6/15/26: Medical Oncologist Appointment

Today I had my annual oncology follow-up. My appointments are supposed to alternate between the medical oncologist and medical oncology NP, but for some reason, I was scheduled with the NP for 3 years in a row, so I hadn't seen my oncologist since 2022!

I first got a blood draw for a full panel of tests. I was a little surprised because I couldn't even remember the last time I had my blood drawn for an oncology appointment. At home later, I checked my records, and it was back in 2022 when I last saw my oncologist! Anyway, today I had to go to the phlebotomy department in the main part of the hospital; since my last blood draw, the small dedicated phlebotomy lab in the cancer center is now only used for limited purposes.

The very nice medical assistant who took my vitals gave me another surprise when she said my height is 5' 5". I thought I was 5' 5.5"! Again, I checked my records at home, and last year I was 5' 5.25". At the time, I probably chalked it up to a slight mismeasurement, but I can't ignore two years of declining measurements in a row. Yikes. Surely bone loss is to blame; more on that later.

The medical assistant also told me the doctor was running behind schedule, and indeed by the time I was shown to an exam room, it was 50 minutes past my scheduled appointment time. Then I had to wait at least another 15 minutes for my oncologist. But I didn't mind, I didn't have any other place to be. The way I see it, my appointments are relatively routine now, and other cancer patients probably need her attention a lot more than I do. Plus, I like the idea of a doctor spending as much time as necessary with a patient. I used the time to start this blog post, check email, etc.

While waiting in the exam room, with the door open, my medical oncology NP walked by and popped in to say hello. It was very quick but also very friendly, just enough time for her to ask about my kids and for me to tell her about my youngest graduating high school and heading off to college. When I finally saw my doctor, she was so pleasant and kind and spent maybe a good 30 minutes with me. I didn't feel rushed at all.

I was surprised - again! - when the doctor asked about my eye appointments; I didn't realize she would have access to the fact that I recently got an eye exam and was referred to an ophthalmologist for an "enlarged optic nerve". I super appreciate when all my doctors in the same giant hospital network can see each other's notes, but I know the ophthalmologist is not in that network. Maybe my oncologist just saw the referral from my PCP, who is in the same network? Who knows. However she got to see it, I do like the convenience and comprehensiveness of all my doctors being able to see my medical activity across specialties.

We talked about my various symptoms and side effects from menopause and hormone therapy, e.g., joint stiffness, neuropathy in fingers and toes, hot flashes (much reduced from initial frequency), vaginal dryness, and increased anxiety. I told her about the new neuropathy in my left toe, though at this point, I've pretty much just accepted that all the discomforts are part and parcel of having had cancer.   

My oncologist confirmed that it'd be difficult to separate which symptoms are from menopause, and which might be side effects of taking anastrozole, the difference being that side effects could potentially improve when I stop hormone therapy. (I've got 4 more years to go, for a total of 10 years of hormone therapy.) Anastrozole is an aromatase inhibitor, and she said there is one more medication in the same family that I could try, called letrozole. I previously took exemestane, and got switched to anastrozole to see if I'd have fewer side effects on it, which I did. My doctor said I could try switching to letrozole, if I want, just to see if side effects are even better, but I guess I sort of feel like I'm in a steady routine now, so I'm loath to rock the boat by switching medications. It's good to know it's an option though. 

As usual, I had a physical exam as well, which went fine.  

Finally, I am due for a bone density test (because aromatase inhibitors cause bone loss), so will call tomorrow to schedule that. My oncologist said to try to get an appointment before my next PCP appointment, so my PCP can see the results and talk with me about whether or not to start treating my osteopenia (which hopefully has not progressed to osteoporosis).

2/13/26: Neuropathy in Left Pinky Toe

This past Sunday, the "feels like my sock is wet, but it's not" type neuropathy has randomly returned, but this time it's in my left pinky toe. 

As a reminder, this previously happened in the last 2 toes on my right foot, and all my medical providers figured it was related to body positioning as I recovered from surgery. Eventually I stumbled upon leg stretches that helped, and the "wet sock" neuropathy went away, but a "subdued sensation" feeling remains to this day, very similar to the neuropathy I have in the first 3 fingers of both hands, which I've had since chemo.

This time, I haven't had any recent surgery to be recovering from, so we can't blame it on that. 

The only thing I can think of that might be noteworthy is that recently I had a full week that was very stressful and tiring - both physically and mentally. Without getting into the details, suffice to say it was go-go-go with one thing after another. Once I finally had a chance to catch my breath, I was bewildered at how continually tired I was for the whole following week; I was sleeping a lot but kept feeling like I hadn't slept enough.

It wasn't until last weekend that I seemed to have crossed a hurdle and my energy level felt back to baseline, only it coincided with the start of that "wet sock" feeling. Maybe all that sleeping pinched a nerve somewhere?!

Anyway, by Monday I remembered that leg stretches seemed to help the last time I had this weird toe neuropathy, so I've started doing them again. I think they're helping because the "wet sock" feeling is mostly gone, but the "subdued sensation" feeling is still there. Very depressing to think I may end up with yet another site of persistent, potentially chronic neuropathy.

9/9/25: I Got a Pfizer Updated Covid Vaccine

Two days ago (on Sunday) I got the updated 2025-2026 covid vaccine. It happened to be Pfizer. 

I had thought about trying to get Novavax this year, since I had better luck with it in regards to side effects, but given the chaos and confusion created by anti-vaxxer RFK Jr. and his fellow anti-vaxxer cronies, I decided it would be best to get whatever vaccine I can, as soon as I can, in case vaccine access actually gets worse under this administration.

Here in MA, due to state laws, originally even pharmacies weren't able to administer the new covid vaccine, though CVS Minute Clinics could, because they are governed by the state Department of Public Health, not the state pharmacy board. (PCPs are always authorized to give covid vaccines, but in recent years, my PCP's office has directed patients to commercial pharmacies.)

I went ahead and scheduled an appointment for myself, my husband, and my son at the closest CVS Minute Clinic. In order to be eligible according to the FDA's new politically motivated restrictions, I had to attest that we all have a high-risk condition. My husband legitimately qualifies, and I had no qualms clicking "yes" because my cardiologist said I qualify. I felt a little weird clicking "yes" for my son - because I'm generally a rule-follower - but with the American Academy of Pediatrics saying that any kid whose parents want them to get vaccinated should be vaccinated, and with widespread encouragement for people to get vaccinated any way they can, I ultimately felt justified. 

Luckily, the issue became moot because, as it turned out, the same day I made our appointments, MA Governor Maura Healey issued an order allowing pharmacies to administer the covid vaccine and also making all people over age 5 eligible despite federal restrictions! I'm so relieved, thankful, and proud to live in MA!! 

(My daughter got covid in August, so we're following recommendations - which are still based on science - to wait 3 months, and we'll just have to hope the covid vaccines will still be accessible in November.)

Anyway. So I got the shot Sunday morning at a CVS Minute Clinic. Almost immediately the area around the shot started to feel sore and achy. Before we even left the store, the achiness had spread through my left shoulder just up to my neck. I went about my day as usual. By mid-afternoon, my entire left arm down to my wrist felt heavy, and my upper arm was painful if touched. By early evening, I felt wicked tired. None of this was particularly surprising, as I tend to get a lot of side effects from mRNA vaccines. 

Overnight, my whole body got achy, and I slept very poorly. All day yesterday, I felt lethargic, moved sluggishly, and my upper left arm hurt even when not touched. I cancelled plans to go grocery shopping, spent the day in bed with a small headache and low-grade fever, and made sure to stay hydrated. 

Today, after a full night's sleep, I'm mostly recovered. The only remaining side effect is that my upper left arm still hurts a bit.

Incidentally, both my husband and son only had a bit of upper arm soreness at the injection site, no other side effects. 

8/29/25: Cost Update

By the time I had my annual oncology and cardiology appointments in June, at the tail end of our July-to-June insurance coverage year, we'd finally met our deductible, which means those appointments were fully covered. 

The only other cancer-related medical charges I had were for anastrozole, which thankfully is always fully covered. 

So for this update, I'm only listing the amount billed / retail price (which gets added to the "total cost"), since the cost to me was $0.

10/24/24: Anastrozole (generic): $545.99 
1/22/25: Anastrozole (generic): $545.99
4/18/25: Anastrozole (generic): $545.99
6/5/25: Medical Oncology NP Appointment: $273.00
6/5/25: Medical Oncology NP Hospital: $181.00
6/24/25: Cardiologist Appointment + EKG: $353.00
6/24/25: Cardiologist Hospital + EKG: $504.00 
7/19/25: Anastrozole (generic): $545.99

Total cost to date: $481,186.34
With insurance, cost to me: $16,908.63

6/24/25: Cardiology Appointment

Not too much to report for this appointment. 

I've been abbreviating "electrocardiogram" as "EKG", but "ECG" is equally common.

So, the cardiologist said my EKG still shows the same "non-specific" abnormalities as before, but she has no idea why. Her online notes say, "Compared with ECG 6/25/2024, STT changes less prominent." Given the results of my most recent stress test and echocardiogram, and the fact that I don't report any cardiovascular symptoms (like shortness of breath, dizziness, or fatigue), the doctor didn't seem worried at all. But she did say I should continue to get a yearly EKG for monitoring purposes. 

She also said my next echocardiogram can be in 5 years from my last one, so in 2029. 

With talk of access to updated covid vaccines being restricted this fall, I asked if I would qualify as having a high-risk condition. She said yes, mentioning my history of cancer more than my history of heart conditions.

We actually spent more time talking about non-cancer-related issues, like cardiovascular health in general. My blood pressure and cholesterol are both a little high, so we covered the usual instructions of exercising regularly and minimizing sodium intake. 

She used a cardiac risk calculator, which put my risk of having a cardiovascular event in the next 10 years to be 1%, well below the 7.5% threshold for concern. 

She also talked about a CT scan for calcium deposits in arteries as something we might do at some point, as a precursor to considering statin medication. Not really sure why she mentioned this now, since she said my cholesterol numbers aren't high enough yet to be really worried (and if they were, I'd probably want to try diet and exercise first), plus she said this test isn't covered by insurance.

6/5/25: Medical Oncology NP Appointment

Today's appointment was a full year after my last oncology appointment, and I have to say, it felt different. Cancer somehow seemed less close, like I can now imagine being in a mental place where cancer might feel like something "in the past". It's not something I can ever really forget - my missing breasts are a constant reminder - but maybe it could be more like "something I went through" rather than "something I'm going through".

Anyway, my NP greeted me with a big hug. She asked all about how my kids are doing, and what our summer plans are. It felt almost like catching up with an old friend, except it was all one-sided about me, though she does sometimes drop bits and pieces of information about herself in the course of our conversations. (For example, I know our families enjoy the same types of board games.) I expect to be cut loose from oncology appointments once I'm finished with 10 years of hormone therapy, and I anticipate feeling kind of sad about "losing" this semi-personal relationship. 

Of course we did get around to actual medical stuff. She brought up my last bone density test results. Yes, the numbers are getting worse, but she spoke positively about how they haven't crossed the osteoporosis threshold yet. She recommended I increase my weight-bearing exercise by wearing a weighted vest (like 8-12 pounds) when walking, which her own doctor recommended for her as well.

Other than that, I basically reported no change in my hormone therapy / menopause side effects, as described in my post for last year's appointment. 

My next appointment is in another year, and it will be with my oncologist. It's typical to alternate appointments between the doctor and NP, and I have no idea why they kept scheduling me with the NP in recent years, but I didn't mind since I like and trust her just fine. I haven't seen my oncologist since 2022, so it'll be almost 4 years by the time I do see her! I wonder if I'll be able to tell if she really remembers me personally, or if she'll just be going off my medical file.

1/8/25: Update on Brain Fog + I Got Covid Again

I continue to have trouble "finding words". In my previous post about chemo brain, I suspected that my "loss of words" might be similar to the "brain fog" associated with long covid, and it remains a big part of why I am covid-cautious; if getting covid means this problem could potentially get worse, then to me it's worth it to take steps to try to prevent getting covid. 

Recently, I came across this study, which basically reinforces my resolve to stay covid-cautious. The abstract says:

These findings reveal significant word retrieval difficulties in PCS [post-COVID-19 syndrome] patients, suggesting that cognitive impairment related to language may be more pronounced than previously understood.

Of course I haven't had any cognitive testing, and I haven't been diagnosed with PCS a.k.a. long covid, but now I'm even more inclined to believe that maybe my 2022 bout with covid did exacerbate my chemo brain, at least in regards to word retrieval. I also wonder if this type of brain function might improve on its own over time, or not. The study does note that "intervention" may help:

The findings suggest that patients with PCS may benefit from tailored interventions focusing on improving lexical retrieval and semantic processing.

Unfortunately, it also occurs to me that if one covid infection might have aggravated my brain fog symptoms, then even if they do improve on their own, they could still get worse again if I get another covid infection.

Which I did. I had my second known covid infection a week before Christmas 2024, so I'm 2-for-2 for covid ruining Christmases. For the record, the course of my illness was very similar to last time, except the duration was shorter. Instead of having a fever for 3 days, this time my fever lasted only 1 day; instead of finally rapid testing negative on Day 11, this time it was on Day 8.

I will now take this opportunity to gripe and rant about the pitiful state of public health. I take precautions to try to prevent infection, but ultimately the transmission of viral illnesses comes down to public health requiring widespread public action. Individual action just isn't enough. I got infected because someone else was infectious and didn't stay home or wear a mask. Current CDC guidelines for covid are based solely on symptoms; there is no longer any isolation period nor any recommended protocol for using rapid tests to help gauge infectiousness, and masking is only tepidly suggested as optional. (The guidelines surprisingly do include "Steps for Cleaner Air" - conceding that respiratory viruses are airborne - but it feels disingenuous because there are no required building standards and as an individual, I have no way to assess or control the ventilation or air quality in schools, at work, in stores, or in any indoor public places at all.)

Since it's already known that symptoms are not an indication of infectiousness, these guidelines literally encourage people to spread covid. Even this mainstream media article states:

With COVID-19, you can expect to be contagious for about one to two days before symptoms appear, and stay contagious for up to eight to 10 days after symptoms start.

Previous CDC guidelines, available now only in archives, were much clearer about infectiousness. As far as I know, nothing has changed in terms of rapid tests or the virus itself that would make these recommendations invalid: 

Note: If your antigen test results are positive, you may still be infectious. You should continue wearing a mask and wait at least 48 hours before taking another test. Continue taking antigen tests at least 48 hours apart until you have two sequential negative results. This may mean you need to continue wearing a mask and testing beyond day 10.

I know not everyone can afford rapid tests, so don't get me started on how I think the government should make rapid tests free and widely available in unlimited quantities. Why are we still paying roughly $10 per rapid test in the U.S. when they can be purchased for less than $1 per test from this German retailer?

Considering the fact that we eliminated a flu strain with precautions designed for covid, it's clear that mitigations work to reduce the spread of respiratory viruses, covid or not. Yet, still people will not wear a mask even when they know they are sick. They are happy to spread their viruses to others, and I just find that lack of consideration so disheartening.