to bed early-ish again because I had to be up early to be on the road downtown for my Herceptin appointment. I expect to be tired when I get home today.
Herceptin Infusion / Oncologist Visit
I have a long list of things to discuss with the oncologist. There was a meeting of the Tumor Board after my surgery and the meeting minutes were posted in the portal. I had read through them and there was a recommendation that in addition to Herceptin, we add Perjeta back in and also consider another drug called Neratinib. I also raised the new information published from a few new studies this week. The one I was most interested in stated that 6 months of Herceptin yields the same result as a year. We discussed the standard of care and things will stay the same for me. I have 7 months of Herceptin left, because the margins were wide enough and the surgeon got all the cancer, neither of us felt that adding Perjeta back was going to help anything. The Neratinib has a list of more significant side effects than the Herceptin, and so while it is part of the Tumor Board recommendation, she wasn’t ready to add it to my regimen or switch me to it because those side effects were worse. I agreed.
I had found in the last week or two that I felt like the neuropathy was getting better, and then it would be back again a day later. She said this is normal and the fact that it’s waxing and waning is a good sign.
This past week, I’ve noticed more pain when I am eating on my right side. When I was at the dentist for a checkup last November, they told me that the crown on my upper right molar had a gap and we’d need to watch it. I had wanted it replaced at the time, but no one else thought that was a good idea. Now that I’m 7 weeks post-chemo, I let her know that it’s time to get the crown done. We decide that I should take a full day’s dose of the antibiotic that I’d gotten from the surgeon rather than add another new prescription the morning of the procedure to help prevent infection.
I mentioned that past couple of weeks have been weird for sleeping and eating. Some nights I can get to sleep but wake up too early, and some nights I just can’t get to sleep and end up napping in my chair for 4 or 5 hours at a shot. This has been one of those weeks. I’m also having problems with appetite. I’m not really hungry, and when I am, nothing sounds (or tastes) good. I’ve lost 10 pounds since my last infusion appointment. Part of this is because I’m walking/exercising more. Something to keep an eye on.
The Oncologist asked if I’d heard from the Radiation Oncologist yet. When I said no, she sent her a message and asked if we could get going on radiation appointments. I have a 2 hour appointment scheduled with her next Friday. This is the part that gives me the most fear and the part that I want done and over with the most.
The genetic counselor looks at family history and determines if there is enough relatable or high incidence cancer in the family to warrant additional screenings. For me, relatable cancers would be other relatives with breast cancer, ovarian cancer, and bone cancers. I have a few relatives with breast cancer that they are saying are likely not close enough relatives to be considered hereditary. Because my cancer and the next closest to me kind of popped up out of the blue, I opt for the genetic testing to see what other cancers I have a propensity to get and start planning those additional screenings. This test looks at 34 genes that would mean a higher likelihood of additional cancer. The results will be back in 3-4 weeks.
Treatment from Professionals
I’ve been having some issues with one of my nurses dismissing symptoms and side effects for a while now. Last week, after my drain was removed, I’d stopped by to check on something else and she was making light of my chemo brain issue again. I’d found a blog post from an oncology RN (Lindsay Norris) who had contracted cancer. Lindsay’s post was directed to the patients she’d taken care of before her cancer. I needed my nurse to understand that even though she thought she understood what I had and was going through, she really didn’t.
If you’re in healthcare, when you’re joking about known symptoms from chemo or other drugs, there are some patients won’t be honest with you about what’s going on because they expect it’s all “normal,” or they think it’s just them, or the way it’s supposed to be just because you turned their concern into a joke. Too many people are taking cancer lying down because they think they have to.
Somebody said the other day that they’ve watched me take this on and wrap my arms around it, and that I’ve taken it all in stride. That’s true. I have. And yes, some things are what they are, but there are a handful of things, like chemo brain and neuropathy that just aren’t. I’m not giving in for either of those. What I can’t, and won’t tolerate is not being told about the known side effects from these drugs. It is known that chemo affects the brain regardless of cancer type. I was warned about the neuropathy because they didn’t want it to become a permanent condition. I was not warned about chemo brain, which has taken the very thing that makes me who I am. My brain.
Nurses or other healthcare professionals that make light of or dismiss symptoms are the reason that patients don’t report side effects like chemo brain. As a result, researchers haven’t known that they needed to be working to solve this problem. It’s time we are treated like people with lives and feelings instead of voiceless clinical trial mice.