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. 

9/9/20: The Hospital Called Me

My port removal is scheduled for October 1!

At first it was scheduled for September 25. I asked if it's possible to know which doctor I would be seeing, and the scheduler said no, there are multiple doctors on duty. She asked if I had a request to see a particular doctor, and I explained how I actually have a request to NOT see a particular doctor. She said this doctor is scheduled to work that day, but she could put in a note for me to see someone else. That seemed like it had the potential to get awkward, so I asked if I could be scheduled on a day that this doctor isn't even working. 

Now I just have to hope that the procedure goes well, and the final incision heals cleanly. I have some anxiety over the possibility of having another poor outcome, and I keep trying to tell myself that beyond asking for a new doctor, there's nothing more I can do about it. It's out of my hands. 

I know I should try to focus on the good news, which is that my infusions will soon be ending! But part of me is not sure how to feel about that. Yes, it's something to celebrate for sure. It will be nice to not have an appointment every 3 weeks! But it also feels kind of weird. After more than a year of active treatment, I'll have to settle back into some sort of normal life.

I think a lot about this meme, which I posted before at the start of my treatment. It seems like there should be a sense of empowerment and completion, but what I'm feeling is more like disorientation, and helplessness.  

Practically speaking, I am looking forward to being off Herceptin because I'm hoping it will lead to an improvement in the numbness and tingling in my fingers and toes. Or if not, at least I'll be able to eliminate one possible cause for those symptoms. 

Maybe I don't feel that sense of completion because even though I can check off surgery, chemotherapy, and targeted therapy, the hormone therapy part of my treatment is still on-going. 

Well, maybe I just shouldn't think about it too much. I don't need to be spending time analyzing myself when there's plenty of other things for me to think about, e.g, the kids starting school, the pandemic, the upcoming election!

9/4/20: (8.5 Months Post-Chemo) No More Hats!

For the first time since last November, I went out today without a hat!!

It felt amazing. I really felt just a little more like myself. 

I interacted with 5 people at my appointment today, and 3 out of 5 noticed and complimented my hair. Of course they will say something positive whether it looks good or not, but it just felt really great to be one step closer to having chemo behind me. 

My last chemo was December 20, so apparently it took over 8 months for my hair to grow long enough just to be held in place by a headband. Even now, without the headband, my hair pretty much sticks straight out. I am grateful, of course, that it is coming in thick and black!

The headband in the photo has pink flowers, it's my daughter's and not exactly my style. It fits well and stays in place, so I went ahead and ordered a few more simple headbands from the same business.

Yay!!

9/4/20: Maintenance Herceptin #13 + Lupron

After today, only 1 more Herceptin to go!!!!

It was a pretty routine visit. The port nurse accessed my port, the medical assistant took my vitals, I got my Herceptin, and then the Lupron. 

My usual nurse wasn't there, but the nurse I saw was one I've had before. I told her how the hospital had called to schedule my port removal, but I wanted to have the procedure done at the main hospital in the city, and no one has called to schedule that yet. She said she'd email the nurse coordinator about it. (Back at home after the appointment, the nurse coordinator called to say she put in the request, and I should expect a call within a week.)

After the Herceptin, another nurse I've had before finished the appointment with me. She de-accessed my port and gave me the Lupron shot. I like both nurses, but I was happy with the switcheroo because the second nurse always does an especially good job with the shot. It's virtually painless! She says it's because she takes care to do the injection slowly. 

9/2/20: I Checked My Insurance Claims Online

Our insurance coverage year starts in July, so we paid the full deductible on the first appointment in the new coverage year. After that, insurance paid all claims in full. I will never change my mind: everybody deserves to receive medical treatment free from financial worry and stress. 

5/20/20: Medical Oncologist Appointment: $368

7/2/20: Maintenance Herceptin #10: $15,122.75, I paid $4,000

7/9/20: Physical Therapy Virtual Appointment #20: $372

7/10/20: Lupron: $571.16
7/24/20: Maintenance Herceptin #11 (Including Medical Oncology NP Appointment): $16,468.75
7/27/20: Echocardiogram Cardiologist: $243

7/27/20: Echocardiogram Hospital: $1,133

7/30/20: Physical Therapy Appointment #21: $348 

8/6/20: Cardio-Oncology Appointment: $288

8/6/20: Cardio-Oncology Hospital: $227

8/7/20: Lupron: $571.16

8/14/20: Maintenance Herceptin #12: $14,750.21

Total cost to date: $374,748.18
With insurance, cost to me: $8,254.63

9/2/20: I Guess I Don't Need Referrals Anymore?

According to my meticulously kept records, the referral for my medical oncologist expires today. I called my PCP's referral line to get a new referral for my new doctor. Surprisingly, they said a referral isn't needed because the specialist is in the same hospital network as my PCP. 

I asked if this is a new policy, and they said it's been in effect since at least February. I actually noticed that the referral I requested for my cardio-oncologist in August was not showing up in the online patient portal; they confirmed that they have a record of the request, and that a referral wasn't needed because the cardiologist is in the same hospital network. My online patient portal does show a new referral for my breast surgeon in June, and for my genetic counselor in July; they are both in the same hospital network, too, so now I don't understand why those went through, but I guess it doesn't matter, as long as my insurance covers the appointments.