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. 

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.

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.

8/28/24: 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).

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.

10/17/23: I Got a Novavax Updated Covid Vaccine

It looks like I didn't bother to blog my last year's covid booster, but for the record, I got the bivalent Pfizer vaccine in September 2022. I had side effects in line with previous Moderna 1st dose & 2nd dose shots and Pfizer booster, which is to say, I had varying degrees of whole-arm soreness, fatigue, headache, fever, chills, and body aches.

Yesterday, I got the Novavax updated vaccine. Pfizer, Moderna, and Novavax all have updated 2023-2024 formulas that target more recent variants. Pfizer and Moderna were approved by the FDA in September, but I purposely waited for Novavax approval (which came in early October) because there's a line of thinking that maybe the Novavax protein-based vaccine might offer broader and/or more durable protection, especially following previous shots of mRNA vaccines. Novavax is also supposed to have fewer side effects, which did ring true for me (more on that later in this post).

So far I've gotten all my covid vaccinations either through a doctor's practice (which I prefer) or at CVS, but the first place near me that had Novavax available was Costco. I was a little nervous about insurance coverage, but thankfully everything went smoothly, and the shot was free to me. Interestingly, this was the first time I was not asked to wait 15 minutes afterwards for observation, and they did not update my vaccine card. (I wrote it in myself on the back, just for my own records.)

I usually get all injections in my left arm simply because I'm right-handed, but since I just got my flu shot in my left arm recently, I figured I'd use my right arm for the covid shot to keep potential localized side effects separate.

Somehow, I totally forgot that I should always get injections in my left arm!! Because I got fewer lymph nodes removed from that side, and injections are a risk for lymphedema. Plus covid vaccines specifically may cause lymph node swelling, which is especially undesirable on my right side (the side with more lymph nodes removed) because that side still always feels a little numb and puffy already.

I got vaccinated around 12:30 PM yesterday, and by the afternoon, my arm was achy/sore at the site of injection, and then the discomfort spread into my underarm. I didn't have any trouble lifting my arm above my head, which was the case with Moderna, but I did feel some extra numbness/puffiness in my right armpit, which is what prompted me to remember that I should have gotten the shot in my left arm in the first place.

I felt tired last night, but I ended up reading in bed and didn't actually fall asleep all that much earlier than usual. So, I did have tiredness as a side effect, but not nearly as much as with Pfizer and Moderna.

Today is the 2nd day after Novavax, and the only side effects I've had continue to be upper-arm soreness, swollen armpit, and some tiredness. All in all, a more comfortable experience than with Pfizer and Moderna, and I suspect it would have been even better if I had gotten the shot in my left arm.

6/26/23: Cardiology Appointment

The first thing I'll note is that no other patients were masked, and the only masked staff was a single medical assistant. This lack of masking was particularly surprising because I naively thought that cardiology, of all medical spaces, might have a higher masking rate because of the well-documented heart-related risks associated with COVID-19. Add to that, my hospital network is currently in the local news for having its first covid outbreak since ending their mask mandate, so clearly covid risk in medical facilities is still a concern. 

Anyway, other than not wearing a mask, my new cardiologist was nice enough, and explained things well. She clarified that the "arrhythmia" seen on my last EKG was a "sinus arrhythmia", which is actually normal! She said she explained this to my medical oncology NP, but still wanted to see me to 1) keep an eye on my heart function after having had Herceptin, and 2) just make sure there's really nothing wrong, since all my EKGs seem to be a little different every time.

She went through a lot of medical history questions, and clarified when I was taking which medications. She confirmed that I did not change medications between my previous EKG and the most recent one. I made a point to mention that I did get covid during that time, and she asked me a lot of questions about fatigue, shortness of breath, activity level, etc. She repeated several times that she "wasn't worried" because, despite all these weird EKGs, I have no physical symptoms of heart problems. (She did not use the word "weird", that's my word.)

At the start of today's appointment, a medical assistant took my blood pressure and did another EKG. The blood pressure was a little high, and the EKG had a small anomaly; the doctor drew a typical heartbeat pattern and said that where my heartbeat would be expected to go up and then level out, it actually went up and then a little down and then leveled out. (In the appointment notes that I can see online, she called it "inferior and anterolateral ST depressions".) She pointed out that EKGs are just a snapshot of heart activity, and she thinks the EKG anomaly was related to my blood pressure being temporarily high just because of the appointment setting (a thing sometimes called white coat hypertension, which I think I may have encountered before). 

She did take my blood pressure again, towards the end of my appointment, and lo and behold, it was lower than before. She suggested I take my blood pressure at home (a few times a week, at different times of day, after sitting for 10 minutes, and with my arm resting on a surface), and bring the numbers to my next appointment.

Today's EKG showed no sign of the prolonged QT interval, but the cardiologist did recommend that I stay away from certain medications that may affect QT interval. (She included a list of medications to avoid in the appointment notes that I can see online.)

She also said I should come in for a stress test. I would spend some time on a treadmill, and they'll take measurements before and after. Additionally, I should come back in 1 year for a follow-up.

I made both these appointments before leaving the office. I am pretty sure that the person doing the scheduling at the front desk was the same person who called me before, and she was just as gruff in person as on the phone!

6/5/23: My Medical Oncology NP Called Me - I Have an Arrhythmia

Just when I thought my treatment had settled into a stable state!

My medical oncology NP called to tell me that even though my recent EKG showed my QT/QTc is in the normal range, it also showed a kind of arrhythmia. It wasn't there before and so they want me to get it checked out by a cardiologist.

I am really getting kind of tired of this M.O. Every time I think my treatment is stabilizing, something new pops up. I was fine on exemestane, until my ovaries kept making too much estrogen, and so I had to switch to Tamoxifen. I was fine on Tamoxifen, until I developed non-alcoholic fatty liver disease and had to switch to anastrozole, which meant I had to get my ovaries out (since they were still making too much estrogen). A routine pre-operative EKG showed I had borderline QT prolongation, which resolved after I stopped Lupron, but now I have this arrhythmia! Ugh.

Actually, my NP said that she wanted to send me to a new cardiologist because the one who found my borderline QT prolongation works in a clinic and doesn't take regular patients. Knowing the value of self-advocacy, I reminded her that I used to see a cardio-oncologist back when I had a low ejection fraction while on Herceptin. My NP said she would call that cardio-oncologist and figure out next steps for me; maybe the cardio-oncologist can compare my EKG with previous EKGs and see that the arrhythmia is harmless, or else I might need to schedule an appointment. Either way, she seems to think that my yearly EKG screenings going forward should be done by cardiology. 

Now, I know there are a lot of long-term risks related to ovary removal, but I haven't found anything specifically mentioning heart arrythmia, and anyway my first EKG after my oophorectomy was fine. But what changed between that EKG and this EKG? I got covid. And there's plenty of evidence that COVID-19 can cause heart problems. 

What strikes me, too, is that, covid or not, whatever this is, it probably would not even have been found if I weren't getting screening EKGs as part of cancer treatment.

6/1/23: Medical Oncology NP Appointment

Today's appointment was my first time going to the Cancer Center since the state's universal masking policy for medical facilities ended. I was so disappointed to see not a single employee wearing a mask. Besides me, I saw only 2 other patients in masks. This is a place where actual immunocompromised and high-risk people go to get life-saving medical care, and still nobody could be bothered to help protect them by mitigating the spread of COVID-19. This reality has been a very hard pill for me to swallow.

(Without giving away my location, I'll just note that the COVID-19 wastewater data for my county shows values almost as high as Winter 2020-2021 levels, relatively low compared to our ginormous Omicron peak, but certainly not objectively low.)

Interestingly, my NP told me that even though masks aren't required, they do still expect symptomatic people to wear masks. She said there was a woman recently who came in coughing, and when she refused to wear a mask, they actually sent her home and made her re-schedule! While this kind of policy doesn't address asymptomatic transmission, it's definitely better than nothing, so I appreciate it.

Now, about my appointment.

I don't know for sure if this was the first time this has happened, but I actually had nothing new to report. I still have all my usual side effects from surgically-induced menopause and anastrozole - joint stiffness, hot flashes, anxiety, poor sleep - plus lingering neuropathy from chemo, but none of that is new.

My NP said that even though I consider my hot flashes manageable, and they "only" happen a few times a day - an improvement from when they used to happen many times a day - she said I don't have to live with them, and she asked if I wanted to try Effexor, which can treat both hot flashes and anxiety. (I Googled the medication at home, and it turns out it's actually an antidepressant that is frequently prescribed off-label for menopausal hot flashes.) 

I'm not keen on taking medications if I can help it, so I asked about magnesium, which the Hormone Repair Manual recommended for hot flashes, and which Google says can also help with anxiety. My NP was supportive and said she takes magnesium herself, for other reasons. She recommended 300-400 mg daily in the form of magnesium glycinate. There are many forms of magnesium, and the Hormone Repair Manual also recommended magnesium glycinate. (My NP said magnesium citrate would be fine, too, but my local pharmacy didn't have it. She also said to avoid magnesium oxide because diarrhea is a common side effect.) My NP suggested I start by taking it every other day, just to make sure I don't have any negative side effects, before increasing to daily use. 

Moving on, we discussed my hepatology appointment, and then she did a physical exam.

She did not mention doing an EKG, so I asked if I should get one. Once again, my self-advocacy paid off; she confirmed that my notes said I should get an EKG every 6-12 months. My last EKG was 7 months ago, so she decided we could do one today, and then do them yearly moving forward. Getting an EKG is a little funny because it takes a while to position all the leads, but then the procedure itself takes just a few seconds, and all the leads that took so long to put on get taken right off. Anyway, I took a peek at my printout and saw that my QT/QTc was 424/424 ms, which is within the normal range. Yay!

Planning ahead, my NP said that I could make my next appointment in a year. Normally I have an oncology appointment every 6 months, but since I'm relatively stable right now (knock on wood), she said it's good enough for me to have my Breast Center appointment in 6 months (already on the calendar), and then my next oncology appointment 6 months after that. But, since my next Breast Center appointment is expected to be my last, they may have me go back to having oncology appointments every 6 months after next year. In the past I have been a little nervous about lengthening the time in between appointments, so she reassured me that I can always call if something comes up; surprisingly, I actually felt fine about not returning sooner, maybe because I haven't had any unexpected complications lately, but also because I'm not too eager to go back now that they've dropped their mask mandate. 

1/7/23: I'm Out of Isolation

For the record, I first tested "maybe negative" on Day 11, Thursday, January 5. The thing about rapid tests at the tail end of the illness is that it's hard to have confidence that it's really negative. Sometimes, the line was so faint that I wasn't even sure it was there. (Notably, though, any time I was unsure, my son with presumably better eyesight almost always said he could definitely see a positive line.) 

Another problem was, the window for reading a rapid test is usually 15-30 minutes, but what if the positive line appears after an hour? Does that still count as very mildly infectious, or is it totally invalid?  

That's the kind of inconclusiveness I faced on Day 11. Complicating matters even more, I still had symptoms: congestion and a mild sinus headache. (Interestingly to me, I've rarely had sinus issues when sick in the past, but this bout with covid gave me the worst and longest sinus headache I've ever had.) I just wasn't sure if having symptoms might still make me contagious, even though I tested negative.

From what I can gather, it's not uncommon for acute covid symptoms to last for "a few weeks", but it seems the person is presumed not infectious as long as they are negative on rapid tests. (Lingering symptoms would not be attributed to long covid until at least 4 weeks after infection, or 3 months according to the WHO.)

Still, just to be sure, I followed the strictest guidelines offered by the CDC. At the very, very bottom of their page on isolation, there is a literal "Note" that implies you might still be infectious until you have two sequential negative rapid tests separated by 48 hours. Counting my "maybe negative" on Day 11 as a negative, I got definite negative results on Days 12 and 13 (today), so I ended isolation today.

The congestion and mild sinus headache persist, though, plus I'm still feeling run down and tired, so I plan to take it easy until all symptoms are gone. 

Incidentally, my husband tested "maybe negative" on his Day 12, and by then he was already symptom-free.

1/3/23: I Got Covid (Tested Positive on 12/26/22)

I am not the most covid-cautious person I know, but I am sure that I am the most covid-cautious person other people know. I still do almost all of my socializing outdoors. I do not eat in indoor restaurants, have not attended crowded events like concerts or shows, and my family has never stopped masking indoors with people outside our household. I only go maskless indoors with small groups if everyone is symptom-free and has rapid tested negative, and even then I subscribe to the Swiss Cheese Model of Pandemic Defense (now updated with even more layers), so I also open windows to improve ventilation and run air purifiers to clean the air.

All that to say, my family has made every effort to take "personal responsibility" for our health, as the CDC has repeatedly advised. But since my teacher husband and two kids spend their weekdays in a crowded high school with <5% masking and undisclosed but presumably insufficient indoor air quality, and knowing that one-way masking is not enough when Community Transmission is Substantial or High, it wasn't a complete shock when covid showed up in our family. Still, it's pretty frustrating that my husband got covid despite wearing KF94 masks and being fully vaccinated and up-to-date with boosters. (My husband and kids do occasionally have to unmask to eat lunch indoors, by an open window if possible, when the weather is too wet or cold to eat outdoors.) I suspect we got the new XBB.1.5 variant, which is dominant in our area and appears to be the most transmissible and immune-evasive variant to date. 

The week before the holiday vacation, my husband said he knew of 2-3 students in each of his classes who had contracted covid, which means he was very likely exposed in school. The Friday before vacation, December 23, he felt under the weather, but rapid tested negative. He woke up feeling worse on Saturday (Christmas Eve), tested positive, and isolated immediately in our bedroom, which has an attached bathroom. In retrospect, we should have had him mask and/or isolate starting on Friday just in case, since I probably got covid from sleeping next to him Friday night. 

We cancelled Christmas Eve and Christmas Day plans with my dad, and the kids and I video-chatted my husband into Christmas present-opening on Sunday. I felt fine until that evening; I had a very light scratchiness in my throat, and was especially tired and went to bed early. I rapid tested faintly positive the next morning and joined my husband in isolation. 

Actually, the first thing I did was arrange for us to get PCR tests, for two reasons. First, I have been disgusted at the lack of transparency that has resulted in a massive undercount of covid cases, and I want our cases officially counted, out of principle. Second, if we were to unfortunately develop long covid symptoms, having a PCR test may help with diagnosis and accessing care. We got first available appointments at CVS that Monday morning, though we didn't receive our positive results until Thursday. We also reported our results to makemytestcount.org, an NIH website that tracks rapid test results. 

For both of us, our illnesses started out flu-like (e.g., sore throat, fever, chills, muscle aches), then transitioned to feel like a bad head cold (e.g., excess mucus, congestion), though I additionally have had a persistent sinus headache the whole time, which my husband has not had. I was laid out for a good 5 days, and for about a week was unable to watch TV or read or even use my phone much due to the sinus headache. Our illnesses may be "mild" by covid standards, but I still spent days feeling dreadful, and isolation is incredibly disruptive for the whole family, so still worth avoiding, if you ask me. 

Today is Day 9 for me, Day 11 for my husband. We are both still testing positive on rapid tests, which means likely still contagious. So, we're still isolating.

A few people have asked why we're bothering to isolate after Day 5, since the CDC says we don't have to. Quite simply, we don't want to infect our kids. In addition to carrying a risk of long covid in general, even a mild covid infection can increase a person's risk for diabetes, mental health issues, neurological disorders, cardiovascular disease, erectile dysfunction, possibly even immune dysregulation. I am not yet resigned to inevitable infection, so we're still trying to protect our kids from these potential harms. 

In addition to simply isolating, to minimize the chances of further household transmission, we've also had air purifiers running 24-7, and the unusually warm weather has allowed us to open windows on some days. I also asked the kids to mask as much as possible outside their bedrooms.

The kids have thankfully continued to test negative on rapid tests. They've been real troopers through this whole ordeal. They spent their entire vacation cooped up at home, leaving food at our door, and taking care of our dirty dishes. My father has been an enormous help, too, making three large deliveries of homecooked food for all of us.

My husband and I continue to rest, rest, rest. Hopefully we'll test negative any day now, and hopefully the kids will not get covid at school!

11/10/22: Medical Oncologist Appointment

My oncology appointments are getting more spread out, which is a good thing; fewer problems means fewer appointments. My last appointment was exactly 5 months ago, and my next appointment will be in about 7 months. After that, my oncologist said I can move to yearly appointments, ideally timed in coordination with my yearly breast NP appointments so that I alternate between the Breast Center and oncology every 6 months. My oncology appointments will continue to be scheduled with either my oncologist or oncology NP. I am acutely aware of how I used to feel when going 3 months in between appointments felt "too long", and it's interesting how I'm clearly in a new place now, able to welcome the longer time in between appointments.

But I'm getting ahead of myself.

I arrived 15 minutes early, guessing that I would need time for a blood draw, which I did.

Checking in at the registration desk, I felt a weird sense of sadness when I looked around and recognized nobody. I had gotten so used to seeing familiar faces that seeing no familiar faces at all made me feel kind of lonely. What's more, as I was getting my blood drawn, my old port nurse was in the room, too, but did not recognize me. Granted, I was masked, and back when I used to see her, I always wore a hat to hide my hair loss. Still, I did not say anything to her, for fear that she would still not recognize me even if I reminded her.

Speaking of masks, I'm very glad that medical facilities in my area still require masks, which I know is not the case across the country. Still, I will never understand why, 2 1/2 years into this COVID-19 pandemic, medical facilities continue to provide only surgical masks to staff and patients, knowing that they do not provide sufficient protection against airborne viruses. I was impressed that many, if not most, of the patients I saw were wearing high-quality N95 / KN95 / KF94 masks, though there was one guy who did not wear a mask at all. I think he was the escort for a patient who was wearing a mask, and I don't understand why he was not asked to wear a mask, or denied entry for not wearing a mask.

Anyway, during my blood draw, the phlebotomist had a difficult time filling the tubes. By now I well know the drill of having to drink extra water starting the night before a blood draw, but I just plumb forgot! I felt pretty sheepish about making the phlebotomist's job harder. 

As usual, I got my vitals taken, and was relieved that my blood pressure was fine, since it's given me a little trouble in the past.

I was glad to see my oncologist. I know she's not a friend, but she was a familiar face and has always been supportive. 

I asked if I would be getting an EKG today, and she seemed surprised at the question. I have learned to not hold it against my doctors when they don't know my whole medical file; I figure, they have so many patients, and only a few minutes to review each file before an appointment, so it's okay if they don't remember everything, as long as they think things through after I bring something up. In this case, I reminded her that the cardiologist who did my pre-surgery clearance said I should get an EKG every 6-12 months while on hormone therapy. Once she confirmed that note in my medical file, she went ahead and arranged for an EKG to be done at the end of the appointment.  

We then discussed my concerns. First, I said I'm still feeling the same very mild neuropathy in the first three fingers of both hands, presumably a remnant of chemo. At this point, I mostly ignore it, but it's there.

Then, I told her about various menopause-related side effects, presumably from taking anastrozole and having had my ovaries out. Stiffness in my fingers, hot flashes, and vaginal dryness are not new, and my doctor reminded me that if my side effects start to interfere with my daily living, I don't have to suffer, there are options, including trying another aromatase inhibitor called letrozole. 

I did tell her about a new concern, which is that my thumbs sometimes hurt now. They are stiff like the other fingers, but additionally, whenever I try to grasp or squeeze something (like a bottle), the thumbs hurt and feel weak. Sometimes it's mild and is just an inconvenience, but other times it's more severe, like I end up using both hands to hold a bottle to make sure I don't drop it. My doctor said arthralgia (pain in joints and muscles) is common with anastrozole, but there's always a chance it could be arthritis. Again, it came down to how bothersome the symptom is: if it's very problematic, I could get imaging to rule out or diagnosis arthritis, and/or get physical therapy to help manage the pain, and/or try letrozole and see if side effects improve. Otherwise, I can just monitor it and live with it. At this point, it's not so bad, so I figure I'll just put up with it.

Lastly, I mentioned the mild numbness and tingling in my right foot and leg that has been happening on and off since July. Sometimes it's just in the last 2 toes of my right foot, and it feels similar to the neuropathy in my first 3 fingers. Other times the numbness and tingling extend up my leg to some degree. Because the sensations are always concentrated in the same area, essentially in a line down the outside of my leg, my doctor thinks it's nerve-related, especially since I had a lot of similar nerve-related problems in the past. She suggested I add regular stretching to my daily routine, and see if that helps. 

After all the talking, I changed into a gown (top only) for a physical exam. Everything was fine!  

The doctor then stepped out and a medical assistant came in to do my EKG. She put one lead on each of my calves, one on each of my forearms, and 6 on my torso. She printed out the EKG on the spot and left it on the computer table for my doctor. I took a look and jotted down my QT/QTc numbers: 442/438 ms. Normal QT is 350-450 ms, and normal QTc is 360-460 ms, so it looks like I'm back in the normal range! 

When my oncologist returned to wrap up the appointment, she gave me the business card of the new social worker in the Cancer Center, in case I ever want to talk with her. Apparently, the amazing social worker who helped me through chemo retired.

Back home, I checked my lab results, and my LFTs and estradiol are both within the expected range! Yay! Maybe things are really finally settling down. 

8/17/22: Blood Draw and LFT Results

I was originally supposed to have an in-person appointment with my hepatologist this week, but the doctor's office called last week and asked if I wanted to change it to a telehealth appointment next week (presumably due to the current Delta-level plateau in COVID-19 cases in my state). From what I remember of my first hepatology appointment, an actual physical exam didn't seem critical, so I agreed to a phone appointment. (They also offered a video option, but I'm more comfortable on the phone.)

The office said the doctor would put in a lab order, so I should get my blood drawn the week before (this week), and the results would be ready in time to be discussed at my appointment. They asked which location I wanted to go to for the blood draw, which I appreciated because the hepatologist's office isn't the most convenient site for me.

Earlier this week, before making the drive to get my blood drawn, I decided to call the lab to confirm that the orders were ready. My penchant for double-checking everything paid off, because the lab had no orders for me! I had to call the hepatologist's office and tell them my expected lab orders weren't ready, and then follow up with the lab again later.

So I got my blood drawn yesterday, and then got an email late last night saying the results were available online. Interestingly, because I got my blood drawn at my usual satellite hospital's regular lab - and not the Cancer Center lab which is affiliated with the main hospital - the results aren't in the online patient portal that I usually use. Even though all my doctors are in the same hospital network, I have to use 3 separate web sites, each with its own account, to access my records: one for the main hospital, one for satellite hospitals, and one for my PCP. Yep, it's confusing.

Anyway. My liver function tests look good!! Here's a history of all my results, including the hormone therapy pill I was taking at the time. The first number is ALT, the second number is AST. The red numbers are out of range and indicative of non-alcoholic fatty liver disease.

08/16/22 26 22 Anastrozole

08/08/22 26 26 Anastrozole

06/10/22   46 34 Anastrozole

05/13/22   57   41 Anastrozole

04/15/22   78   56 Anastrozole

03/18/22   86   63 Anastrozole

02/18/22   79   65 Tamoxifen

02/08/22   74   51 Tamoxifen

01/21/22   62   53 Tamoxifen

12/23/21   65   49 Tamoxifen

06/10/21 25 22 Tamoxifen

12/23/20 18 18 Exemestane

So the main questions I'll have for my hepatologist are: Does having ALT and AST values within normal range automatically mean that my liver is no longer fatty? Getting a FibroScan is what actually confirmed how fatty my liver was, so will I get another FibroScan to confirm improvement?

8/8/22: I Checked My Insurance Claims Online

This list covers all my cancer-related medical costs through the end of June. Since we already met our insurance deductible for the coverage year, the only costs to us were the co-pays on my BSO surgery-related prescriptions.

Surprisingly, while compiling these numbers, I noticed right away that my Lupron injection in June cost a whole lot more than usual. The cost of Lupron has varied over the months and years, but generally has always been less than $1,000. Suddenly, this June, the price of one injection was over $5,000! I have no idea why.

Our insurance coverage year starts on July 1, which means our $4,000 deductible will be reset. So the next time I post a cost update, I'll have more out-of-pocket expenses to report.

4/29/22: GYN Surgeon Appointment: $608.00
5/10/22: Pelvic Ultrasound Radiologist: $839.00
5/10/22: Anastrozole (generic): $545.99
5/13/22: Lupron (Including Blood Work): $930.16
6/10/22: Medical Oncology NP & EKG Hospital + Lupron (Including Blood Work): $7,085.80
6/10/22: Medical Oncology NP Appointment: $326.00
6/10/22: Cardiologist EKG: $27.00
6/13/22: PCP Appointment + EKG: $385.00
6/14/22: COVID-19 Test: $375.00
6/14/22: Cardiologist & EKG Hospital: $227.00
6/14/22: Cardiologist Appointment: $481.00
6/14/22: Cardiologist EKG: $27.00
6/16/22: BSO Surgery Hospital: $1,627.88
6/16/22: BSO Sugery Surgeon: $2,167.00
6/16/22: BSO Surgery Anesthesiologist: $1,820.00
6/16/22: BSO Surgery Pathologist: $274.00
6/16/22: Prescription Ibuprofen: $15.49 (out-of-pocket co-pay: $2.57)
6/16/22: Prescription Docusate Sodium "Colace": $6.98 (not covered by insurance, out-of-pocket cost: $6.98)
6/16/22: Prescription Oxycodone (didn't use): $11.99 (out-of-pocket co-pay: $1.07)

Total cost to date: $460,800.23
With insurance, cost to me: $10,207.69

6/21/22: I'll Continue to Be Careful About Covid

It occured to me to wonder if having a prolonged QT interval might be a risk factor for serious illness if infected with covid.

I found a few articles about covid patients developing QT prolongation when treated with certain medications. This one says "QTc prolongation occurs in COVID-19 illness and is associated with poor outcome."

But it's more difficult finding information on how pre-existing QT prolongation might affect a covid prognosis. I found only one article about one patient who had existing QT prolongation, and it says "COVID-19 illness itself can potentially lead to further prolongation of QT interval and unmask fatal ventricular arrhythmias in patients who have a prolonged QT and low repolarization reserve at baseline." But I honestly don't think much can be made from one patient who is older and also had multiple medical conditions.

I guess it doesn't really matter what QT prolongation means in terms of covid because it wouldn't affect the way I take covid precautions. I am already super careful because according to the CDC, I have anywhere from 1 to 3 medical conditions putting me at high risk, not even including the borderline QT prolongation:

1. About having a history of cancer, the CDC says (emphasis mine): "[H]aving a history of cancer may increase your risk."
   
   
2. About non-alcoholic fatty liver disease, the CDC says: "Having chronic liver disease can make you more likely to get very sick from COVID-19."
   
   
3. About my heart function which may or may not still be reduced compared to my pre-Herceptin baseline, the CDC says: "Having heart conditions such as heart failure... cardiomyopathies... can make you more likely to get very sick from COVID-19."

Lots of uncertainties in there, but I'm not eager to find out how I do with covid, so I'll keep up preventative measures as long as Community Transmission is not low.

6/16/22: Bilateral Salpingo-Oophorectomy (BSO) Surgery

I feel pretty fortunate that I've been so pleased with the care I've gotten from my hospital network, and today was no exception. It really felt like they were taking good care of me. My post-op nurse especially made me feel like I was in good hands.

We arrived at 6:00 AM for my 7:30 AM surgery time. Actually, we arrived a bit early, and saw 2 other cars with patients waiting inside. Apparently, the entrance doesn't even open until 6:00 AM. 

When I had my pre-operative phone call, the nurse had told me that I would not be allowed to wear an outside mask, and I'd have to swap it out for the hospital-provided surgical mask. Since I always wear a KF94, I was worried I'd have to downgrade my mask, a problem that has happened in other hospitals. But I just quietly put the surgical mask on top of my KF94, and nobody stopped me or said anything. 

I had a short wait, then was taken to a pre-op room. I changed into a gown, and a nurse took my vitals and put an IV in my left hand. She also had me take 2 Tylenol to get a jump on pain relief. I've been trying to steer clear of Tylenol to help my liver situation, but figured it'd be okay to take a few doses for surgery.

One of the anesthesiologists, as she read through my medical notes and asked me questions, paused and said one sentence that actually meant a lot to me: "I'm sorry you've had to go through all this." I've seen a LOT of healthcare workers outside oncology, including imaging technicians and staff from cardiology, hepatology, GYN, and my PCP's office. Every time my medical history is reviewed, the person is generally kind and professional, but they have always stopped short of being compassionate or acknowledging that all the cancer treatment and complications might actually be taking some kind of toll on me - until today. I don't blame them, and I understand the need to stay objective and even stoic, but just having a medical professional look at my history and validate that it is a lot for someone to go through was comforting. (I should mention that my entire oncology team has always shown compassion and understanding, that's just one of many reasons why I appreciate them.)

Anyway. I got the anesthesia. One second I'm sitting in the hospital bed, being transported to the operating room, not even feeling drowsy, and then bam, the next thing I know, I'm feeling groggy in a post-op recovery bay.

There was no clock in my pre-op room, so I don't know if the surgery started on time at 7:30 AM. The GYN surgeon had estimated 1 hour, but Ken said she called him around 9:15. I don't know if we started late or if the surgery took longer than expected, but she said everything went fine. Ken said the surgeon told him I'd be ready for pick-up in about an hour, but I didn't get discharged until roughly 2 hours later, around 11:15. 

When I woke up, I noticed right away that I didn't have a mask on. I figured it was okay because I was in my own bay, my nurse was masked, and she had set out some water, apple juice, and biscuit-type cookies for me. Once I finished eating and drinking, I asked for my glasses, took a new mask out of my bag at the same time, and looked at the clock.

It was just after 10:30 AM, so I think I must have woken up around 10:15 AM. I'm guessing I stayed under longer than the GYN surgeon anticipated. I was in the PACU (Post Anesthesia Care Unit) for about an hour, with a dedicated nurse.

There was an ice pack on my abdomen, covering the three incision areas. Also, there were inflatable sleeves on my calves, I assume to prevent blood clots.

The nurse warned me that my shoulders might hurt, a consequence of air being pumped into my abdomen during surgery, to make room for the surgeon to perform the procedure! I don't see how air in the abdomen affects the shoulders, but indeed, my right shoulder started to ache in the car ride home, and later my left shoulder started to ache too. In fact, the pain in my shoulders made it very difficult for me to sleep that night. This very helpful page about BSO surgery says the shoulder pain should go away in a few days, and walking around will help.

Also, presumably because of that air (actually, I later saw in my online medical notes that it was carbon dioxide) my belly felt bloated.  The bloating caused a lot of discomfort and was also a factor in not sleeping well.

On the drive home, I used a small pillow to cushion my abdomen from the seat belt, a trick the pre-operative phone call nurse had recommended.

The anesthesia definitely hit me harder this time than when I had my double mastectomy. I was still groggy and nauseated when I was discharged, and it took several hours to go away. I even threw up as soon as I got home. (The nurse had anticipated this and had given me a barf bag for the ride home, though it was labeled "emesis bag," so I learned a new word!)

Once I was home and settled into bed, I noticed the area around my left incision was bruised, which was a new development. The bruise was about 4 inches across and dark purple. The PACU nurse hadn't warned me about that, so I was relieved to find bruising mentioned on this BSO informational page. She did give me 2 cold compresses, which I promptly put to work over the incisions.

Walking is difficult, but since walking helps the recovery process in many ways, I've been making an effort to get up and putter around the house a bit. 

After a while, I noticed an increase in mucus in my lungs. Moreover, it's hard to cough up because coughing makes my incisions hurt. I found this web page that says anesthesia can hamper normal breathing and cause mucus to build up in the lungs. Moving around and coughing should help. Interestingly, both the Memorial Sloan Kettering Cancer Center and the WebMD web sites mention an "incentive spirometer," but I didn't get one. I found this laparoscopic oophorectomy informational page that mentions "breathing exercises", then finally found a related page describing specific breathing, coughing, and leg exercises that I can do.

Overall, I'm doing alright. I am taking prescription-strength ibuprofen (600 mg), which keeps pain at bay as long as I take it on schedule. I've also been taking prescription-strength generic Colace (100 mg) to help with constipation. I can walk around slowly, standing a little hunched over. The only other thing worth mentioning is that it feels kind of hard to talk, like I have to talk slowly; I figure it's somehow related to the bloating and/or mucus in the lungs, and needing to take deep breaths.

6/15/22: Phone Calls

Before I had a chance to call my GYN surgeon's office this morning, to make sure everything is in order, the surgery coordinator called me!

She said I am all set for tomorrow, and she also shed some light on this whole "medical clearance" situation.

She said medical clearance is only needed if there's something concerning in my medical history, and the fact that I've seen a cardio-oncologist was likely what flagged me as needing it. Normally, the hospital would inform the surgeon's office about the patient needing medical clearance, and they would take care of getting it, but the surgery coordinator said no one told her, and moreover, she thought it was odd that the hospital would tell me directly, like usually it's something that happens behind the scenes, not something patients have to manage themselves.

Yesterday when I spoke with my oncology nurse after the cardiology appointment, she said she would reach out to the GYN surgeon's office to make sure they saw the cardiologist's notes, since she was basically just a middle man in all this. I realize now that my oncology office, and my oncology nurse specifically, were really going above and beyond by doing the job that the GYN surgery coordinator should have been doing. (My PCP office, on the other hand, was the least helpful of all.)

But I absolutely do not hold anything against the surgery coordinator, who sounded rather put out that she had been left out of the loop. She said she asked the hospital why she wasn't notified, and the person at the hospital seemed to say that they figured everything was all set because I already had an oncology appointment scheduled. But of course, the surgery coordinator knew that she would have been left holding the bag if I wasn't cleared. 

Maybe some people might think the surgery coordinator was being unprofessional by telling me all this, but I totally appreciated it!! I value accountability and transparency, and I feel better knowing what happened versus what should have happened. Having the full story made me feel like it's okay that I was overwhelmed by the last few days, because they objectively didn't go as smoothly as they should have, since I did fall through the cracks a bit. Once again, another clear reminder that we, the patient, have to be our own best advocate!!!! 

Anyway. The hospital was scheduled to call me between 2:00 and 4:00 PM, but they called me early at 1:45 PM. I'm a stickler for planning so I can't say I appreciated being called earlier than scheduled. Ha. They just confirmed my arrival time at the hospital, and also no food or drink after midnight tonight.

Oh, incidentally, I did get a notification from one of the online patient portals saying my covid test was negative. 

6/14/22: Covid Test + Cardiology Appointment

Today I found a good web page that explains QT prolongation. It's much better than the links in yesterday's post.

The short of it is, I don't require any more follow-up in cardiology, and I'm cleared for my surgery on Thursday! Phew. 

I started the day by driving to the surgery hospital for my covid test. 

I got there early, so while waiting for my appointment time, I called my oncology nurse and left a message about my cardiology appointment this afternoon. I was sure she could see the appointment in the online system, but she had asked me to call, and I found it reassuring to be in contact with someone who was basically tasked to help me manage this situation. 

The covid test took all of 10 seconds to administer. The nurse said the ordering physician will get the results. They'll call me if I'm positive, and probably won't call me if I'm negative. 

By the time I got home, I had just enough time to eat lunch before turning around and leaving for my cardiology appointment in the city. 

I gave myself what I thought was a ridiculous amount of extra time, but with a little traffic and a lot of time spent circling up and up the parking garage until I found open spaces, and then walking to the hospital, I got to the Cardiac Clinic just in time for my appointment.

When the medical assistant took my vitals, I was still feeling rushed from trying to arrive on time and stressed from driving in the city, not to mention anxious from just being there for a cardiac issue with my surgery on the line. She took both my blood pressure and my heart rate twice, giving me time to calm down in between. Then she did another EKG.

The cardiologist was all business, with a calm demeanor that probably serves him well in this field. He didn't tell me the QTc value, but he said it was "borderline" prolongated. Interestingly, in line with this article, he took the time to manually re-calculate the QTc. It was still borderline.

I find it noteworthy that in 3 EKGs, the leads on my legs were placed in 3 different places. On Friday (the EKG with prolonged QTc), the leads were placed low on my ankles. On Monday (the EKG with normal QTc), the leads were placed in the middle of my calves. Today (the EKG with borderline QTc), the leads were placed low on my calves, but above my ankles.

Anyway, the cardiologist asked me a bunch of questions about my own medical history and my family's. Do I ever pass out? Has anyone under 60 ever died suddenly and unexpectedly? He said he didn't think I have Long QT Syndrome, which is basically the only potential issue with a prolonged QTc. I just happen to have a slightly longer than normal QT interval.

I forgot to ask what would cause the prolonged QTc, since I didn't have it before. I was just 100% focused on whether or not I would be cleared for surgery. He said yes, I was fine to proceed with surgery, and no additional follow-up is needed either before or after the surgery, but I should schedule an appointment if anything changes, like if I start passing out.

I felt so relieved walking out of the clinic! I got back to my car and called the oncology nurse right away. She said she would contact the GYN surgeon's office and let them know to check my electronic medical record for confirmation of medical clearance. I hope that's that. Tomorrow the hospital is supposed to call, and I might call the GYN's office just to make sure everything's in order.

Once I got home, I checked the online patient portal. I'm glad I have access to my medical notes, because I learned a couple things that were not explicitly discussed during the appointment.

First, I hadn't asked the doctor what exactly my QTc was today, but the report says it was 461 ms, right in the borderline zone according to the QT prolongation article.

Second, the note said that the anastrozole and Lupron may be contributing factors. The cardiologist wrote, "Given her concurrent hormone suppression therapy, would be prudent to continue monitoring QT interval moving forward."

This was my first time hearing about any connection between my hormone therapy and the QT interval. I didn't find any connections when looking up Long QT Syndrome yesterday, but I did find some hits by searching for just "QT" and "Lupron" together. Turns out, Lupron can affect the electerical activity of your heart! Not only that, but QT prolongation is a known less common side effect of Lupron! The QT prolongation article also says that hormonal imbalances could be a cause. 

It seems to me that I am somehow prone to getting the less common but serious side effects of medications. First I got non-alcoholic fatty liver disease from Tamoxifen, now I've got QT prolongation presumably from Lupron. I'm reminded of what my original medical oncologist said, about how Asian cancer patients tend to respond differently to cancer treatment, perhaps in part because Asians are not well-represented in all the clinical trials where side effects are investigated. 

I'm wondering if I should be disappointed that my oncology team never warned me about these risks specifically. I guess I can't expect them to list every single side effect, and I don't think knowing about these less common outcomes would have affected my decision-making; since they are not common, I would have figured I'd be unlikely to get them, even if I knew about them. 

It also occurs to me, should I be upset that they didn't readily connect the dots between prolonged QTc and Lupron? Maybe they did, but the focus right now was figuring out if a prolonged QTc would affect my surgery. And since my surgery means discontinuing Lupron anyway, maybe it's moot. Looking ahead, I may try to ask for an EKG at my next oncology appointment, to see if the QTc returns to normal after stopping Lupron. 

6/3/22: Pre-Operative Phone Call

Mostly this phone call was about reviewing my medical history. The nurse asked me a bunch of yes/no questions about my health.

She gave me a few instructions on where to report and what to expect on the day of surgery. She also said I should expect another phone call the day before surgery with final instructions, like food and drink restrictions. 

Disappointingly, she said no outside masks are allowed in the hospital, so when I check in, I'll be given a new surgical mask. The fact that I will be required to swap out my high-quality KF94 mask for a lower quality surgical mask is unfortunate but not surprising, as I have heard this to be the policy in many, many hospitals. Maybe I should feel lucky that all my other appointments up until now have allowed me to wear a KF94.

Interestingly, she asked if I'll be seeing my doctor before the surgery, because apparently I need "medical clearance". I don't have a PCP appointment scheduled, but I do happen to have a regularly scheduled appointment with my medical oncology NP. She told me to call the NP's office and let them know I'll need "medical clearance" from this appointment. I have no idea what this "medical clearance" is but I just followed instructions and called the Cancer Center and left a message.

Finally, I'm not supposed to take any vitamins for 7 days before surgery. This is not a big deal at all, but I just didn't realize taking vitamins would matter.