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.

6/4/24: Medical Oncology NP Appointment

My last appointment was about a year ago. Thankfully, there's no new medical issue to report. Since being diagnosed, the longest stretch I've had without any new problems popping up is about 1 year. I'm hoping to set a new record now. (Knock on wood.)

My appointments used to alternate between my oncologist and this medical oncology NP, but today's appointment with my NP was the 2nd time in a row seeing her, and my next appointment - which will be in 1 year - is also scheduled with my NP. We didn't discuss it explicitly, but I think now that my health is relatively stable, my oncologist's time is better spent with patients who are in active treatment. 

This will actually be the first time I'll be going a full year between appointments with a breast or cancer specialist. My last oncology appointment was a year ago, but I saw my Breast Center NP about 6 months ago. That was my last scheduled follow-up with them, so there won't be a 6-month check-in this time. But, my NP was very kind and clear that I can always call for an appointment at any time.

I really like my NP. She spent over 30 minutes with me, and for much of that time we chatted about kids, vacations, the end of the school year, etc. A lot of the conversation was in reference to my increased anxiety, which could be from the anastrozole (hormone therapy pill), surgical menopause after having my ovaries out, or even situational (June is always a busy month, plus my oldest child is graduating high school). I told her how I know what being anxiety-free feels like because that's how I feel when we're on vacation! And I really appreciated that she said, with all seriousness and without any condescension, "Life really is hard." And that's just it. Life makes a lot of demands on us, and it always will. She also tried to gauge the severity of my anxiety by asking me if I get paralyzed by it, which I don't. Sometimes it slows me down because I'll fret and fuss over something for a while, but I am always able to eventually move on and get things done. 

For the record, I still have a bunch of hormone therapy side effects, which haven't changed much. I do get fewer hot flashes these days, though when I do get them, they're still accompanied by anxiety. I wake up every morning with stiff fingers; I can't even close my hands into fists until I pump my fingers and exercise them for a while. The first three fingers on each hand are still very faintly numb, but I only notice it when I tap my thumb against the next two fingers. I don't sleep well at all; I have trouble falling asleep unless I go to bed very tired, I get up at least 1-2 times a night to pee or because I'm feeling warm, and then I frequently wake up too early feeling anxious. 

Oh, one last thing. I'm supposed to get another bone density test, which I've been getting every 2 years, to check on the state of my osteopenia.

3/12/24: My Dad Got Genetic Testing

Turns out, my dad has the same BRCA2 VUS that I have.

He went through the process of getting tested with my genetic counselor, and on the report he got with his results, it says:

"[T]here is one Chinese based laboratory that suggests the variant is likely pathogenic (associated with cancer risk), and another Italian based laboratory that suggests the variant is likely benign (not associated with cancer risk)."

Both labs are outside the U.S. and their standards are unknown. Plus, with contradictory findings, it's just a lot of data that doesn't actually move the VUS classification.

The report goes on to say that additional family genetic testing can help "in an effort to learn more about whether this particular variant in BRCA2 tracks with the cancer in your family." I think it's very interesting that my dad and I both have this variant and we both had cancer (my dad had prostate cancer, which is also linked to the BRCA2 gene), while my 3 cousins who got tested all do not have this variant and do not have a history of cancer. We have a few more relatives on that side of the family who have had cancer but haven't gotten genetic testing; I'd be interested in knowing their results!

1/11/24: Final NP Appointment

Today was my last yearly follow-up in the Breast Center. I was diagnosed in 2019, and they follow patients for 5 years following diagnosis.

The appointment took all of 5-10 minutes. The NP did a breast exam and thankfully didn't find anything. She asked about my side effects from anastrozole, and also about the latest developments in my genetic testing situation. Just like in previous years, I was impressed that she had clearly reviewed my medical records beforehand.

She started to wrap up the appointment and didn't even mention that this would be my last one. I made sure to confirm that I wouldn't have any more follow-ups, and she said very nonchalantly that I should call if I have any concerns. That's it. It was all rather unceremonious.

It's interesting that I used to feel anxious at the idea of not having regular follow-ups, but now that the time has come, it does feel good to move forward. I do still have my oncology appointments, so I'm not totally on my own yet.

Tangentially, this appointment brought up some thoughts on covid. Following national trends, my area is just now coming down from the 2nd highest surge after the Omicron peak. My hospital's current mask policy requires staff to wear masks when in patient rooms, but not elsewhere, and patients and visitors do not need to wear masks. Since we know that covid is airborne, this mask policy is performative at best. During my visit today, the receptionist who checked me in was not masked, but did require me to use the hand sanitizer. My medical assistant who took my vitals and the NP were both masked, per hospital policy. But out of the scores of people I saw while walking through the hospital to the Breast Center, only a handful of staff were masked, and literally half of them wore their mask below their nose. I saw only 2 other patients in masks, and both, like me, were in high-quality masks. If you know, you know. 

As it turns out, no one ever asks me why I still take covid precautions (e.g., avoiding crowded spaces, masking in public, rapid testing for everyone before unmasked small indoor gatherings, opening windows to improve ventilation, and using HEPA air purifiers). For the record, it's partly because of my medical history and not wanting to risk having complications. Also, it's partly because the one time I did get covid, it was dreadful and highly disruptive, so worth not repeating. Another major factor, though, is wanting to prevent long covid. The risk of long covid (which includes a laundry list of possible symptoms and conditions) is about 10%, though new studies are coming out all the time; vaccinations decrease the risk, but repeat infections increase the risk. I think most people figure, "It won't happen to me," but as someone who got completely blind-sided by breast cancer, I now lean more towards, "It could happen to me." And as someone who knows what it means to have a chronic illness -- how it requires an immense amount of time, energy, and money to manage (e.g., researching conditions, finding specialists, scheduling and going to appointments, working out insurance issues, paying lots of medical bills, etc.) on top of dealing with the actual symptoms, and how all of that can be incredibly disruptive for an entire household -- I'm willing to take steps to do what I can to lower my risk and preserve what normalcy I have left, and the best way to prevent long covid is to not get covid in the first place.