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.

9/13/24: Cost Update

Our high-deductible health plan runs from July to June, which means our deductible gets re-set on July 1. So far, it seems like I (along with the rest of my family) have enough medical appointments that we reach our deductible late in the coverage year, which means finally in June some appointments are 100% covered by insurance! And then we start all over again, paying a lot for appointments starting in July.

Here are the latest numbers, including the amount billed (which I add to the "total cost") and the amount I had to pay after insurance processed the claim (which I add to the "cost to me").

10/23/23: Anastrozole (generic): $545.99 (Covered by insurance)
1/11/24: BreastCare NP Appointment: $221.00 (I paid $195.29)
2/1/24: Anastrozole (generic): $545.99 (Covered by insurance)
4/27/24: Anastrozole (generic): $545.99 (Covered by insurance)
6/4/24: Medical Oncology NP Appointment: $221.00 (Covered by insurance)
6/4/24: Medical Oncology NP Hospital: $134.00 (Covered by insurance)
6/25/24: Cardiologist Appointment: $326.00 (Covered by insurance)
6/25/24: Cardiologist Hospital: $586.36 (Covered by insurance)
7/26/24: Anastrozole (generic): $545.99 (Covered by insurance)
8/14/24: Bone Density Radiologist: $44.00 (I paid $24.30)
8/14/24: Bone Density Hospital: $764.00 (I paid $304.90)
8/21/24: Echocardiogram Cardiologist: $230.00 (I paid $175.39)
8/21/24: Echocardiogram Hospital: $1,494.00 (I paid $1,348.20)

Total cost to date: $477,691.38
With insurance, cost to me: $16,908.63

8/28/24: I Got a Pfizer Updated Covid Vaccine

I decided to make this post because I've kept track of most of my previous covid vaccinations on this blog, and my cancer-related medical history is a big reason why I remain covid-cautious.

I got the new updated 2024-2025 covid vaccine on Wednesday, the first day it became available at my local CVS. I didn't have a choice for the brand and it happened to be Pfizer. Primarily I wanted to get my daughter vaccinated before she moved into her college dorm, and I was so relieved it was possible, since earlier estimates put the new vaccine roll-out in early September. Once I decided to get her vaccinated ASAP, it made sense to schedule my son to get vaccinated at the same time because he'll also be facing crowded classrooms again soon. Then it was just a matter of convenience to make it a group appointment for all of us.

My experience this time was pretty similar to my previous mRNA shots. I got the vaccine at 10:00 AM, and felt mostly fine all day. By the evening, though, my left arm (where I received the injection) hurt a lot, from my elbow through my shoulder and back. I couldn't raise my arm above my head. That night I hardly slept at all, I felt achy all over and couldn't get comfortable. Around 6:30 AM I had a headache and a fever of 100 F, so I took 2 Advil and went back to sleep. When I woke up again around 9:00 AM, I felt a whole lot better. For the rest of the day, besides feeling a little extra tired, I just had the sore left arm.

It occurs to me that since I had a lot fewer side effects with last year's protein-based Novavax vaccine, it might be worth it for me to hold out for Novavax each year instead of getting the first available mRNA vaccine. Apparently it takes longer to produce the protein-based vaccine, which means Novavax will almost always be released later than the mRNA vaccines from Pfizer and Moderna. But there's a lot to be said for the convenience of the whole family getting vaccinated together, and with my kids still in school, I think I'll always want them vaccinated as soon as possible when classes start.

8/25/24: I've Been Thinking About My Chemo Brain

I've posted before about having chemo brain, which can last years. I was previously least concerned about being unable to "find words", but now it's the symptom that bothers me the most, almost distressingly, as its frequency of occurrence has increased greatly.

Everybody has that experience of forgetting a word once in a while, when it's on the tip of your tongue but you just can't come up with it. This happens to me literally every day, multiple times a day. In fact, I'd say it happens any time I have any kind of conversation that goes beyond a few sentences. People with whom I'm speaking will generally graciously ignore my verbal bumbling, or chalk it up to aging, but I know a lot of people my age and older and the extent to which I can't produce the words I want is simply not typical.

This symptom, and chemo brain in general, sounds a lot like the "brain fog" that is often associated with long covid, and studies have actually linked the two.

My husband agrees that I am "not finding words" much more often compared to a few years ago, and I sometimes wonder if getting covid in December 2022 could have exacerbated the problem.

Recently, another possible factor has come to my attention. When I had both my ovaries removed, I knew that "increased risk of dementia and other changes in mental function" were possible, though my OB/GYN dismissed that particular concern based on lack of evidence, especially when weighed against the more immediate risks of breast cancer recurrence or ovarian cancer.

Now, a new study has come out connecting bilateral oophorectomy with reduced white matter in the brain. The article refers to other research that "found that patients who've had both of their ovaries removed before they hit menopause face a higher risk of cognitive impairment and dementia later in life."

But how much later? Is it possible that early signs of cognitive impairment might show up within a couple years? I got my ovaries out in June 2022, which means my post-oophorectomy period basically overlaps with my post-covid period. Might either or both these events have been a contributing factor to my increased inability to find words? 

Yet another consideration is my hormone therapy, which completely eliminates estrogen in my body. There's a lot going on between estrogen and the brain, and lots of research that studies it. I started taking an aromatase inhibitor right after finishing chemo, so again, those potential causes overlap, and also wouldn't explain the worsening of symptoms. Still, it probably doesn't help that one study found, "A pattern of decline in working memory and concentration with initial exposure to anastrozole was observed," with a caveat saying, "The longer term (> 18 months) effects of anastrozole on cognitive function remain to be determined." I am holding out just a little bit of hope that maybe I'll see some kind of improvement when I stop anastrozole in about 5 years.

Who knows. Without formal cognitive testing, including baselines, I'll never know for sure what's going on. It's just something I've been thinking about lately.

Suffice it to say, my medical history includes multiple things that could have negatively affected my brain function in very noticeable ways. It's just one more reason for me to continue to be covid-cautious; I can't do anything about having had chemo or a bilateral oophorectomy, and I choose to continue with anastrozole to help prevent cancer recurrence, but since every covid infection carries a risk of damage to the brain, I can try to preserve what brain function I have left by trying not to get covid again (by masking indoors, avoiding crowds, staying up-to-date with vaccinations, rapid testing before gatherings, meeting others outdoors when possible, using air purifiers and promoting ventilation with open windows where possible, monitoring wastewater data and staying informed, i.e., the type of things recommended by Yale School of Public Health).

8/22/24: Echocardiogram Results

Yesterday I had an echocardiogram. I'm sure the cardiologist is looking for any number of things in the results, but mainly I am interested in whether or not my ejection fraction is holding steady above 50%.

I got the results online and the first thing I noticed is that my online visit summary uses the word cardiomyopathy, which was interesting mainly because I don't recall my doctor actually using that word.

Anyway, I'm relieved that my ejection fraction is now 59%, which to me feels like a marked improvement from last year's 50-55%, though the report says "no significant change". It's still lower than my pre-Herceptin baseline of 63%, but I think it's high enough that I won't worry so much about it anymore.

8/15/24: Bone Density Test Results

I'm supposed to get a bone density test every 2 years while on anastrozole, which puts me at risk for osteoporosis.

Previous tests showed that I do have osteopenia, and this year's results are no different.

I had the imaging done yesterday and got the results online today. My T-scores this year are:

• Lumbar spine: -1.5 (down from -0.5)
• Right proximal femur: -1.6 (down from -0.9)
• Left proximal femur: -1.8 (down from -1.2)
  

The report describes the "change from previous" as "-8.8%, statistically significant change", but at least it's not in the osteoporosis range yet.

For the record, I do take both calcium and vitamin D to help prevent bone loss. I wonder if maybe my numbers would be even worse if I weren't taking these supplements.

6/25/24: Cardiology Appointment

Today I had a 1-year follow-up appointment with my cardiologist.

The first thing they did was do an EKG. Without being specific, my cardiologist said the results were "weird in the same way as last year." In last year's appointment notes, she called it "inferior and anterolateral ST depressions". In this year's appointment notes, she mentioned only "NS diffuse STT changes", which I looked up and appears to refer to "non-specific" changes in the "ST-T wave" that are "seen in all or most of the leads". 

I have no idea how to read an EKG printout, but in the past I still liked to keep them for my records. Now my hospital has moved to a new online system, which doesn't give me access to EKG results! Too bad. 

The cardiologist asked me a bunch of questions to see if I have any symptoms of heart trouble. Do I get winded going up a flight of stairs? Do I get tired while grocery shopping? Do I ever get dizzy? I don't seem to have any symptoms, so she'll just continue to recommend EKGs every 6-12 months while I'm on hormone therapy. I don't think it's clear whether these EKG abnormalities are related to hormone therapy or covid, so I guess there's not much to do but monitor it.

I asked her about magnesium supplements. I had previously asked my medical oncology NP about taking magnesium for anxiety, and she was supportive of the idea, though my PCP was not keen on it. My cardiologist said she's not concerned about heart issues as long as I took a "typical" dose, but then went on to say things similar to what my PCP said, like instead of supplements, she favors getting more magnesium naturally via diet, and trying to manage anxiety via lifestyle changes.

Anyway. We talked a lot about my blood pressure, which is just borderline high. She said the goal is for my blood pressure to be below 130/80. My top number is very consistently below 130, but my bottom number hovers around 80. I like that she talked about wanting to lower my chances of needing medication some day, which means I really need to make more of an effort to consistently exercise / walk for 150 minutes a week. We also talked about minimizing sodium intake, eating more vegetables, and staying hydrated.

Finally, she ordered an echocardiogram, which I scheduled for August, to make sure my ejection fraction is stable in the normal range. She said as long as it's in normal range, even if it's low, we'll just monitor it via echocardiograms "periodically," which I assume means some frequency less often than yearly.