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.

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).

6/12/20: Maintenance Herceptin #9 + Lupron

I arrived at 9:15. There was a new pexiglass barrier on the reception desk between me and the person checking me in. She handed me a surgical mask and didn't ask me for my name. Through all the crazy uncertainty of the last few months, my visits to the Cancer Center have been a surprisingly grounding routine.

While waiting for the port nurse, the social worker happened by. She greeted me by name, and I felt bad that I couldn't come up with her name right away. There's actually a thing called "chemo brain", a chemotherapy-related cognitive impairment. I think I have it. I've had trouble coming up with the right word since even before being diagnosed with cancer, so I can't blame chemo for all my mental fogginess.

But there are two things in particular I've noticed over the last several months. First, I am taking a lot longer than usual to read books. I find myself frequently re-reading sentences, so much so that it sometimes feels like I read every sentence twice in order to process it.

Second, I can't follow complex, fast-paced TV shows anymore. We recently watched the series Star Trek: Picard, and I had trouble keeping up, even my kids (in middle school) rolled their eyes at my questions. Then, inspired by Picard, I went back and re-watched episodes of Star Trek: The Next Generation. I specifically remember watching an episode maybe just a couple years ago, and being impatient with how slowly the story unfolded, how every detail was explicitly spelled out, as if the audience couldn't be trusted to make inferences. Watching the show now, I am practically relieved at how clearly events and dialog explain what is going on; the exact thing that used to bother me is now something that helps make the show enjoyable for me.

Anyway, the social worker was on her way to somewhere else, so we only exchanged pleasantries. I think it would have been nice to chat with her for a while, but I guess I don't feel "in need" of talking to her, so it's okay.

For the first time during this pandemic, the port nurse accessed my port (which used to be routine), instead of having the infusion nurse do it (presumably to minimize exposure risks). Even with the orange "Allergy" tab hanging off the "Screened" sticker on the front of my shirt, I had to remind her to use the Betadine instead of chlorhexidine. I think I've gotten more comfortable with speaking up for myself, and less indignant at this kind of oversight. I don't know if it's because I have general confidence in the port nurse, or if it's because I feel a sense of familiarity with her, or if I've just become more understanding that medical providers are human, too, and can make mistakes.

With my port accessed, I didn't have long to wait before being called into the infusion room. Apparently, the forehead thermometer was broken and sent off for repair, so the medical assistant was back to using an oral thermometer.

My infusion nurse came in pretty much as soon as I got settled into my bay. I told her all about the flare-up with my numb and tingly hands, and how doing nothing has gotten them back to baseline.

While getting me started on the Herceptin, she briefly wondered if maybe I should take a break from the hormone therapy, thinking it might be the cause of my hand troubles. I immediately felt uneasy about that option. Stopping my hormone therapy might give the cancer just the chance it needs to start growing again... Also, I pointed out that the first time my hands felt numb and tingly was before I even started exemestane. So maybe the exemestane has exacerbated the issue, but it definitely wasn't the initial cause. Still, that didn't rule out Lupron as the culprit.

I told her how I had found some web sites that link carpal tunnel syndrome with Herceptin. Like my medical oncologist, she didn't seem familiar with the connection, but didn't discount it either. I told her how I've been thinking that maybe if I can just get through my year of Herceptin treatment, then I'll also be almost a year out from chemo (so any residual effects from Taxol should be gone, too), and maybe the problem will just go away! At least I'll have fewer variables by then; after Herceptin is over, I'll only be getting hormone therapy with Lupron and exemestane.

My infusion nurse said the problem with my hands was clearly interfering with my life, and she suggested it might be time to see an orthopedic hand specialist. Maybe they can actually diagnose carpal tunnel syndrome, or rule it out. Again, I felt a little reluctance. That's yet another specialist, another referral, more appointments, maybe more imaging. I don't want to get bogged down chasing this symptom if there's a possibility it might just go away on its own in the fall? But I guess I don't want to risk the symptoms getting worse, either... Anyway, she said she'd touch base with my doctor about making a referral. I think I will be extra vigilant about not over-using my hands and arms, and I'll consider the specialist if my symptoms take a turn for the worse again.

I asked my nurse if she knew when my physical therapist would be accepting patients again. My medical oncologist had said that commonly one of the earliest treatments for something like a pinched nerve is physical therapy, so maybe it would help if I could see my physical therapist again, before turning to a hand specialist? But she didn't know when my physical therapist would be available.

Once my Herceptin was finished, I didn't have any wait at all to get my Lupron shot. I washed my hands and was out of the building by 10:45. Only ninety minutes total! I think that may be a record.