12/17/23: Cost Update

Our insurance coverage year starts on July 1, re-setting our deductible, which is why we had to pay so much for the August appointments.

As usual, I'm listing here the amount billed, which gets added into the total cost, and the amount we paid, with insurance. 

1/13/23: GYN Appointment: $315.00 (Covered by insurance) 
1/30/23: Anastrozole (generic): $545.99 (Covered by insurance)
3/28/23: Blood Work for Hepatology Appointment: $227.63 (I paid $44.68)
4/4/23: Hepatologist Appointment: $326.00 (I paid $326.00)   
4/4/23: Hepatologist Hospital: $109.00 (I paid $109.00)   
4/29/23: Anastrozole (generic): $545.99 (Covered by insurance)
6/1/23: Medical Oncology NP Appointment: $326.00 (I paid $278.70)   
6/1/23:  Medical Oncology NP Hospital + EKG: $235.00 (I paid $147.02)   
6/26/23: Cardiologist Appointment: $508.00 (I paid $86.04)   
6/26/23: Cardiologist Hospital + EKG: $283.25 (Covered by insurance)
7/27/23: Anastrozole (generic): $545.99 (Covered by insurance)
8/8/23: Stress Test Cardiologist: $347.00 (I paid $262.14)   
8/8/23: Stress Test Hospital: $3,147.00 (I paid $1,956.98)

Total cost to date: $471,487.06
With insurance, cost to me: $14,860.55

12/15/23: I Spoke with My Genetic Counselor

On 11/17/23, I emailed my genetic counselor to check in on the status of my VUSes (variants of uncertain significance). I also wanted to give her an update on my own medical history, including last year's oophorectomy and the genetic testing results of some relatives. The last time I had contact with my genetic counselor was over 2 years ago, so I first checked online to make sure she's still a member of the Cancer Genetics team. I sent a brief message to just confirm that I was emailing the right person.

By 12/4/23, I hadn't gotten a response, so I followed up with another email to the same address. Since the first email had not been returned as undeliverable, I figured the address was still valid. I was polite and tried not to be pushy, since there was no urgency. 

To review, I have 2 VUSes on the BRCA2 and PALB2 genes, both of which are linked to breast cancer and ovarian cancer. Originally, it was important to follow up on these VUSes because if one or the other turned out to be a pathogenic mutation, I'd be at increased risk for ovarian cancer and would want to consider getting my ovaries out. But since I ended up getting my ovaries out for other reasons, the status of the VUSes don't actually matter much for me anymore. Still, if either of the VUSes are ever re-classified as harmful, then that information would certainly be useful for my kids to know, especially my daughter.

Anyway, by 12/14/23, I still hadn't heard back, so I sent a message to the general Cancer Genetics email address. The very next day, my genetic counselor called me! 

She apologized profusely for not responding earlier. She said she did most of the research into my VUSes on the day she received my email, but she also made inquiries and had to wait for responses. Then she just forgot to email me back. Not sure why my first follow-up email also managed to fall through the cracks, but it was yet another good reminder that a patient needs to be their own best advocate. 

Later in the day, I logged into the online patient portal to see the genetic counselor's notes on our conversation, to make sure I didn't miss anything. This post includes information and quotes from both the phone call and her notes.

Back to the phone call. I actually have 4 VUSes total, but the other 2, on CDKN1C and MSH2, aren't on genes related to breast cancer, so mostly I've ignored them. My genetic counselor said the MSH2 gene is linked to a number of cancers, mostly colon cancer, but since it's still classified as a VUS, she's not worried about it. She didn't mention the CDKN1C VUS, and I didn't bother asking.

She explained that there's a clinical database called ClinVar where laboratories report their results. There were 4 laboratories that reported on my PALB2 variant, and all 4 labs continue to classify it as a VUS.

The BRCA2 variant, however, was more complicated. Of the 6 labs that have reported on my BRCA2 variant, 5 still classify it as a VUS. A 6th lab, however, now considers it pathogenic, meaning they think this variant is harmful and could cause cancer. But. "Unfortunately they did not submit any supporting evidence for this interpretation. Given this is a non-US based laboratory which is not CLIA-certified, it is difficult to assign any significance to this interpretation." Basically, there is no documentation on what kind of standards this lab uses, so there's no way to know what level of confidence to place on their report.

Notably, though, this 6th lab is in China. I remembered what my first oncologist said about race in clinical studies, how in the U.S. the vast majority of patients are white, so results may not apply well to me, a Chinese person. I asked the genetic counselor if she thinks the fact that this lab's data represents patients who are almost certainly all Chinese means I should put at least some weight on their results? She conceded that their data set probably includes more Chinese people than all U.S. labs combined, but with no way to assess the legitimacy of the lab's results, she advised going with the majority opinion.

Moreover, she said she reached out to another lab called Myriad Genetics, which has extensive experience with BRCA1 and BRCA2 genes. I don't understand why they weren't included in the list of labs reporting in ClinVar, but she said there's been a few recent publications referencing my specific variant, and still Myriad considers it a VUS, based on their own data studying this variant in 17 families. Essentially, they just haven't seen this variant tracking with an increased risk of cancer.

She also mentioned that my particular type of variant can be hard to understand, as it consists of just a single nucleotide change. If I'm reading my genetic testing results correctly, I think my BRCA2 gene has a "T" where there should be an "A". Apparently, the question that needs to be answered is, given this variation, is the gene still functional?

As for what all this means for me. She said that if the variant was reclassified as pathogenic by a reputable U.S. lab, we'd have a conversation about taking action. I asked her what kind of "action" would be recommended, and at the same time told her about my oophorectomy. I could actually hear the relief in her voice, she clearly considered this good news. Getting my ovaries out would be the most drastic action on the table, and since I already did that, it was basically one less thing to worry about.

We also talked about what a pathogenic BRCA2 mutation would mean for my daughter. She said my daughter would be recommended to start breast cancer screening at age 25, including yearly mammograms and yearly MRIs, offset so that imaging is done every 6 months. I did see a similar recommendation online, but also found a site that recommended starting the imaging at age 30. Whatever the age, it sounds so burdensome to me, I hope she doesn't have to start so young. When she's older, she'll have to decide for herself if she wants to get genetic testing done; if she doesn't have the same mutation, she could be spared some of that early imaging, but if she does have the mutation, it could introduce additional anxiety and fear.

If the variant remains a VUS, my genetic counselor said my daughter would be expected to start breast cancer screening 10 years before the age I was diagnosed. (I was diagnosed at age 43, but I found the lump at age 42.) This is the same recommendation my PCP gave me, though of course my daughter will have to discuss all this with her own healthcare providers when she's older.

Finally, we talked about the genetic testing of my relatives. There is no known cancer on my mother's side, but quite a few cases of cancer on my father's side. I had previously given her the genetic testing results of a paternal cousin who doesn't have cancer, and now gave her the results of 2 other paternal cousins, also without cancer. I'm not really sure how useful the results are, but I found it interesting that we don't have any overlapping VUSes. She said getting the results for my father and my one surviving aunt who had breast cancer would actually be very helpful. Specifically, she said my dad's results "will clarify whether either or both of these variants were paternally inherited... even if he does carry 1 or both of the variant it is not indicative of causation." Regarding my aunt, if she "does not carry either of these variants, that certainly suggest that either or both of these variants may not be the cause of early onset breast cancer in the family." In which case, even if my daughter did inherit the same VUSes, it might be less scary. 

My genetic counselor said she would try to streamline the genetic testing process, so any relative of mine in the area who wants genetic testing just has to have a brief telehealth genetic counseling appointment with her, and she'd ship them a saliva kit, which they can do at home and then mail back the sample.

Phew. That's a lot of information. And a lot of uncertainty.

10/17/23: I Got a Novavax Updated 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.

8/25/23: I Have Back Pain

I tagged this post with "hormone therapy" but I don't actually know that it's a side effect. I hope it is, because that would mean it might go away or improve after I stop taking anastrozole. 

First, some clarifications. In the past, I've talked about this side effect as joint-related. On 12/23/21, while on Tamoxifen, I wrote:

My joints always feel especially tight, particular when standing up after sitting for any length of time (doesn't even have to be very long); I just feel like an old person, hobbling along until my joints loosen up.

Then on 3/19/22, after I started anastrozole, I wrote:

My joint stiffness has gotten worse again... I also have it in my legs, and its worst when standing up from a sitting position. After standing up, I usually have to walk around for a few moments before I can actually stand up straight and walk normally.

Looking back, I don't know why I characterized it as being a problem with my "joints" and "legs" when now it seems clear that being unable to stand up straight after sitting could be a lower back problem. I never took any human physiology classes, so what do I know. Also, I'm in my 40s and didn't think I was old enough to face back issues, but apparently it's normal to start noticing back pain around age 40!     

So I guess a better word to describe my symptoms might be "musculoskeletal", which incorporates muscles, bones, joints and connective tissues.

Anyway. About a week ago, I did some yard work and overdid it, so instead of needing just "a few moments" to stand up straight again after sitting, it took on the order of minutes. I paid extra attention to how I was sitting, being careful to sit up straight and support my lower back, and made sure to avoid bending over, using my knees instead. I moved around slower, but it was fine. 

Then yesterday, I forgot to pay attention while sitting down to breakfast, and when I got up - OMG. I mean, OMG!!!! I felt a sharp, shooting pain in my lower back that was unbearable. Not only could I not straighten up, I thought my legs would buckle under me! I hobbled my way to bed and managed, through great pain, to lie down. Then I lay there practically motionless for 2 hours, while my son brought me ibuprofen and cold packs. 

I never quite understood what it meant when people say they "threw out their back", but I am pretty sure that's what I did.

I spent all of yesterday mostly lying down in pain. This morning I was thrilled and relieved to have no trouble at all getting out of bed, walking around, and using the bathroom. But I know I need to continue babying my back, for who knows how long. I will follow this advice and these tips, and when I think I can handle it, will incorporate these exercises into my routine. I even ordered a standing desk to minimize my sitting.

Of course, these back problems could just be normal, age-related developments. But, muscle pain, and specifically back pain, could also be side effects of anastrozole. I'll add it to my list of concerns for my next oncology appointment.

8/16/23: PCP Appointment

I haven't been blogging all my PCP appointments because they aren't directly related to having cancer. But at my annual check-up my doctor did say something relevant, so I figured I should mention it. 

I told her about trying magnesium glycinate for hot flashes and anxiety, how I think it "may" have helped, and how I stopped and ended up not feeling either symptom while on vacation, but am getting them again now. She didn't seem too keen on supplements in general, suggested I could have experienced a placebo effect when taking the magnesium, and she said straight up, "I wouldn't take it," especially since I'm monitoring my heart these days. She then dove into a discussion of my recent stress test results, and I forgot to go back to ask what connection magnesium has with the heart.

Back home, I Googled it and found this article, which warns about getting too much magnesium, especially in the form of supplements. Both my doctor and the article said to first try getting more magnesium into my regular diet. I kind of wish my doctor had included measuring my magnesium level in my blood test, but she didn't, and I didn't think to ask for it. 

My doctor also didn't say this outright, but I inferred that she thinks I should try to maintain my vacation mindset all the time. I guess that is what I am trying to do with my efforts in meditation and exercise and finding little joys in each day (like having a quiet cup of coffee in the sun on my back patio).

So, I will be putting the magnesium glycinate on hold for now, and make a note to ask my cardiologist about it next time.

8/9/23: My Cardiologist Called Me

She called to discuss my stress test results and said overall everything looks fine, she did not see anything alarming in the results. Yay!

She did mention that my heart function, i.e., my ejection fraction of 50-55%, was on the lower end of normal. She noted that it was comparable to my last measurement of 57%, so it's "normal" for me and not necessarily an indication of poor heart function; as long as it stays over 50%, I should be fine. I pointed out that my pre-Herceptin baseline was 63%, and she agreed that the decrease could have been caused by Herceptin, but there's no reason to think that it will go down any further. 

She confirmed we'll have an appointment next June (already scheduled), and at that time, she will probably schedule me for another echocardiogram to be done as a 1-year follow-up, just to make sure my ejection fraction is stable.

8/9/23: Magnesium Update

Back in June, I took magnesium glycinate for a few weeks (240 mg daily, with breakfast), and I really felt like it was helping! I definitely had fewer hot flashes and fewer anxiety episodes. When I did feel anxiety, it seemed more subdued. 

One interesting thing, though, is that I still got 2-3 hot flashes a day (way less than usual), but when I got them, they felt stronger than before. I always figured I was lucky because, even if I got a lot of hot flashes, at least they were brief and mild; I usually did not sweat. With the magnesium, though, I would just start to sweat, and then the hot flash passed. 

I might consider increasing my dose to 3 pills a day (360 mg daily), just to see if it helps with the lingering hot flashes and anxiety. I wouldn't expect the anxiety to go away completely, since some of it is situational and related to mental health, not just menopause; but maybe the hot flashes could improve even more?

I admit, one reason I don't want to increase my dose is because magnesium glycinate is expensive. It's like $30 per bottle. If I take smaller doses, each bottle will last longer.

Anyway, I actually stopped taking the magnesium for most of July because we traveled a lot and it would've been just one more thing to remember. We went to a subtropical climate, where it was very hot and humid outdoors all the time, and indoors it was always very comfortably air conditioned. Surprisingly, I did not have any hot flashes or anxiety at all! I wonder if it's hard to have, or feel, a hot flash when your body is already very hot and sweating; indoors, the air conditioning was perfectly cooling, unlike at home, where we keep the thermostat higher to save in energy costs. Plus, because of the heat, I was careful to stay sufficiently hydrated all the time, which probably helped too. Even my situational anxiety was non-existent, I think because I was in vacation mode and having so much FUN! 

So, we're back home now, and I've noticed my hot flashes and anxiety have returned. But now that I know it's possible for my body to not have them, I'm going to work harder on my mental health by trying to walk and meditate even more regularly. 

Oh, did I mention I was trying meditation? I actually subscribed to the Insight Timer app. I found a couple people whose guided meditations I like; my favorite is David Gandelman. It does take a lot of time and trial and error to find personalities and styles that fit with what I like, especially when there is such a fine line between meditation and alternative healing. 

8/8/23: Cardiology Stress Test

Yesterday I had my cardiology stress test, which was recommended at my last cardiology appointment.

My cardiologist had told me that the doctor on duty to attend to the test may not be her, and it wasn't. It was another woman, who was masked! She was the only other person in the office, besides me, to wear a mask. 

I was told to avoid caffeine for 2 hours before the appointment, and to wear sneakers and comfortable clothes.  

There were 2 people in the room with me the whole time, a nurse (I think, she may have been a medical assistant, I'm not sure) and a technician. They were both very nice, but not talkative, which was okay with me. 

They had me change into a johnny from the waist up. The nurse put a bunch of leads onto my torso, all of them connected to a belt they had me wear, so the wires didn't get tangled. They did an echocardiogram and an EKG and also took my blood pressure, for baseline values.  

Before we could start, we had to wait for the cardiologist to come in and give the okay. The nurse told me the doctor was in with another patient, and we actually waited for like 15 minutes, in almost complete silence. Haha. It was fine. I really don't mind when doctors are late, because I always figure, if I'm the patient the doctor is with, I'd want them to take the time to make sure I got the care I needed.

The stress test was divided into 3-minute intervals, designed to quickly increase a person's heart rate while they walk. There was a treadmill right next to the examination table, and in front of the treadmill was a big poster showing a numerical scale, with numbers corresponding to descriptions like "very light" and "very, very hard". During each 3-minute interval, the nurse asked me to describe the level of exertion I felt, and she also took my blood pressure while I walked.

First, the treadmill was set to a slow speed and small incline.  For this first part, I think I said the effort felt "light".

After 3 minutes, the treadmill incline and speed automatically increased. I described the exertion at this point as in between "fairly light" and "fairly hard" - it wasn't either, it just felt fine.

After 3 more minutes, the treadmill incline and speed automatically increased again. This time, I think I said the exertion felt "fairly hard". Towards the end of this 3-minute interval, the cardiologist said I was doing well above average! 

The nurse asked if I wanted to do the next level, which many people don't even get to. She said the setting would be very fast, and some people choose to jog it. I was curious to see how fast the last setting would be, so I said yes to trying it. At the 3-minute mark, the treadmill incline and speed increased again. I did it as a very fast walk, which I described as "very hard"! They had me do it only for 2 minutes, instead of 3.

After a total of 11 minutes, they stopped the treadmill, and I was instructed to keep walking until the treadmill came to a complete stop. Then I had to lie down on the exam table and roll onto my left side as quickly as possible so that the technician could do an echocardiogram while my heart rate was at its peak. The nurse also took some EKG readings and measured my blood pressure.

The cardiologist looked at all the data in real time and said nothing jumped out at her as problematic. She was very reassuring, but was also careful to say that it would take a few hours to review the details, and she would send the report to my cardiologist.

Back at home, later the same day, I was able to see my report in the online patient portal. The word "normal" appeared a lot, so I hope it means everything is fine! The only thing I really noticed was that it said my ejection fraction is 50-55%. Back when I was getting regular echocardiograms while on Herceptin, my baseline pre-Herceptin ejection fraction was 63%, and my last measurement after stopping Herceptin was 57%. So, it does appear that my ejection fraction never fully recovered from Herceptin. I'll have to remember to ask my cardiologist if this is something I should be concerned about.

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!

6/17/23: I've Been Taking Magnesium Supplements

As discussed with my medical oncology NP, I've started taking magnesium glycinate supplements. I'm hoping they will help decrease my hot flashes and anxiety, byproducts of the surgically-induced menopause that I'm in, thanks to my oophorectomy and hormone therapy. 

She recommended 300-400 mg daily. The product I bought at CVS says 1 serving is 3 capsules, which equals 360 mg total. Because magnesium supplements can sometimes cause diarrhea, my NP suggested taking it every other day to start, to make sure I don't have any digestive side effects. 

Always one to err on the side of caution, I decided to start with 1 capsule (120 mg) every other day. After about a week, I didn't notice any problems, so I moved to taking 1 capsule every day. 

After a few days of that, I also didn't notice any benefit, so I increased the dose to 2 capsules (240 mg) every other day, and 1 capsule on the alternating days. After a few more days, I had no diarrhea, and I think my anxiety and hot flashes did improve? It's hard to say, but it seemed less frequent, and it actually felt kind of subdued, like more in the background and less front-and-center. 

So now I am taking 2 capsules (240 mg) every day. This is less than the amount recommended by my NP, but I figure there's nothing wrong in trying to take the lowest effective dose, and it gives me some wiggle room in case I want to increase the dose later. 

Part of me does wonder if the supplements are truly helping, or if there is some kind of placebo effect, or wishful thinking. I'll keep it up and see what I notice over time.

6/13/23: Phone Calls to Schedule Cardiology Appointment

Ugh, phone tag.

The cardiology department called my cell phone, but I missed the call because I had the sound turned off, which is not unusual when I'm at home.  

I called them back, but was immediately routed to voice mail. I left a message with my home phone number.

I did get a call back, but they called my cell phone again! Luckily I suspected they might, and had kept my cell phone near me with the sound on just in case. 

Anyway, I was surprised that they were able to schedule my appointment for just a couple weeks from now. I was expecting to have to wait months for an appointment, but I guess the referral from oncology pushed me up the queue. 

I have to say, I was a little disappointed that the person who left the message, who I think was the same person I spoke with, was very curt. She was all business, spoke quickly, made no pleasantries, did not review or confirm this department's location on the hospital campus. I might even say her voice was devoid of kindness. It was jarring compared to the friendly staff I usually encounter, but OH WELL. 

6/9/23: My Medical Oncology NP Called Me

She conferred with my previous cardio-oncologist, who was able to look at my EKG results and determine that there's "nothing urgent". But, they still think it's a good idea for me to be seen by a cardiologist, so I should expect a phone call to schedule an appointment.

As it turns out, though, my original cardio-oncologist, who I liked a lot, now only sees patients in the suburban satellite office one day a month; the rest of the time she is in the city. Since I don't like driving into the city, I opted to see a new cardiologist who is now available at the same location as my Cancer Center. (This location did not used to have any cardiologists on site, otherwise I would have gone to them from the start.)

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. 

5/20/23: Cost Update

I actually haven't checked my insurance claims online lately, I guess because my appointments are fewer and less frequent these days. But here are some old costs that I hadn't posted yet.

Our health insurance coverage year starts on July 1, re-setting the deductible, so all these appointments starting last summer required out-of-pocket payments. We have a high deductible health plan, and since my cancer-related appointments have been tapering off, I wonder if we'll even meet the deductible this year. 

I thought it was particularly ridiculous that there was a hospital facility charge for the phone appointment with my hepatologist, but at least I didn't have to actually pay anything.

7/12/22: GYN Surgeon Appointment: $192.00 (I paid $140.02)
8/5/22: Anastrozole (generic): $545.99 (No cost to me)
8/16/22: Blood Work for Hepatology Appointment: $113.00 (I paid $64.28)
8/24/22: Hepatologist Phone Appointment: $260.00 (I paid $260.00)
8/24/22: Hepatologist Phone Hospital: $105.00 (No cost to me)
11/3/22: Anastrozole (generic): $545.99 (No cost to me)
11/10/22: Medical Oncologist Appointment: $326.00 (I paid $316.30)
11/10/22: Medical Oncologist Hospital + EKG: $889.00 (I paid $450.73)
11/10/22: EKG Technician: $27.00 (I paid $20.25)
1/9/23: BreastCare NP Appointment: $221.00 (I paid $190.72)

Total cost to date: $464,025.21
With insurance, cost to me: $11,649.99

4/4/23: Hepatology Appointment

I had to wait 30 minutes for my appointment today, which really didn't bother me (I like to think that if a doctor is behind schedule, it's because they're giving patients the time they need); but what did irk me was the white board that showed my doctor as being "on time". What's the point of having such a white board if it's not accurate!? 

The appointment itself took all of 10 minutes, maybe less. He basically brought up my chart, saw that my LFTs are normal, and then spent the rest of the time patiently summarizing my hepatology history and asking if I had any questions. It sort of felt like he was enjoying having a simple, straightforward, "everything is fine" appointment!

As expected, since all indicators point to a healthy liver, I don't need any more follow-ups in hepatology. Yay! That's one less thing to worry about.

3/28/23: Blood Draw and LFT Results

I have definitely crossed some kind of inflection point in my cancer journey. Up until now, I had gotten so used to frequent medical treatment that appointments felt typical and routine. Today, for the first time in a long time, I went to get my blood drawn in advance of a hepatology appointment next week, and I felt like it was an aberration from my schedule, an inconvenience. Even though my actual feelings were kind of negative, I figure it's a positive development overall, a sign that cancer is not such a central fixture in my day-to-day life anymore. 

Anyway, I looked up my results online, and my LFTs (liver function tests) are essentially back to my pre-Tamoxifen values. Yay! (Numbers in red were problematically out of range.) 

DATE       ALT  AST  AROMATASE INHIBITOR
03/28/23   19   20   Anastrozole
11/10/22   23   22   Anastrozole
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
07/24/20   19   19   Exemestane

Hopefully this means next week's hepatology appointment will be my last.

(Book Review) Hormone Repair Manual: Every Woman's Guide to Healthy Hormones After 40 by Lara Briden

This book isn't about cancer, and it only touches upon menopause that is induced medically or surgically. Still, I decided to include it here because it talks about how important estrogen is to all different parts of the body, which is relevant because my hormone therapy has actually eliminated all my estrogen production. Here is my 2-star review as posted on Goodreads, followed by some additional thoughts.

This book was written by a naturopathic doctor. I am a strong believer in science and evidence and data, which means I do not generally subscribe to naturopathy or other forms of alternative medicine. I do, however, acknowledge that the human body is complex, and there is still so much we don't know, which means there may be some aspects of alternative medicine that really do work, and we just haven't done the studies yet. 

I appreciate that the author did not try to replace conventional medicine. In the introduction, she explicitly asked the reader to "speak with your doctor or pharmacist about possible interactions with your medical conditions or medications" (p. viii) when trying her recommendations. I also liked that she included "How to speak with your doctor" sections in which she provided helpful language and wording that can be used to bring up topics with medical doctors.  

I think the average, healthy woman turning 40 will find valuable information in this book, and I want to emphasize that my rating is a reflection of my personal experience reading it. Here's why I picked it up: While in my early 40s, my treatment for hormone-positive breast cancer involved eliminating estrogen from my body, which meant taking medication that put me into medically-induced menopause, and then later getting my ovaries removed, which put me into surgically-induced menopause. I have experienced all the usual symptoms of menopause, but the most common suggestion for managing symptoms is to get hormone replacement therapy (HRT), which is not an option for me because it would completely undermine my breast cancer treatment. So, I am looking for natural remedies to manage symptoms of menopause. 

As it turns out, surgically-induced menopause is quite a bit different from natural menopause, and I was discouraged when the book stated early on that "surgically and medically induced menopause...can produce stronger symptoms than natural menopause and almost always requires estrogen plus progesterone therapy" (p. 9), which I already know is contraindicated for me because of my hormone-positive breast cancer. Just a few pages later, I was encouraged to read, "If you don't want to take hormone therapy, that's perfectly okay because there are other options for many symptoms." (p. 17) I did manage to come away with some helpful suggestions, mostly from Chapter 5 "General maintenance for perimenopause and beyond," Chapter 7 "Rewiring the brain: help for hot flashes, sleep, migraines, memory, and mood," and Chapter 10 "What comes after."  

The writing was straightforward, and the content was conveniently broken into easily digestible chunks. Still, I think the information could have been organized better; the author frequently restated the same information and constantly redirected the reader to other chapters, making the text feel disjointed and repetitive. I read the book cover-to-cover because I wanted to know everything, but perhaps this book would best be used more as a reference, where you skip around and read only the sections that are immediately relevant to you. Incidentally, the author referenced Professor Jerilynn C. Prior so often that I wondered if maybe I should go straight to the source and read her works instead!

I would actually rate this book 2 1/2 stars, but since Goodreads doesn't allow for half-stars, I rounded down to 2. I was put off when I read that "the only time estrogen plus progesterone therapy is truly needed is for the prevention of long-term health risks associated with early or medically induced menopause." (p. 128) The word "needed" irked me; given my medical condition as described earlier, even if I "need" hormone therapy for long-term health, I am absolutely not a candidate. The author only mildly dialed back her statement about 10 pages later when she acknowledged, "If you have a personal or family history of breast cancer, you will probably be counseled to avoid estrogen therapy." (p. 139) I guess people with a history or high risk of breast cancer who experience early/medical/surgical menopause are just considered an exception case, and I felt like the message to me was: Hmm. You don't fit into any of the standard boxes. Looks like you are now doomed to poor health with "an increased risk of osteoporosis, heart disease, dementia, and premature death." (p. 140) (For the record, I was aware of these long-term risks associated with surgical menopause before I had my ovaries removed, but they were outweighed by the more pressing risk of breast cancer recurrence.)

Also, I wasn't comfortable with the way the author made assumptions about what my doctor may or may not know, e.g., when she wrote, "Your doctor thinks progesterone's only job is to protect the uterus, but it has many other benefits." (p. 138) Moreover, for almost the entire book, every time she mentioned talking to "your doctor", I imagined a patient talking to their primary care physician or a gynecologist, but it wasn't until late in the book that one of her "How to speak with your doctor" suggestions included, "Should I have a referral to a gynecologist to discuss this possibility?" (p. 227) The realization that gynecologists were not already implicitly included in all previous references to "your doctor" shocked me! I guess it does not go without saying that if you have concerns about menopause or menstrual health, a gynecologist would be a great place to direct questions; if insurance is a hindrance, look for a Planned Parenthood near you.

---

Some additional thoughts:

I've always understood that getting Lupron and removing my ovaries were forms of ovarian suppression, a type of hormone therapy that eliminates most of the estrogen in my body so hormone-positive breast cancer can't feed on it. I also know that taking an aromatase inhibitor pill (exemestane, and then anastrozole) finishes the job of estrogen elimination by stopping estrogen production in places other than my ovaries, a condition that does not occur in natural menopause. I don't know if I thought random cells were just making estrogen for fun, but it's only after reading this book that I now realize that the aromatase inhibitor is depriving my heart, brain, liver, muscles, and other tissues of the estrogen they need to function properly.

Because this book is based on naturopathy, I made sure to follow up on this idea with a search for corroborating evidence from a reputable source, which confirmed:

"Although the roles of estrogens in gonadal organs are well understood, recent studies have begun to demonstrate that localized estrogen production plays tissue-specific roles, with or without dependency on circulating estrogen. The cell- and tissue-specific actions of estrogen and ERs are directly involved various age-related diseases. Nevertheless, it remains unclear how the local synthesis of estrogens and their respective receptor functions are controlled in normal aging. We believe that estrogens are no longer just sex hormones, but important therapeutic targets for preventing diseases as disparate as osteoporosis, heart disease, and neurodegeneration."

Well, my oncologist has said that I should expect to take an aromatase inhibitor pill for 10 years total, so I guess I can hope that when I stop, when my various tissues are able to produce estrogen locally again, maybe some of my menopause symptoms will improve, and maybe some organs or systems will be able to function better, in ways I don't even know. 

1/23/23: New Stretches Helping with Neuropathy in Right Toes

To address the neuropathy (numbness and tingling) in the last two toes on my right foot (which recently started feeling like my sock is wet, but it's not), my oncologist had suggested stretching. 

My OB/GYN and GYN surgeon both seemed to think it's possible that the neuropathy could be related to having had poor body positioning while recovering from BSO surgery. To me, this potential connection to lying down made me think that any "pinched nerve" must be in the area of my hips or back. 

So, I'd been doing full-body stretches, the kind I used to do in dance class growing up. Mostly, these stretches were variations of sitting on the ground with my legs either extended together straight in front of me, or spread out to either side, and elongating my back while bending at my waist and reaching for my toes. Generally speaking, I think stretching can only help, but they didn't seem to help this particular issue.

The other day, out of the blue, it suddenly occured to me to stretch my legs specifically. I started doing the types of stretches I used to do when I was on the track & field and field hockey teams in high school, ones that isolated the calves, quadriceps, and hamstring muscles. To my surprise, these helped! The wet sock feeling is gone, and the neuropathy feels very much reduced in my pinky toe. 

At first I felt a little sheepish that it took so long to make this discovery. But when I thought about it, why should I have known? I'm not a physical therapist! None of my doctors gave me any specific recommendations or directions, so it's not like they knew either. 

Anyway, this is an encouraging development. I'll keep up the stretches and hope for continued improvement, or at least for things to not get worse. 

1/13/23: OB/GYN Appointment

Today's appointment was an annual check-up, but I figured I'd include it in this blog because it's my first time seeing my regular OB/GYN after getting my ovaries out.

First, she reviewed my medical history since the last appointment. She saw the oophorectomy surgery in my medical records, but had not seen the Tamoxifen and hepatology-related stuff, so I caught her up and explained how that led to removing my ovaries. Without knowing that background, I think she at first assumed that my oophorectomy was elective, since we had previously discussed that option.

(It's interesting to me how my different medical providers all seem to gather different information from my records, even though they're all in the same hospital network.) 

After going over everything from last year, she asked if I had any questions. I asked her if she thought the neuropathy in the last 2 toes on my right foot could be a symptom of menopause? At this point, I would describe the sensation most like this: it feels like my sock got wet around those toes, but when I check my sock, it's dry. But it also still feels like the sense of touch is subdued in those toes, similar to how my chemo-induced neuropathy feels in my fingers, as I described to my medical oncologist recently. Anyway, my OB/GYN didn't think it sounded like menopause. She said it's possible it could have resulted from how my body was positioned during recovery from surgery (similar to what my GYN surgeon said), in which case, she said it could still improve, though she did not elaborate on how or why.

(Meanwhile, I Googled the "wet sock" feeling, and was surprised - and somewhat relieved - to find some references. If my toes still feel weird by the time my next PCP appointment rolls around, I might ask about whether or not I should see a neurologist, or maybe even a podiatrist, since the links I found were posted by foot specialists.)  

Anyway, the doctor did a brief breast exam and also looked at my oophorectomy scars, then did the internal exam. She said everything looks fine, I don't need any other follow-up besides my annual check-up. Yay! At this point, she asked me again if I have any more questions; notably, she didn't make any signs of leaving until after I said no. 

I think that's actually what I appreciated most about this appointment, how the doctor asked me multiple times if I had any questions, and how she didn't appear rushed when asking. It really made me feel like she wanted to help me if she could, rather than me feeling like I am monopolizing the doctor's time or being a "difficult" patient by asking questions.

1/9/23: NP Appointment

Today's appointment was my annual check-in with the Breast Center.

I think it took all of 5 minutes! Maybe 8. Definitely not 10.

I was impressed, again, that my NP had read enough of my file to know that I had switched from Tamoxifen to anastrozole. We talked briefly about that, which led me to mention my oophorectomy in June, which she had not seen in my records, for whatever reason. She said she hadn't ever heard of Lupron not working, and I said my oncologist had given me the same impression, since she had called it "a little weird" and couldn't explain it. 

After going over everything that happened last year, she said she hoped everything else is going well. I said yes, other than getting covid over Christmas! I didn't expound upon my covid illness, I just said I'm better now, and optimistic that my medical situation might finally become stable.

She did a clinical breast exam, and said my double mastectomy scars are healing really well, specifically mentioning that the "dog ears" (the extra skin at the outer ends of each scar) look better, i.e., smaller. I said I do think my scars are less bumpy than before, especially around the dog ears, and she said that probably means there's less scar tissue. She asked if I massage the area, because that would help. I said I don't do it on purpose to help the scars, but my underarms still frequently feel numb and tingly and tight (particularly on the right side), so I do now have this funny habit of rubbing the area any time I'm just sitting around watching TV or using the computer. She joked how my kids are probably like, "Oh, that's just mom, rubbing her armpits again!" Haha. Apparently, though, all that rubbing is good for healing, so great!

I was relieved when she said everything looked fine. I wasn't anticipating any problems, but there's always that small part that is fearful of recurrence. 

She said I'll have one more appointment with her in a year, and then that'll be the end of my 5 years of post-diagnosis follow-ups! I honestly can't believe it's almost been 5 years... It sounds like a long time, but it feels too short because so much has happened and I can't believe my surveillance window is close to ending. Again, I didn't ask what happens after that; I suspect they will cut me loose, and I hope that by the time next year rolls around, I'll feel ready for that step.

Throughout the appointment, I think I spoke very matter-of-factly about everything, which perhaps gave the NP the impression that I accept and understand the whole of my situation. I think I do, and I never really considered that that might be unusual. I can't remember her words verbatim now, but the last thing she said to me was something like, "Well, you definitely have a good attitude, and that's, like, 99% of doing better." I'm assuming she used the "99%" number metaphorically, but I was immediately struck by how much that one sentence echoed the message in the book I just read!

(Book Review) Radical Remission: The Nine Key Factors That Can Make a Real Difference: Surviving Cancer Against All Odds by Kelly A. Turner

Here is my 2-star review as posted on Goodreads, followed by some additional thoughts on how I related to the book personally.

This book was mentioned by a friend who was diagnosed with glioblastoma brain cancer. Facing a bleak prognosis, she refused to resign herself to fate and has committed herself to defying the odds. This is not the type of book I usually read, however, when faced with the possibility of imminent death, I can understand the desire to grasp at all possible sources of hope, and I was intrigued.

The premise is fascinating: there are real people whose medically diagnosed cancer disappeared with no known medical reason, so let's study them and try to figure out what happened. Where the book falls short, for me, is how the investigation does not actually look for scientifically supported reasons for recovery, but instead relies almost entirely on each person's opinion on what they think caused their cancer to go away.

First, if you are the kind of person who absolutely never believes in ghosts, don't even try to read this book. There are no ghosts here, but for this book to even be readable, you have to be open to the idea that something might possibly, could be real, even if it defies all reason and there's no scientific explanation. You don't have to buy into alternative medicine, or believe in the paranormal, to get something positive out of this book, but you do need to take everything with a grain of salt.

Now, I am 100% a believer in conventional medicine and science, so I read most of this book with an attitude of, "Wow, that's interesting, not sure I believe all the details, but how amazing that that person is still alive!" The author does not exactly advocate for alternative medicine, in fact, she stated unambiguously that "most people will need conventional medicine to outrun cancer." (p. 9) But right off the bat, in the book's introduction, it's clear that she believes in alternative medicine, since her husband is a traditional Chinese medicine practitioner and studied "an esoteric form of energy healing." (p. 5) When telling the stories of survivors, she gave validity to "[t]he notion that a cancerous tumor is simply a buildup of stuck energy," (p. 94) and she reported matter-of-factly on the various alternative therapies people used, like Reiki or other forms of "energy healing", without any commentary regarding the controversy surrounding those methods.

In fact, it's that lack of transparency that led me to rate this book 2 stars. One of the featured survivors is someone who credits Brazilian John of God for curing his brain tumor. It was a very compelling account, so of course I immediately Googled John of God. Turns out, he's a convicted sex offender! The allegations first surfaced in 2018, and this book was published in 2014, so the author is off the hook for that particular oversight, however, James Randi, known skeptic of paranormal claims, discredited John of God in 2005. I think the complete omission of any reference to documented efforts to expose him as a fraud is downright negligent and detracts from this book's credibility. The author only hinted that John of God may not be legitimate when she wrote that the power of John of God's healing center "could simply be the placebo effect; in other words, our sheer belief that something powerful happens at John of God's center could have caused us to have a deeper meditation experience." (p. 250)

Another thing I wasn't fond of was the author's decision to soften the outlandishness of John of God's healing methods by using carefully chosen words. Though many online articles refer to him succinctly as a "psychic surgeon", the author described John of God as having "the ability to leave his body and go into a trance, thereby allowing the spirit of a higher being to enter his body and perform energetic healing work." (p. 237)

Not all the stories were as off-beat as the one involving John of God, but many of them had alternative medicine elements. Ultimately, I felt conflicted by the personal stories included in each chapter. On the one hand, they were very inspiring and would certainly give hope to a cancer patient with a poor prognosis; on the other hand, all the alternative medicine therapies were beyond belief, if you ask me.

Despite all that, if you can disregard the parts that you find unbelievable, there are valuable insights in this book that would benefit any cancer patient, regardless of prognosis. The nine "key factors" that radical remission patients share all sound very reasonable:

1. Radically Changing Your Diet
2. Taking Control of Your Health
3. Following Your Intuition
4. Using Herbs and Supplements
5. Releasing Suppressed Emotions
6. Increasing Positive Emotions
7. Embracing Social Support
8. Deepening Your Spiritual Connection
9. Having Strong Reasons for Living

Only two items are physically related to your body: changing your diet and taking supplements. While some diets and supplements may be more well-founded than others, at least the author periodically reminded readers to consult their doctors, e.g., "Remember, always speak to your doctor first in case your fast needs to be medically supervised." (p. 28)

If you're like me, you may be surprised that exercise is not on that list. Most health guides lead with diet and exercise, and throughout the book, I kept wondering why exercise was not singled out, especially since it was certainly mentioned in passing, e.g., "Thanks to a combination of yoga, hiking, and walking, [John] now feels like he's in the best shape of his life" (p. 39) and "[Jenny] also continued with the same daily exercise regimen she had created for herself years earlier." (p. 127) It wasn't until the very end of the book (p. 282) that the author revealed that exercise was not included as the 10th key factor because many patients were too weak to exercise when they first turned to alternative therapies, presumably either because of the cancer itself or due to side effects of having tried conventional treatment like chemotherapy. This explanation is fair, but I just wish she had said it up front at the beginning, so I didn't have to spend the entire book wondering why exercise was being glossed over.

The remaining items all fall under mental and emotional health, and even at face value it's easily conceivable that they each would have a positive effect on healing.

Every chapter concluded with actionable items that a person can do to put into practice the concepts outlined in that chapter. These suggestions were generally sensible and doable and essentially just useful advice for maintaining good mental health. In the end, it's these "Actions Steps" that made the book worth the read, in my opinion.

---

Some thoughts on my personal experience:

I was never given a terminal prognosis, so I can't speak to that situation. What I do know is, going through any cancer diagnosis and treatment is difficult, and I don't think anyone doubts that having good mental and emotional health - as supported by the book's "Action Steps" - is beneficial for the healing process.

I did not purposefully employ all the techniques offered in this book, but in retrospect, I think my experience did incorporate some aspects of many of the ideas.

For example, I didn't "radically change my diet", but I did eat more vegetables and less sugar, and I drank more water and less alcohol.

While "taking control of my health" did not mean turning to some kind of alternative therapy, I did do a lot of research on my own, and had strong ideas of what I thought my treatment should look like. I was relieved when the regimen proposed by my oncologist lined up with what I had already read.

I suppose listening to my body - being active when I had some energy, and allowing myself to rest when I felt tired, as advised by my physical therapist - would count as "following my intuition."

I didn't set out to "release suppressed emotions", but I did make a conscious effort to not hold a grudge against anyone who ghosted me during my cancer treatment. (Some people really don't know what to do or say, so they do and say nothing.) Relatedly, I absolutely did "embrace social support" and appreciated those who offered it.

I also did make a concerted effort to "increase positive emotions" by "purposefully making time every day to do something that brought [me] joy" (p. 172), whether it was watching a TV show I like or having a quiet cup of coffee in the sunshine in my backyard.

I won't go through every "key factor", but suffice to say, I did see pieces of my own experience reflected in this book. Were they active components of my recovery that contributed to my healing as much as surgery, chemotherapy, targeted therapy, and hormone therapy? Probably not as much as, but who knows, maybe they did play some role.

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!