8/29/25: Cost Update

By the time I had my annual oncology and cardiology appointments in June, at the tail end of our July-to-June insurance coverage year, we'd finally met our deductible, which means those appointments were fully covered. 

The only other cancer-related medical charges I had were for anastrozole, which thankfully is always fully covered. 

So for this update, I'm only listing the amount billed / retail price (which gets added to the "total cost"), since the cost to me was $0.

10/24/24: Anastrozole (generic): $545.99 
1/22/25: Anastrozole (generic): $545.99
4/18/25: Anastrozole (generic): $545.99
6/5/25: Medical Oncology NP Appointment: $273.00
6/5/25: Medical Oncology NP Hospital: $181.00
6/24/25: Cardiologist Appointment + EKG: $353.00
6/24/25: Cardiologist Hospital + EKG: $504.00 
7/19/25: Anastrozole (generic): $545.99

Total cost to date: $481,186.34
With insurance, cost to me: $16,908.63

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.

6/5/25: Medical Oncology NP Appointment

Today's appointment was a full year after my last oncology appointment, and I have to say, it felt different. Cancer somehow seemed less close, like I can now imagine being in a mental place where cancer might feel like something "in the past". It's not something I can ever really forget - my missing breasts are a constant reminder - but maybe it could be more like "something I went through" rather than "something I'm going through".

Anyway, my NP greeted me with a big hug. She asked all about how my kids are doing, and what our summer plans are. It felt almost like catching up with an old friend, except it was all one-sided about me, though she does sometimes drop bits and pieces of information about herself in the course of our conversations. (For example, I know our families enjoy the same types of board games.) I expect to be cut loose from oncology appointments once I'm finished with 10 years of hormone therapy, and I anticipate feeling kind of sad about "losing" this semi-personal relationship. 

Of course we did get around to actual medical stuff. She brought up my last bone density test results. Yes, the numbers are getting worse, but she spoke positively about how they haven't crossed the osteoporosis threshold yet. She recommended I increase my weight-bearing exercise by wearing a weighted vest (like 8-12 pounds) when walking, which her own doctor recommended for her as well.

Other than that, I basically reported no change in my hormone therapy / menopause side effects, as described in my post for last year's appointment. 

My next appointment is in another year, and it will be with my oncologist. It's typical to alternate appointments between the doctor and NP, and I have no idea why they kept scheduling me with the NP in recent years, but I didn't mind since I like and trust her just fine. I haven't seen my oncologist since 2022, so it'll be almost 4 years by the time I do see her! I wonder if I'll be able to tell if she really remembers me personally, or if she'll just be going off my medical file.

9/13/24: Cost Update

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

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

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

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

6/25/24: Cardiology Appointment

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

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

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

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

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

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

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

6/4/24: Medical Oncology NP Appointment

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

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

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

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

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

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

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.

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

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.

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.

8/8/23: 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!

6/1/23: 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.

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!

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. 

8/24/22: Hepatology Appointment

I dare say today's phone appointment was a pleasant conversation!

The doctor carefully reviewed the up-and-down trend of my LFT results over the past year. He said my current results are "completely normal" and indicate normal liver function!

I asked if that means I no longer have fatty liver disease? He said yes, given my BMI and LFTs, I can say I do not have fatty liver disease. 

I know by now that doctors never order tests to confirm normal results, but I figured I'd ask anyway if I should get another FibroScan. He said sometimes, imaging results are "consistent" with fatty liver, but when a biopsy is performed, there's no fat. The FibroScan also looks for scarring, and the important thing is that my prior FibroScan showed little to no scarring. Since everything now points to normal liver function, there's no need for a FibroScan. 

I was impressed that the doctor spent a surprising amount of time reviewing my hormone therapy regimen, even asking about my ovary removal and side effects. I told him that my side effects on anastrozole (mostly just joint stiffness in my fingers, since other symptoms like hot flashes and vaginal dryness can be attributed to menopause) are worse than when on Tamoxifen, but better than when I was on exemestane, and I consider them manageable. He emphasized the importance of finding the right balance between treatment and side effects; he didn't say it outright (presumably because these medications are squarely in my oncologist's domain) but it's clear to me that since Tamoxifen was the probable culprit leading to my liver problems, I'm unlikely to have a recurrence of fatty liver as long as I can withstand the side effects of other medications and stay off Tamoxifen. 

I had one final question about whether or not to worry about my ferritin number still being a little elevated. Because my ferritin was very high (538) around the same time my LFTs were high, and it has since decreased to only being a little high (202), the doctor said it's likely related to the fatty liver, and he's "not concerned".

I'll have one final follow-up in 6 months just to make sure everything is still normal.

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