6/15/26: Medical Oncologist Appointment

Today I had my annual oncology follow-up. My appointments are supposed to alternate between the medical oncologist and medical oncology NP, but for some reason, I was scheduled with the NP for 3 years in a row, so I hadn't seen my oncologist since 2022!

I first got a blood draw for a full panel of tests. I was a little surprised because I couldn't even remember the last time I had my blood drawn for an oncology appointment. At home later, I checked my records, and it was back in 2022 when I last saw my oncologist! Anyway, today I had to go to the phlebotomy department in the main part of the hospital; since my last blood draw, the small dedicated phlebotomy lab in the cancer center is now only used for limited purposes.

The very nice medical assistant who took my vitals gave me another surprise when she said my height is 5' 5". I thought I was 5' 5.5"! Again, I checked my records at home, and last year I was 5' 5.25". At the time, I probably chalked it up to a slight mismeasurement, but I can't ignore two years of declining measurements in a row. Yikes. Surely bone loss is to blame; more on that later.

The medical assistant also told me the doctor was running behind schedule, and indeed by the time I was shown to an exam room, it was 50 minutes past my scheduled appointment time. Then I had to wait at least another 15 minutes for my oncologist. But I didn't mind, I didn't have any other place to be. The way I see it, my appointments are relatively routine now, and other cancer patients probably need her attention a lot more than I do. Plus, I like the idea of a doctor spending as much time as necessary with a patient. I used the time to start this blog post, check email, etc.

While waiting in the exam room, with the door open, my medical oncology NP walked by and popped in to say hello. It was very quick but also very friendly, just enough time for her to ask about my kids and for me to tell her about my youngest graduating high school and heading off to college. When I finally saw my doctor, she was so pleasant and kind and spent maybe a good 30 minutes with me. I didn't feel rushed at all.

I was surprised - again! - when the doctor asked about my eye appointments; I didn't realize she would have access to the fact that I recently got an eye exam and was referred to an ophthalmologist for an "enlarged optic nerve". I super appreciate when all my doctors in the same giant hospital network can see each other's notes, but I know the ophthalmologist is not in that network. Maybe my oncologist just saw the referral from my PCP, who is in the same network? Who knows. However she got to see it, I do like the convenience and comprehensiveness of all my doctors being able to see my medical activity across specialties.

We talked about my various symptoms and side effects from menopause and hormone therapy, e.g., joint stiffness, neuropathy in fingers and toes, hot flashes (much reduced from initial frequency), vaginal dryness, and increased anxiety. I told her about the new neuropathy in my left toe, though at this point, I've pretty much just accepted that all the discomforts are part and parcel of having had cancer.   

My oncologist confirmed that it'd be difficult to separate which symptoms are from menopause, and which might be side effects of taking anastrozole, the difference being that side effects could potentially improve when I stop hormone therapy. (I've got 4 more years to go, for a total of 10 years of hormone therapy.) Anastrozole is an aromatase inhibitor, and she said there is one more medication in the same family that I could try, called letrozole. I previously took exemestane, and got switched to anastrozole to see if I'd have fewer side effects on it, which I did. My doctor said I could try switching to letrozole, if I want, just to see if side effects are even better, but I guess I sort of feel like I'm in a steady routine now, so I'm loath to rock the boat by switching medications. It's good to know it's an option though. 

As usual, I had a physical exam as well, which went fine.  

Finally, I am due for a bone density test (because aromatase inhibitors cause bone loss), so will call tomorrow to schedule that. My oncologist said to try to get an appointment before my next PCP appointment, so my PCP can see the results and talk with me about whether or not to start treating my osteopenia (which hopefully has not progressed to osteoporosis).

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.

8/25/24: I've Been Thinking About My Chemo Brain

I've posted before about having chemo brain, which can last years. I was previously least concerned about being unable to "find words", but now it's the symptom that bothers me the most, almost distressingly, as its frequency of occurrence has increased greatly.

Everybody has that experience of forgetting a word once in a while, when it's on the tip of your tongue but you just can't come up with it. This happens to me literally every day, multiple times a day. In fact, I'd say it happens any time I have any kind of conversation that goes beyond a few sentences. People with whom I'm speaking will generally graciously ignore my verbal bumbling, or chalk it up to aging, but I know a lot of people my age and older and the extent to which I can't produce the words I want is simply not typical.

This symptom, and chemo brain in general, sounds a lot like the "brain fog" that is often associated with long covid, and studies have actually linked the two.

My husband agrees that I am "not finding words" much more often compared to a few years ago, and I sometimes wonder if getting covid in December 2022 could have exacerbated the problem.

Recently, another possible factor has come to my attention. When I had both my ovaries removed, I knew that "increased risk of dementia and other changes in mental function" were possible, though my OB/GYN dismissed that particular concern based on lack of evidence, especially when weighed against the more immediate risks of breast cancer recurrence or ovarian cancer.

Now, a new study has come out connecting bilateral oophorectomy with reduced white matter in the brain. The article refers to other research that "found that patients who've had both of their ovaries removed before they hit menopause face a higher risk of cognitive impairment and dementia later in life."

But how much later? Is it possible that early signs of cognitive impairment might show up within a couple years? I got my ovaries out in June 2022, which means my post-oophorectomy period basically overlaps with my post-covid period. Might either or both these events have been a contributing factor to my increased inability to find words? 

Yet another consideration is my hormone therapy, which completely eliminates estrogen in my body. There's a lot going on between estrogen and the brain, and lots of research that studies it. I started taking an aromatase inhibitor right after finishing chemo, so again, those potential causes overlap, and also wouldn't explain the worsening of symptoms. Still, it probably doesn't help that one study found, "A pattern of decline in working memory and concentration with initial exposure to anastrozole was observed," with a caveat saying, "The longer term (> 18 months) effects of anastrozole on cognitive function remain to be determined." I am holding out just a little bit of hope that maybe I'll see some kind of improvement when I stop anastrozole in about 5 years.

Who knows. Without formal cognitive testing, including baselines, I'll never know for sure what's going on. It's just something I've been thinking about lately.

Suffice it to say, my medical history includes multiple things that could have negatively affected my brain function in very noticeable ways. It's just one more reason for me to continue to be covid-cautious; I can't do anything about having had chemo or a bilateral oophorectomy, and I choose to continue with anastrozole to help prevent cancer recurrence, but since every covid infection carries a risk of damage to the brain, I can try to preserve what brain function I have left by trying not to get covid again (by masking indoors, avoiding crowds, staying up-to-date with vaccinations, rapid testing before gatherings, meeting others outdoors when possible, using air purifiers and promoting ventilation with open windows where possible, monitoring wastewater data and staying informed, i.e., the type of things recommended by Yale School of Public Health).

6/4/24: 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.

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.

8/25/23: 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.

8/9/23: 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. 

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.

6/1/23: 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. 

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: Cancerversary

Actually, the 3-year anniversary of my double mastectomy was yesterday. Maybe it's kind of a good thing that I forgot and didn't realize the significance of the date until today, because it implies that the experience marked by the date is not occupying a huge place in my psyche?

Interestingly, to me, it feels like I've been managing my cancer treatment forever, so "3 years" sounds like a surprisingly short period of time. On the other hand, when I focus on just those words - "3 years" - then it strikes me as a long time. It's weird how time, something that is objectively measured, can feel so subjective. 

I also realized I haven't posted any photos in a while, so here are a few new ones.

This is me now.

I never did go back to wearing contacts after stopping during chemo, so I wear glasses all the time now.

I haven't cut my hair since I shaved it. I'm thrilled that it's grown back as thick and as black as before, especially because I know that for some people, post-chemo hair can grow back white or gray, or with a different texture. The top is still a bit thinner than it used to be, but it's the kind of thing that maybe only I can notice, so I try not to let it detract from the gratitude of having a full head of hair again.  

I like that it's long enough to help camouflage my flatness, but truth be told, probably 98% of the time my hair is up in a messy bun because of the heat of hot flashes. Since getting my ovaries out, the hot flashes have been stronger and more frequent. It finally dawned on me that maybe this is why so many women cut their hair short as they get older! 

Anyway, here are a couple photos of my port scar. 

I can't remember exactly when I stopped using the scar cream every night, but for months now I've been applying it maybe 3 or 4 times a week. At this point, I figure I'll just finish the tube and be done with it. When I first took these photos, I didn't think the scar looked any better, but when I compared them to my last photos from over a year ago, it does look better. Maybe the scar cream helped, or maybe it's just the passage of time. Who knows!

7/4/22: (18 Days Post-BSO) I'm Okay

The giant bruise near the left incision continues to get noticeably better, which is reassuring. 

The left incision area, however, is still a little swollen and tender. I've been taking ibuprofen just to help with the inflammation, and I keep wondering when I should stop.

I've noticed "new" bruising below my bellybutton. It's not really new because my doctor saw the area was bruised at my incision check appointment, but at the time I couldn't really see it. Now it's in the stage where, as it gets better, the color has spread and changed to light purple, green, and yellow. 

The pubic bruise is still kind of a mystery to me. It hasn't changed very noticeably; maybe it looks lighter and less defined? It still doesn't hurt or feel swollen to me. 

I can walk almost normally now, but it still helps to support my left incision when going up and down stairs, and if I'm trying to walk at a completely normal pace. I've resumed most of my usual household activities (except daily cooking), but I also feel I need to properly rest after exerting myself. It's not clear to me if I should still be icing the swollen and bruised areas, but I'll do it every now and then when I'm in rest mode.

Incidentally, I'm getting hot flashes again. It's an interesting observation, suggesting that my body really did have a not insignificant amount of estrogen, so that removing that amount clearly made a difference. 

6/10/22: Last Lupron + Medical Oncology NP Appointment + Phone Calls

I got my blood drawn. 

A super friendly new-to-me medical assistant took my vitals, then brought me to an exam room for my EKG. I changed into a gown (top only), and the medical assistant put a bunch of electrodes on my arms, ankles, and torso. I had almost forgotten that getting an EKG means more time spent attaching and detaching the electrodes and changing my clothes than actually getting recorded. 

Next I saw my medical oncology NP. Usually I have a long list of concerns, but today it just felt like we were touching base on a few known issues. No change in my side effects (slight neuropathy in first 3 fingers on both hands, tightness in joints), and they aren't so bad that they disrupt my activities of daily living. Actually, I've noticed I haven't had as many hot flashes lately, but I forgot to mention that.

My NP was very sympathetic about my upcoming surgery, but I assured her that I understand and accept the rationale, and I'm okay with it. It actually felt a little comforting to know that she was treating the surgery like a Big Deal, because I do think both my usual GYN and the GYN surgeon gave the impression that the surgery is No Big Deal. In a way, that's a good thing, because it implies that to them, the surgery is commonplace and nothing to worry about. Still, surgery is surgery, and I'm getting organs removed from my body!

My NP reiterated what my GYN surgeon has already said, which is that after the surgery, I should not expect to experience many new symptoms of menopause since my body has already gone through the effects of losing estrogen. 

During this appointment, some of my blood work results came in, and my NP was super excited to show me that my ALT and AST (the liver function tests) went down again! Not only that, but the AST actually fell to within normal limits!! Yay!! I've been making a real effort to exercise more, drink more water, drink less alcohol, eat better, and stay active after eating, but given the steady rate of decline of the LFTs, I'm guessing none of that really matters as much as the simple fact that I stopped taking Tamoxifen. But it's not all for nothing, because my NP commented that I look like I lost weight! I did lose something like 3-5 pounds, not enough to really be noticeable, but it's something. 

At the end of the appointment I asked if I was "all set" with that "medical clearance" the hospital wanted, but my NP didn't seem to know what that was all about. She wondered aloud if I should get a chest X-ray, and then decided it wasn't necessary at my age. I left feeling a bit uneasy about whether or not I was "all set" for surgery next week. 

I almost forgot that I still had to get my Lupron shot after this appointment. In a way it felt a little bittersweet seeing my treatment nurse for probably the last time. I mentioned that next week's surgery would make this my last injection appointment, and the nurse expressed encouragement and wished me luck. I was feeling a bit emotional about never seeing this nurse again, but I also felt silly because the nurse was pretty matter-of-fact about it, so I just kept the sentimentality to myself and cheerfully told her I've enjoyed talking with her at my appointments. 

On my way out, I scheduled my next appointment with my oncologist. It was supposed to be in 3 months but the earliest available was in 5 months. 

Back at home, I was still feeling unsettled regarding that "medical clearance", so I made some phone calls. First I called the hospital's Pre-Admissions Testing. They said if I need medical clearance, it's something I get from my PCP. I explained that the pre-operative phone call person said it could go through my oncologist, who I was already scheduled to see, but when I asked my oncology NP today, they didn't seem to know what it was all about. So then they said I should call the office of the doctor performing the surgery to find out if I'm "all set" or not. So I called the GYN surgeon's office, and the surgery coordinator did not know what kind of "medical clearance" was needed either! She said she didn't know if I was "all set" or not, but she'd put in a message with the doctor and get back to me next week. I expressed concern that this all might not get resolved in time for my surgery, and the surgery coordinator said, "We'll get to the bottom of this. Don't worry." So okay. I guess I won't worry! (Of course I will, but I will tell myself not to.)

Oh, one last thing. My blood work came back showing my estradiol as <5, which is where it should be. My NP said maybe they'd check it one more time after surgery, just for fun, but once the ovaries are out, the whole point is that we won't have to worry about the estradiol anymore. 

4/26/22: Medical Oncology NP Phone Appointment - I Need an Oophorectomy

Today's phone appointment was a follow-up to see how I'm doing on the anastrozole. I had printed out my list of side effects, but I ended up not mentioning the coughing and increased mucus. It's allergy season, after all, and it might not really be a side effect. 

Mostly, the bottom line is, I have a lot of side effects, but it's all manageable, and none of it limits my activities. My joint stiffness and hot flashes are worse than on Tamoxifen, but better than on exemestane. The dizziness is weird, but I haven't felt it in a couple weeks now. My NP said it's common for lots of side effects to develop around 2-8 weeks after starting a new medication, and then start to settle down after about 3 months, as the body adjusts. She also brought up vaginal dryness, which I hadn't really noticed except maybe some itching, which she said was actually a common symptom; she said she'd send me a list of products that can help. 

I thought that was it, the start of a potential stretch of stable, uneventful cancer care, but then she said, "Did you see your latest estradiol number?"

Ugh. I've been so focused on my LFTs that I totally forgot to check the estradiol from my last blood draw!

Turns out, my estradiol was 15. To be considered post-menopausal, which I need to be in order to take anastrozole, the estradiol should be <5. 

My NP said my medical oncologist already conferred with other oncology colleagues, and they agreed this is unusual. Their only guess is that the Lupron must not be working, but nobody knows why not. The point of the Lupron is to eliminate estrogen production by suppressing the ovaries, and since Lupron isn't doing it well enough, the consensus was to recommend I remove my ovaries. My NP will do some coordinating behind the scenes, and then she's supposed to call me back with next steps.

Incidentally, I mentioned that I never did hear from my hepatologist after seeing my FibroScan results online. I said I'm not really worried because I have an appointment scheduled this summer, but she said she'd check in with him to see if there's anything I should know before then. I appreciate her helping me out, even though hepatology isn't her department. 

To help me wrap my own head around everything, here's the whole hormone therapy / oophorectomy history:

• Fall 2019: My genetic testing showed I have 2 VUSes: one in BRCA2, which is linked to ovarian cancer, and one in PALB2, which may be linked to ovarian cancer. My oncologist did not recommend removing ovaries to prevent ovarian cancer, but my OB/GYN thought it was a viable option for multiple reasons: 1) to prevent ovarian cancer, 2) as birth control, and 3) to eliminate the need for monthly Lupron shots. At this time, an oophorectomy didn't seem necessary, so I didn't pursue it.
  
  
• 2020: Because my cancer was estrogen receptor positive, I needed hormone therapy to eliminate estrogen in my body. I got monthly Lupron shots (to suppress estrogen production in my ovaries) and was prescribed exemestane (a daily pill for post-menopausal women to block estrogen production in other parts of the body). The Lupron put me in a chemically-induced menopause, which allowed me to take exemestane.
  
  
• 2021: A couple blood tests showed my estradiol to be too high; my oncologist thought maybe the Lupron wasn't working as effectively since my ovaries started working again (after having temporarily stopped working during chemo). Since I couldn't be considered post-menopausal anymore, I switched from exemestane to Tamoxifen (a daily pill for pre-menopausal women to block the effects of estrogen on breast cancer cells), while still continuing with Lupron. 
  
  
• 2022: After a year of Tamoxifen, I developed non-alcoholic fatty liver disease. My oncologist took me off Tamoxifen and switched me to anastrozole (the same type of pill as exemestane, just a different drug). Since anastrozole can only be taken post-menopause, my estradiol would be monitored to make sure the Lupron is keeping it <5. My last blood test showed estradiol was 15, so the Lupron is not totally working, which means I can't be considered post-menopausal. The only pre-menopausal hormone therapy pill is Tamoxifen, which we already ruled out as an option. Now, having pretty much exhausted all other options, the only way to sufficiently eliminate estrogen production is to have an oophorectomy. 

4/2/22: More Anastrozole Side Effects

Lately, I've been feeling dizzy. I've always imagined "dizzy spells" to mean: a person feels dizzy while standing, has to sit down, and needs to remain still for a while to let the feeling pass. But what happens with me is, I will be standing still, moving around, or just sitting and eating breakfast - doesn't matter - and suddenly, without warning, I will feel a very brief dizziness, like a "shift" inside my head. It passes quickly. Sometimes that's it, and sometimes it's followed by a few more milder occurrences. Sometimes by many more milder occurrences. "Feeling dizzy" or "dizziness" is listed as a side effect of anastrozole, so I guess that's it.

Also, I'm having trouble sleeping. This is really nothing new; ever since I started cancer treatment, I have to get up multiple times a night because of a hot flash or because I have to pee. But lately, I've had trouble just falling asleep. Even when I'm tired, I will end up tossing and turning for quite a while before dozing off. And I'm definitely feeling more tired during the day than I used to. Both web sites linked above also list "feeling tired" or "unusual tiredness" as a side effect, so maybe it's related. 

Anyway, I've added these two items to my list of concerns for when I next talk to my medical oncology NP. 

3/19/22: FibroScan and Blood Work Results + Anastrozole Side Effects

I saw my FibroScan report posted on the online patient portal. I'm not entirely sure what the results mean, practically speaking, so I'm hoping I'll hear from my hepatologist, who can put the results into context. 

Here's what the report said:

CAP score: 395 dB/m 

Fibrosis score: 6.1 kPa

According to the Memorial Sloan Kettering Cancer Center, my CAP score means I have grade 3 steatosis ("S3"), which means more than 67% of my liver is fatty. The range for this score is 100 to 400 dB/m, so my number is quite high, and the report called it "severe steatosis".

The same web site categorizes my fibrosis score as "F0 to F1", which means "no liver scarring or mild liver scarring". Since the range is actually 2-7 kPa, and my score is on the high side of that, I figure maybe that means I have some mild scarring. 

I don't meet with my hepatologist again until August, but in the meantime, it sounds like I should try to adhere to the usual "healthy lifestyle" suggestions: lose weight, exercise more, eat a healthy and balanced diet, don't drink alcohol, drink more water.

Meanwhile, I got my blood drawn at my last Lupron appointment, so I also checked my LFT (liver function tests) results online. My ALT and AST continue to trend upwards, though they're still within 2-3 times the upper limit of normal, which this site calls "mildly elevated." I've been off Tamoxifen for about a month now, but maybe it will take a few months for these LFTs to settle down? I found this random Quora answer that says it can take 6-12 months to reverse grade 3 fatty liver.

Some good news is that my estradiol continues to be <5, so I'm still good for taking anastrozole (a post-menopausal medication). 

By the way, I have definitely noticed some side effects with the anastrozole. 

My joint stiffness has gotten worse again. It feels worse than when I was on Tamoxifen, but not as bad as when I was on exemestane. As usual, it's mostly in my fingers, and it's worst in the mornings when waking up. 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.

I'm still getting hot flashes. They seem less frequent than when I was on Tamoxifen, but more severe in that the heat feels stronger, though the duration is probably the same as before. 

One new thing I've noticed is an increase in mucus, in both nose and throat. I don't know if it's a side effect or seasonal allergies. Recently, I've had to purposely cough a lot to clear phlegm. It doesn't feel like an illness cough, though I've taken a couple at-home rapid antigen covid tests and they've been negative. I think I've forcefully cleared my throat so much that there's a spot in the middle of my breast bone that hurts when I cough. I'm not sure what to make of this, but will mention it to my medical oncology NP when I speak with her in April. All I've found is this site that lists "cough" as a side effect of anastrozole, and this site that lists "cough" and "cough producing mucus" as "less common" side effects.

12/24/21: I Checked My Lab Results Online

My estradiol was <5, which is good, that's what's expected while on Lupron.

A couple other measurements were out of the normal range, though. 

My "ALT" and "AST" numbers were both slightly higher than normal. These values are related to liver function, and this site says ALT and AST levels are considered "mildly elevated" when they are 2-3 times the upper limit of normal. Mine are only a little bit high, so I don't think it's problem, plus, thankfully, the online patient portal allows me to see the provider's notes, and my NP had already made note of the unexpected values and put some context around them; she wrote that she would call me (presumably after Christmas) and ask if I had recently taken Tylenol or had alcohol. In fact, I did have about 2 glasses of wine the night before!

My "Baso" number was also just above the normal range. Apparently, basophils are responsible for the histamines in allergic reactions. I still have a baseline runny nose, for unknown reasons; maybe it's seasonal or environmental allergies after all, who knows.

12/23/21: Lupron + Medical Oncology NP Appointment

Wow, I had such a nice appointment with my medical oncology NP today.

We started out just talking about the state of the pandemic, Christmas plans, kids in school. It sounded like we were pretty much on the same page about everything, which was reassuring because usually I feel like I'm the weirdo for being more risk averse than those around me. It occurred to me that maybe we would be friends if we had met in some other context, or maybe she is just very, very good at her job and making her patients feel comfortable!

We went over all my side effects, which now feel manageable and stable. I mentioned my hot flashes, very slight neuropathy persisting in the first 3 fingers of both hands, and waking up 1-2 times every night (because of a hot flash or having to pee). I also talked about how 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. I said my husband keeps telling me it's age-related, and I just need to stretch in the mornings, but she disagreed and said she's sure it's a side effect of the Tamoxifen.  

The NP had me change into a gown for a breast exam, which went fine.

She realized my standing order for lab work had expired a couple days earlier, so she put in a new order, and I got my blood drawn after the appointment. I'll check the online patient portal for results.

I forgot to ask when my next appointment will be. My last one was 6 months ago with my medical oncologist, so I am assuming my next one will be in 6 months with my medical oncologist, too. I guess I'll see what shows up in my online patient portal appointment list. 

After the appointment, and after the blood draw, I went upstairs for my Lupron shot. I got one of my old familiar nurses, which was nice, especially because she's the one who is the best at giving totally painless shots.

12/13/21: I Get Anxiety with My Hot Flashes

I noticed something about my hot flashes (presumably a symptom of chemically-induced menopause, thanks to the Lupron shots).

Moments before onset, I get a wave of anxiety. I don't like this at all, because I tend to have anxiety issues already (though not formally diagnosed). 

At first, I wasn't sure which was coming first - the anxiety or the hot flash? I thought maybe my anxiety was a trigger for hot flashes. And maybe that does happen sometimes. But most of the time, I am just going about my business not feeling anxious in the slightest, and suddenly I will feel super anxious, and then moments later, I get a hot flash. 

My hot flashes are brief, but frequent. I get them pretty much every hour while I'm awake. I get the wave of anxiety, and then I feel super warm. I always wear short sleeves under a sweater now, so I have to take off the sweater and put my hair up in a ponytail. I also try to keep a hand fan close by, to help cool me down. If I take off layers and use a fan, I usually don't sweat. It passes after just a couple minutes, and then I'll put the sweater back on and let my hair down. 

I also get 1-2 hot flashes every night. I have to throw off the covers for a while, and then I'll huddle back under them after it passes. 

I guess in the scheme of things, these hot flashes aren't like a huge problem. But they sure feel disruptive.

11/14/21: I Got a Pfizer Booster (Day 2)

A couple weeks ago, I realized it's been 6 months since my COVID-19 vaccine 2nd dose, and I saw that the CDC specifically mentions "history of cancer" as a risk factor for eligibility. I hopped onto the CVS web site and scheduled my booster for the first available date at the most convenient CVS for me, which was 10 days out. They happened to be giving the Pfizer booster, which was fine with me, I didn't have a preference.

Yesterday, I had an appointment at 1:00 PM, but I was still 3rd in line when I arrived. It was fine; everyone was pleasant, the operation ran smoothly, and I wasn't in any kind of rush.

I went about my normal activities for the rest of the day, then started feeling especially tired around 8:00 PM. My arm also started to feel mildly sore at the injection site.

I went to bed, but woke up in the middle of the night with my arm feeling very sore. I had a headache, and chills, and my whole body felt weak and achy. I was super tired but had a hard time getting comfortable enough to fall back asleep. This morning I took my temperature, and I've got a fever in the 100-101 F range. All in all, so far, not as bad as my side effects with the 2nd dose, but worse than my side effects with the 1st dose.

11/29/21 Edited to Add: Just for the record, I ended up staying in bed all day, then woke up the next morning feeling completely and totally refreshed!! It was the best night's sleep I'd had in a long, long, time.