9/24/20: Last Maintenance Herceptin! + Medical Oncologist Appointment

Today was my last infusion!!!!!

I am talking excitedly about it, but I'm not really sure how it feels yet. Maybe a little anticlimactic? Maybe a little scary? Or disorienting? It's a little weird to have a certain routine for a year, and then stop it suddenly. Of course, all the time not spent at the hospital is mine again, so that's good. 

Some hospitals do this thing where you ring a bell on your last day of treatment. It's a pretty big deal to a lot of people, and bell-ringing photos and videos regularly pop up in the Facebook support groups I'm in. But my Cancer Center doesn't have a bell, and I'm okay with that. I don't like being the center of attention, and I think I would feel self-conscious. But part of me does wonder if ringing the bell would provide a kind of closure, to help in the moving forward process. 

Anyway, I made chocolate lava cupcakes to celebrate. And Ken will be making paella for dinner. Yay!

Okay, back to my appointments today. The port nurse was behind schedule so the medical assistant took my vitals while I waited to get my port accessed. (For the last time!) 

My medical oncologist appointment went well, I think because I didn't have any open-ended concerns. 

I reported that my thumb and first 2 fingers on both hands are still numb and tingly, but now only very mildly so. Occasionally, for brief moments, my left hand even feels normal! Ever since my last appointment with my physical therapist, I've been doing only the prescribed stretches, and I haven't had any flare-ups of pain or discomfort. 

Thanks to the exemestane, the stiffness in my fingers has increased significantly so that I need to pump my fingers regularly throughout the day, to keep the rigidity at bay. It's a crazy feeling every morning, waking up to fingers that won't bend, and having to slowly work my fingers until the mobility returns. 

My left hand still looks puffy to me. Shoes that used to feel loose now feel snug, and my old watch is tight on my wrist. Even my face looks a little puffy to me, so either I've gained weight all around, or I'm retaining fluid. Either way, I think I can blame the Lupron.

Also because of the Lupron, I still get hot flashes, but not nearly as frequently as before. I used to get them at least several to many times a day, but now it's more like 0-2 times a day. I don't know if the side effect is wearing off, or if the cooler weather and colder household temperature are a factor. 

As suggested by my PCP, I asked about getting a colonoscopy before age 50. Contrary to what I found online, she said I don't have an increased risk of colon cancer due to breast cancer. Interestingly, however, several organizations, including the American Cancer Society, have recently changed their recommendations to say that even people with an average risk of colon cancer should get screened at age 45. Apparently there are many types of screening besides colonoscopy, but a colonoscopy is the most thorough option. I'm 44 now, and I'll be 45 by the next time I see my PCP, so I guess I'll go ahead and ask for some type of screening and see what my PCP suggests.

My oncologist was very nice and excitedly congratulated me on finishing Herceptin. No hugs because of COVID-19 but I think if we weren't in pandemic it would have been a hugging moment.

Up in the infusion room, I saw the "new" nurse that my regular nurse had trained. I had to wait a long time for the Herceptin to be delivered from the pharmacy, but that's not a complaint, I didn't mind just sitting and reading my book. 

When everything was finished, I wanted to say it felt great, but I didn't really feel much at the time. The nurse de-accessed my port, and then confirmed my upcoming appointments, including next week's Lupron shot. I guess that's part of why I don't really have a sense of completion; I'll be back again next week, and every 4 weeks after that, until menopause or until I opt for an oophorectomy, whichever comes first. 

7/15/20: PCP Appointment (Annual Physical)

Today's visit was kind of weird with all the coronavirus precautions; they were much more extensive than at the Cancer Center. I think they did a really good job, but could work on their coordination a bit.

This was my first time seeing my PCP since being diagnosed, and I guess sort of hoped for more personal attention. Not necessarily sympathy, but she did not ask me about my cancer treatment or mental health at all. Everything felt perfunctory and rushed, like she was just trying to get patients in and out as fast as possible; that would explain the physical exam part of the visit, but even the phone call portion felt hurried.

The medical history part of the exam was done over the phone, while I sat in my car in the parking lot in front of the medical office. By now, I've had a couple virtual appointments for my kids and myself, and each time, the provider called at exactly the scheduled time. Today, my PCP called over 10 minutes early. I was still driving, so I didn't pick up, and she called back every 1-2 minutes. Once parked, I answered her 3rd call, which was still well before the 8:40 start time.

First, she went over medications and allergies. She started out by confirming that I have no allergies, but I quickly corrected her and told her about the chlorhexidine. This oversight annoyed me because 2 days ago, the provider's office texted me with an online form to update my medical history; I spent 10-15 minutes entering in all my information, including the chlorhexidine allergy. Apparently, all that effort was for nothing, because she also did not know about my updated medication list.

I asked for her thoughts on whether or not I should get my ovaries removed. She gave me some general advice about weighing risks and benefits, and also talked about osteoporosis being a serious risk. Then she said that if it were her, personally, she would get the surgery, figuring the benefit of reducing ovarian cancer would outweigh the risk of osteoporosis. I did mention that my risk of ovarian cancer is still unknown, and that the genetic specialist said that VUS-es should not drive medical decisions, but she seemed to be in the "a VUS could just as well indicate a higher risk of ovarian cancer as not" camp. I also described the possible medical risks, and she suggested talking with a gynecologic oncologist, who would be more knowledgeable about up-to-date research. It's a good idea, and I'll keep it in mind.

I also thought it would be prudent to let her know what's going on with my hands. She readily attributed my symptoms to medication side effects. When I told her that my medical oncologist and physical therapist are recommending an MRI, she suggested I see a neurologist.

She also told me to be sure to ask my oncologist if I should get a colonoscopy before age 50. Other than the gynecological cancers related to my genetic testing, I hadn't given any thought at all to other second cancers. I'll be sure to add it to my list of questions for my next medical oncology appointment.

Finally, my PCP asked a physician's assistant student who was also on the line whether or not there was anything we forgot. The student pointed out that we hadn't talked about mammograms. I immediately thought of the many posts I've seen on Facebook support groups from women who are now flat feeling upset or angry when their doctors reminded them to get mammograms. I'm glad I had a heads-up to expect this kind of thing. Given the apparent lack of updated information in my medical file - or the lack of attention given to information in my file - I wasn't surprised when it happened. In fact, I think I was bemused! I calmly explained that I don't need mammograms anymore because I had gotten a double mastectomy with no reconstruction. I'm sure if I were the student, I'd have been mortified, so I tried to be nice about it.

Before hanging up, my PCP told me to put on my mask and wait at the main entrance for someone to let me in. Someone had called while I was on the phone with the doctor, so while waiting to go in, I checked my messages. Oddly, it was a rather impatient person calling from the lab, saying, "You can come on in, and you better hurry, it's already 8:45 and I have another patient at 9:00." Shouldn't the doctor and the lab technician have coordinated?

A medical assistant walked me from the main entrance directly to the exam room. The waiting room was not in use, and the medical assistant opened all doors, so I didn't have to touch them. She took my vitals, and I barely had time to change into the gown when the doctor knocked to come in. She apologized for all the hassle, but I said it was great, they are clearly taking all possible precautions. I told her about the message I received from the lab, thinking it could help them to improve their services, but all she said was, "I don't know anything about that." Oh, well!

She gave me a quick physical and was in and out in a matter of minutes. Instead of going to the lab to get my blood drawn, the lab technician came to the exam room. I don't know if it was the same person who called, but the person who drew my blood was perfectly friendly. Afterwards, the medical assistant came back to escort me out of the building using a different exit than the main entrance I used coming in.

A few hours later, I got a phone call to schedule an appointment with a neurologist; they were following up on a referral from my PCP. I told them I'm not ready to make an appointment yet, but I got the doctor's name and phone number, for future reference. I figure I'll see how things go with the MRI first.