12/30/21: My Medical Oncology NP Called Me

My NP called to discuss the results of my blood work.

I already saw my results online, but I played dumb as if I hadn't. I just wanted to hear how she would present the results, assuming a clean slate; I guess I'm a little afraid that if I let on that I already know something, they might assume I know more than I do, and I'll miss out on some piece of information. 

Anyway, she confirmed the estradiol number is good, so they may not check it again for another year.

She said some numbers regarding liver function were a little high, and asked if I had taken Tylenol or had any alcoholic drinks prior to the blood draw. I told her about having a couple drinks the night before to celebrate the start of school vacation, and she said the lab results are definitely consistent with having had some alcohol. Just to be sure, they will check again when I go in for my next Lupron appointment, and I should make sure not to drink alcohol for 3-4 days before getting blood drawn!

What I find interesting is that it's not generally instructed to not drink alcohol before a blood draw, which to me implies that a properly functioning liver should result in "normal" lab numbers even if the patient had a drink or two the night before. It's not like I drank a whole lot, it was really only 2 glasses of wine, I think. Apparently, both chemo and Tamoxifen can affect liver function. I don't have any of the symptoms of liver damage, but I wonder if maybe my liver now just has to work a little harder than it used to.

The NP didn't mention the "Baso" number, so I guess I won't worry about it. 

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.

10/29/21: Lupron

After today, I think I will stop blogging every Lupron appointment. I'll still update the "By the Numbers" sidebar, but there's obviously not much worth reporting at these appointments anymore. 

I guess mostly the Lupron posts just illustrate how I really can't "put cancer behind me" since I am still getting hormone therapy, and I am still going to the Cancer Center on a regular basis.

Today, pretty much everyone I interacted with was new enough that none of them were around when I was getting chemo. I think I've mentioned it before, that kind of lonely feeling of remaining in some place when everyone else has moved on. Oh, well. Everyone is nice enough, but I don't have that comfortable feeling anymore of being known. 

10/1/21: Lupron

I was in and out in under 15 minutes today! 

I wanted a flu shot but they aren't giving them out yet. Instead of waiting another month, I think I'll get it at my town's flu clinic.

9/3/21: Lupron

These appointments always seem to take half an hour now. That's fine, it's still pretty short, all things considered. Usually the waiting area has 0-2 other people besides me, but today there were 4. I had a longer wait than usual before being called, and both the medical assistant and the nurse were new to me.

8/6/21: Lupron

Another unremarkable visit, which is good. It's kind of hard to believe that monthly shots are now such a routine part of my life. I had to wait almost half an hour again today, but that's okay, I always try to leave the entire morning free after an appointment, just in case of delays. 

7/19/21: I Emailed My Genetic Counselor

Today I checked in with my hospital's Cancer Genetics department. I called the same number I used last year to speak with a genetic counselor, and a recorded greeting said the whole department is working remotely. I could leave a message, or else send an email to an address provided. Email sounded great!

In the email I mentioned the name of the genetic counselor I spoke with last year, and the same person emailed me back. It was only afterwards that I remembered that I had already exchanged a couple emails with her last summer, and could have emailed her directly. I'll try to remember that for next year.

Anyway, she said she looked up my VUS-es (one on the BRCA2 gene and another one on PALB2) in all the clinical databases, and they are both still categorized as variants of uncertain significance. So, no new information. It would be a relief if they turned out to be harmless variants, but I guess them being VUS-es is still better than them being cancer-linked mutations for sure.  

7/15/21: I Checked My Insurance Claims Online

Finally my appointments seem to be slowing down. As usual, these costs are added into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year.

3/18/21: Medical Oncology NP Appointment: $481
3/18/21: Medical Oncology NP Hospital + Lupron: $676.16
4/12/21: Tamoxifen (generic): $228.99
4/16/21: Lupron: $571.16
5/14/21: Lupron: $571.16
6/10/21: Medical Oncologist Appointment: $326
6/10/21: Medical Oncologist Hospital (Including Blood Work) + Lupron: $1,541.16
7/8/21: Tamoxifen (generic): $228.99

Total cost to date: $427,196.61
With insurance, cost to me: $8,254.63

7/9/21: Lupron

The only interesting thing about today's appointment was that it took over half an hour because apparently my doctor forgot to put in the medication order. So the nurse called both the doctor and the NP, then had to wait for them to respond and put in the order, and then we had to wait for the pharmarcy to send up the Lupron. 

7/3/21: (1.5 Years Post-Chemo) Hair Update

I can't believe it's been 1.5 years since I finished chemo. It feels much closer. I am finally now - 1.5 years later - starting to feel like "myself". 

A huge part of that is because my hair continues to grow in. At first I was worried that it was coming in too thin, because I still had a "bald line" in the back similar to when I was losing my hair during chemo. Thankfully, as my hair gets longer, it's also been coming in thicker.

7/3/21: (6 Months of Using Scar Cream) Port Scar Update

I've been using the same scar cream for 6 months now, pretty much every night without fail. I guess the scar itself seems less delineated, but overall it still looks messy to me. I don't know if the scar cream is really helping or not, but at this point I figure I'll just use up the tube and be done with it. 

Here are some photos. There were only a couple weeks between the last 2 pictures, but the color seemed to change quite a bit, so I'm including them both.

Incidentally, the scar is on my left side, even though the bottom two photos make it look like it's on my right side! The bottom two pictures were taken with a new cell phone, before I realized I had to turn off mirror image selfies.  

I am now mostly resigned to just having an ugly scar. My clothes usually hide it anyway. And if it doesn't, I just have to keep this meme in mind:

6/15/21: I Checked My Lab Results Online

My estradiol number came back as "<5". I think this is what is expected, showing that the Lupron is sufficiently suppressing estrogen production in my ovaries. 

I originally switched from exemestane to Tamoxifen because the estradiol number wasn't low enough, but even though the number appears to be fine now, I think my doctor figures I should just stay on Tamoxifen, since I haven't had any significant issues with this regimen. I think I'm okay with this decision; exemestane might be slightly more effective at preventing recurrence, but I definitely have fewer side effects on Tamoxifen.

6/10/21: Lupron + Medical Oncologist Appointment

I expected to have blood drawn today to check the estradiol number, but there wasn't an order for it when I checked in. As it turned out, my oncologist decided during my appointment that we should check the estradiol again, so I got my blood drawn after seeing the doctor, before getting my Lupron shot. The results should show up on the online patient portal later. 

During my appointment, I told my oncologist about one new concern. About a month ago, I noticed that a spot on the right side of my torso felt bruised, but when I looked, there was no bruise. Poking around, I could feel a round bump that felt tender when touched. Was it a bone? An organ? Was it something to worry about? I laid down on the examing table, and the doctor spent a good amount of time feeling around. She said she definitely could feel the bump, but she wasn't sure what it is! 

On one hand, it's disconcerting when the doctor doesn't know something. On the other hand, I do appreciate her honesty. She said it might be a "floating rib" - one of the lower couple ribs that don't connect to anything in front - and then she Googled it right there in the office. She suggested we keep an eye on it, and if it gets worse or continues to be worrisome, maybe she'd order a CAT scan. But in the meantime, I should try not to poke around at it, which might be aggravating it unnecessarily.

I told her that I am aware that maybe my worrying has a psychological component. I've been hypervigilant about my body for a couple years now, first in finding the breast cancer myself, then in trying to keep tabs on the many side effects of treatment. After all this time, it's like I'm looking for things to feel wrong. Plus, the typical aging process and Lupron-induced menopause are confounding factors, reminding me that I shouldn't even expect my body now to feel like it did pre-cancer. Anyway, my oncologist said all that sounded perfectly normal, and I appreciated that she didn't make me feel like a hypochondriac.

Anyway, I also reported that I've been getting hot flashes again. I hadn't been getting them for a while, but they're back, and I wonder if the hot weather is a trigger. Interestingly, I think eating sugar is a trigger; at least, I seem to get hot flashes any time I eat the fudge I got for Mother's Day. 

For the record, the first three fingers on both hands still feel very, very mildly numb and tingly. I never notice it anymore unless I tap my thumb and fingers together, so it's just something I've accepted as permanent. My joints still feel stiff sometimes, especially in the mornings, but it doesn't interfere with my daily activities, so it's also not something I worry about anymore.

She said since there aren't any treatment-related issues, we can stretch my next appointment out to 6 months instead of 3. I remember when 3 months between appointments made me feel a little nervous, but now I think I'm okay with it. I'm ready to put more distance between me and cancer treatment. 

Finally, I got my Lupron shot. The nurse was one I've had before, but the shot felt like it was in the wrong place! The location was much higher than where it's usually given, closer to my hip than actually in my butt. I didn't say anything, but as soon as I got home, I Googled, "What if a shot is given in the wrong place?" I found this Quora entry, with one answer that includes a helpful image showing the safest place in the butt for a shot. Apparently, the place I got the shot today looks to be more squarely in the safe area, all the other shots were probably on the low side!

5/14/21: Lupron

I saw another new nurse today. She said she usually works at the main hospital in the city, but sometimes works per diem at my location. She was especially thorough in asking me if I had any concerns or questions or new symptoms, if I needed any new prescriptions or additional appointments, if I was eating well and exercising and taking care of my mental health. It seemed a little much, but I have to admit, after the last few appointments feeling so routine and unremarkable, it was nice to have someone appear to take an interest, even if she was just doing her job.

The hospital pharmacy was slow in sending up my Lupron, so I had to wait about half an hour for my shot. The visit wasn't as quick as usual, but everything went fine, and the nurse was good at giving a painless injection. 

Besides this appointment, I happened to notice over the last couple days that my chest doesn't feel quite so numb as before. It's still numb in areas all across my chest and armpits, it just feels somewhat less weird. But I honestly can't tell if it's actually getting better, or if I'm just getting used to it. 

I stopped doing daily physical therapy exercises a long time ago, but I definitely still need to stretch my arms regularly, or else I start to feel some tightness, particularly in the muscles surrounding my underarms, and my right shoulder blade. I don't know anything about the musculoskeletal system, but I do find it interesting how my surgery has affected all sorts of muscles, not just those in my chest. 

4/16/21: Lupron

I used to feel a sense of purpose going into the Cancer Center, like fighting cancer was my job. Now I feel sort of sad, like the persistent threat of recurrence is a burden I can't get away from. 

I expected to have my blood drawn today, to check my hormone numbers, but they didn't mention an order, and I didn't ask. I guess there's nothing urgent about it, I can ask at my next oncologist appointment.

The medical assistant who took my vitals was yet another person who was new to me, but the nurse who gave me my shot was my former chemo nurse. It's been months since I last saw her, and it felt a little weird, like we used to be so familiar and now we're not so much. I mean, it's not like we were friends, but certainly I used to talk to her about a lot of emotional things, and today it was just regular chitchat. 

Regarding my covid vaccine, my arm feels mostly better now, it's just a tiny bit sore if I touch the injection site. 

4/15/21: Day 4 of Moderna Vaccine 2nd Dose Side Effects

My right arm is still a bit sore around the injection site. It's still warm to the touch, and a new rash has appeared. It seems mild, just a blotchy redness. 

4/14/21: Day 3 of Moderna Vaccine 2nd Dose Side Effects

What a difference a day makes! I woke up this morning feeling a whole lot better. Almost all symptoms from yesterday are gone. My arm is still a bit sore, and the injection site feels warm to the touch, but at least I can use my arm normally again. 

I think it's interesting that my reaction to the second dose was a lot more severe than with the first dose, but it didn't last any longer. I feel about the same today as I did on day 3 after the first dose. 

4/13/21: Day 2 of Moderna Vaccine 2nd Dose Side Effects

Wow. I definitely feel worse than last time. After the first dose, the worst of it came on the night of the shot, and then the second day I felt gradual improvement. This time, I feel worse today than I did yesterday. 

I'm still super cold. I'm still super tired. My arm is still super sore, and I can't lift my arm above my head. Those are all the same side effects I had with the first dose. 

Additionally, though, I actually feel weak, especially in my legs. Plus, some muscles in my neck, back, and legs feel achy. In the early afternoon, I had a bit of a headache. I took my temperature and had a fever of 102 F! So I went back to bed. 

After a couple hours sleeping, the fever didn't go down. I felt awful. I took two Tylenol, and it's kicking in now, I feel a lot more comfortable. I'm hoping a good night's sleep is all I need now. 

4/12/21: I Got My 2nd Dose of the Moderna Vaccine

I got the exact same nurse as last time! I wasn't sure at first - it was hard to tell behind the mask - but then she confirmed she was the person who gave me my first dose when she recognized her own handwriting on my vaccination card. This location runs a relatively big operation with about a dozen stations, so it felt like a remarkable coincidence. 

She started to prep my left arm for the shot, then asked if I had recently scratched myself in that area? I took a look and saw a small red streak just where the shot would go. I said I have no idea how that happened! She said it looks like I scratched myself with my opposite hand, like maybe a fingernail took off a bit of skin, but it did look kind of "rashy", with a few tiny red dots. She said it would be fine to give the shot in my left arm, but she didn't want me to later think the existing streak was a rash in reaction to the vaccine. I decided to get the shot in my right arm then, so it's easier to identify a new rash if I do get one. She said some people actually think the soreness goes away sooner when the injection is given in the dominant arm, because using the arm and keeping it in motion seems to help. Who knows. I figure it's just a couple days, I'll be okay. 

So far, the side effects are about the same as last time: I feel very tired and cold, and my arm is sore. I fell asleep super early, but then had trouble sleeping because my arm hurt so much.  

3/19/21: I Checked My Insurance Claims Online

As usual, I'm adding these costs into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year. 

12/23/20: Lupron + Medical Oncology NP Appointment + Blood Work: $1,959.16
12/28/20: GYN Appointment: $324
12/28/20: GYN Hospital: $248.60
1/2/21: Exemestane (generic): $1,499.99
1/7/21: Breast Center NP Appointment: $221
1/11/21: Pelvic Ultrasound Radiologist: $227
1/11/21: Pelvic Ultrasound Hospital: $857
1/11/21: Blood Work: $764
1/21/21: Medical Oncologist Phone Appointment: $260
1/21/21: Medical Oncologist Hospital: $105
1/22/21: Lupron: $571.16
1/22/21: Tamoxifen (generic): $228.99
2/19/21: Lupron: $571.16

Total cost to date: $422,571.99
With insurance, cost to me: $8,254.63

3/18/21: Lupron + Medical Oncology NP Appointment

I wore a KF94 mask again today, and they didn't bother giving me a new surgical mask.

I was originally scheduled to see my oncologist, but at some point the online patient portal showed that the appointment was switched to the NP. I don't know why, and I don't really mind. I like my NP a lot now.

I had expected to get my blood drawn today, and I'm curious to know what my estradiol number is. But my NP said my oncologist decided to put it off for another month, so that my body will have had 3 months to adjust to Tamoxifen before we look at my hormone numbers again.

First we went over all my side effects. 

I seem to have a runny nose all the time now. Sometimes I wonder if I might be developing seasonal allergies, but it's also listed as a side effect of Tamoxifen, so who knows. I keep meaning to try some seasonal allergy medication, just to see if it helps, but then I never quite feel like the runny nose is that bad, I feel like I can put up with it. Interestingly, my NP asked if my nose hairs have all grown back! It's true that I lost all my nose hairs during chemo, and whatever hair that is growing back now, including on my legs and underarms, has grown back much thinner. So, maybe part of the problem is that I just don't have enough nose hairs anymore. 

My hair is growing in thin, presumably because of the Tamoxifen. If I don't shower for a couple days, and my hair gets a little matted, my part becomes pronounced in the back. Not quite as bad as in this photo, but similar, and definitely evident. The friendly medical assistant I saw today was very positive and encouraging about my hair growing back, but I told her I still just don't feel like myself, and I'm impatient for my hair to grow longer. 

The first three fingers of both hands continue to be very mildly numb and tingly. This persistent neuropathy doesn't interfere with my activities of daily living at all, but I can feel the numbness and tingliness when I tap my thumb and fingers together. 

I still feel some stiffness in my fingers, particularly in the morning when waking up, but it's not nearly as severe as it was before. My legs are much improved, too, and they no longer feel stiff like they did when I was on exemestane. I first noticed the difference in the kitchen; in the time it took to cook dinner, my legs used to stiffen up so that sitting down to eat felt like a huge relief. Thankfully, that's no longer the case. Going up and down the stairs feels easier now, too.

After talking through all that, the NP did a physical examination, which went fine. I'll see my oncologist again in another 3 months.

Upstairs in the infusion room, the nurse who gave me my Lupron shot was new. She said she's a traveling nurse from Florida! I don't know how hospital staffing works, but she said she's filling in for one of the regular nurses for the next 3 months.

Incidentally, today my left arm only feels sore at the vaccine injection site if I touch it. I suspect all soreness will be gone tomorrow.

3/17/21: Day 3 of Moderna Vaccine Side Effects

Much better. Today I no longer felt especially cold or tired. My left arm is still sore, but only around the injection site, and I can lift my arm above my head; the soreness isn't limiting my activities anymore. 

3/16/21: Day 2 of Moderna Vaccine Side Effects

Last night I was so cold. I piled on the blankets and my hands would not get warm. Maybe that counts as "chills", a common side effect, though I wasn't shivering or anything. Today I still felt cold, but not as much as yesterday.

I've also been kind of tired, but again, not as much as yesterday. Last night I went to bed before 9:00 pm, which is super early for me. 

My arm is still very sore, and I still can't lift it above my head. 

3/15/21: I Got My 1st Dose of a COVID-19 Vaccine

My hospital network has been sending me regular emails about the availability of COVID-19 vaccines. They've been exceptional at communication, letting me know what groups are eligible when, and what to expect from the hospital. 

On February 23, I got an email saying that, based on my medical records, I am now eligible for the vaccine because I have two medical conditions that put me at increased risk for serious illness. I was a little surprised because I thought breast cancer was my only qualifiying medical condition. Looking at the CDC list of certain medical conditions, I think the hospital must be counting the loss of heart function that I experienced while on Herceptin as a "heart condition". The email said that once the hospital could confirm their vaccine supply, they would send another email with an invitation to make an appointment. 

Two days later, I got an email with a link to schedule an appointment. The link was specific to me, and I never had to enter my name or any personal information at all. Literally all I had to do was select a location (out of 11 possible sites), a date, and a time. Once my appointment was scheduled, I immediately got a confirmation email with a link for further information. The hospital's vaccination information site is clear and straightforward and includes maps, driving directions, parking information, basically everything I needed so I knew what to expect. The process was so smooth, it's really reprehensible that the state web site for public vaccination centers has been such a disaster. 

I took the earliest available date, which was 3 weeks away at the time.

So today I had my appointment! I went to my chosen site, which was actually the hospital's records building. The entire process from check-in to the 15-minute observation period was seamless. I got the Moderna vaccine, and made my appointment to get the 2nd dose in 4 weeks. 

The nurse who gave me my shot was super kind and helpful. I told her I had heard that a potential side effect - swollen lymph nodes in the underarm area - can be confused as a symptom of breast cancer, and I had seen an article recommending that patients who have had lymph nodes removed on both sides (as I have) should request to get the shot in a leg instead, which would help prevent lymphedema and also avert the potentially alarming side effect problem. The vaccines were being administered in curtained off areas, so there was enough privacy for me to pull down my pants if I needed to, but since I've had injections in my arm before (like the flu shot), how important is the leg recommendation really? She was very attentive and said she didn't know, so she went to ask the pharmacist. When she came back, she said she spoke with both the pharmacist and the physician assistant, and they said getting the shot in the leg wasn't necessary because I didn't have a lot or all of the underarm lymph nodes removed, and also because I don't have a history of injections in the arm being a problem. 

I got the shot in my left arm, since I had fewer lymph nodes removed on that side. The nurse told me not to worry if I get a rash at the injection site, a common side effect of the Moderna vaccine. She recommended drinking extra water to stay hydrated, and said I can use ice or a cold compress if the injection site hurts, or I can gently massage the area, if that helps.

So far my left arm is feeling very sore. I actually can't even raise my arm over my head because the injection site hurts so much. My arm is achy all the way down to my left hand, and I have this odd sensation like there is something cold running through my veins. 

2/19/21: Lupron + Other Updates

I think today was the first time I felt like my monthly Lupron appointment was a burden. I guess I had gotten so used to weekly appointments for chemo, and then Herceptin infusions every 3 weeks, that when I got down to only Lupron appointments every 4 weeks, it felt luxuriously infrequent by comparison. Normally I don't mind going in, but it's school vacation week, and a snowy day; I would have preferred to sleep in, and not drive in the snow.

There's been a lot of chatter about upgrading your masks for COVID-19 protection. I recently bought some KF94 masks, and I wore one for today's appointment. In the past, I would wear a surgical mask. The Cancer Center provides surgical masks for people to use instead of cloth masks, but if you already have a surgical mask, they just like to confirm that it's a new one. I was a little confused today when the person checking me in handed me a surgical mask along with my screening sticker and identification tags, without asking if my mask was new or not. Maybe she thought it was made of cloth? Or maybe they have a new procedure to hand out new masks to everyone. I decided not to swap out my mask since a KF94 is supposed to be better than a surgical mask, but I think if it happens again, I will wear their surgical mask on top of my KF94. That way they can be assured that I am wearing a new mask, no matter what other mask I may be wearing. 

(As an aside, I wonder if they want to be sure that everyone is wearing an actual medical grade surgical mask. All the surgical masks we have been able to purchase since the pandemic started look like surgical masks, but none are labeled with ASTM standards. By contrast, the surgical masks I bought from CVS for myself during chemo, before the pandemic, were clearly labeled as meeting ASTM Level 3 standards.) 

Anyway, the shot went smoothly, and I was glad to have the nurse who I think gives the best shots. 

Here are some other updates:

I have been diligently applying the scar cream to my port scar every night. It's part of my routine now, I put it on after brushing my teeth. It doesn't seem like it's doing anything, though; I think the scar looks the same, but it's hard to tell on a day-to-day basis. 

I think I'm doing fine on Tamoxifen. I have side effects, but they don't disrupt my activities of daily living, so I figure they are manageable. I expected the joint stiffness in my fingers to go away once I stopped exemestane, but this page lists joint stiffness as a "less common" side effect of Tamoxifen. I wonder if already having joint stiffness made it more likely for it to stick around when I switched to Tamoxifen... Very sadly for me, my hair is growing back thinner than it was before chemo; hair thinning is listed as one of the "more common" side effects. Also, my vision is poorer, but it's been a little blurry ever since chemo, so it's hard to know what to blame. Getting my eyes checked is on my list of things to do after the pandemic.

Meanwhile, the first three fingers on both my hands continue to feel very mildly numb and tingly. Most of the time I don't even notice it anymore, but if I tap my fingers together, I can feel it. 

1/22/21: Lupron + I Picked Up a Prescription

The medical assistant who took my vitals today introduced herself because she's new. She's the second new medical assistant I've had in recent months, and it does make me wonder what happened to my old familiar medical assistant. 

It's interesting... For the 12 weeks I had chemo, I saw the same medical professionals week after week. They all knew me, and their friendly faces were so comfortingly routine. Now that I'm a year out from chemo, I'm seeing new faces all the time. I'm not sure I can describe the feeling. It's kind of like staying an extra year in school; all the people you associated with the place have moved on, but you're still there.  

My nurse today was one I hadn't seen in a while; she used to be the "new" nurse, but now she's just in the regular rotation. I like it when she's my Lupron nurse because her shots are always painless! She says it's because she does the injection veeeeeery slowly. Any time I mention how much I appreciate her painless shots, she says I made her day by saying so!

After the shot, I picked up my Tamoxifen prescription. I'll start it tonight. Wish me luck.

1/21/21: Medical Oncologist Phone Appointment

One of the nurses I talked to last week warned me that my medical oncologist might run behind schedule. She called 30 minutes late today, but I didn't mind. I appreciate it when I am not rushed through an appointment, so I just imagined that she was talking with other patients with lots of questions and issues, like me. 

She said that FSH and LH aren't really reliable measures of menopause while on Lupron, so she mainly looks only at the estradiol. She confirmed that she does look for a very low number, like the "<5" value I had last July, before the spotting started. My two recent blood tests, however, had my estradiol at 31 and 10, which suggests that my ovaries are still functioning.   

So why would the Lupron just suddenly stop working? She thinks it's not that the Lupron stopped working, but that my ovaries starting working again. Typically, chemotherapy puts the ovaries into a chemically-induced menopause - sometimes called "chemopause" - which is sometimes permanent, sometimes temporary. I finished chemo over a year ago, and my doctor figures my ovaries are only now "waking up". The Lupron is probably as effective as it's always been, but previously it was doing a good job suppressing chemo-suppressed ovaries, and now it's doing an okay job suppressing functioning ovaries. I asked if having partially suppressed ovaries is normal? She said it's "a little weird." 

I am already on the highest monthly dose of Lupron. Apparently it's not unheard of to increase the dose even more by giving the shot every 3 weeks instead of every 4 weeks, but she said her colleagues didn't recommend it, since some patients get by on just half the dose I'm getting. There is a 3-month dose, which is 3 times the monthly dose, but it could produce inconsistent results, with the higher concentration of medication at the beginning of the 3 months leading to more side effects, and the wearing off of the medication towards the end of the 3 months leading to estrogen production.  

So, she suggested I stay on the same dose of Lupron, and switch from exemestane to Tamoxifen. This is the #2 scenario of Ovarian Suppression + Tamoxifen that I described in this post. I have to say, I am so glad I have that post to refer back to! I was feeling uneasy about switching to Tamoxifen, because it feels like I'm "settling" for a less aggressive treatment, and I want to feel like I am doing everything in my power to reduce the chances of a recurrence. That post reminded me that I've always been in an intermediate "grey area," not clearly high risk, but not clearly low risk either. The original decision to take exemestane instead of Tamoxifen was an effort to err on the side of caution. I was prepared at the time to switch to Tamoxifen if necessary, only it turns out the precipitating factor isn't the exemestane being unbearable, but rather the Lupron being ineffective. 

I was surprised that my doctor did not even bring up oophorectomy as an option. Since that was the path I was expecting, I asked her why not. Basically, she appears to have a philosophy of being conservative when it comes to surgery. Like, removing body parts is pretty drastic, so don't do it unless you really have to. This is definitely Ken's perspective, and I lean in that direction, too.

I told her my concern about "settling" for a less aggressive treatment, since my current treatment of Ovarian Suppression (via Lupron) + Aromatase Inhibitor (via exemestane) is supposed to be more effective. Shouldn't I consider switching from Lupron to ovary removal for the ovarian suppression, and sticking with exemestane? My oncologist basically answered the question by assuring me that Lupron + Tamoxifen is still an aggressive course of treatment. She didn't say it explicitly, but I got the feeling she thinks, at least for me, the risks of ovary removal are not worth the benefits of exemestane. 

I'm a bit conflicted. On the one hand, I know I am "settling" for a less aggressive treatment, but on the other hand, I'm relieved I don't have to get an oophorectomy. I was already wary of the procedure because of articles like this that lay out the risks. It helps to remind myself that I can always opt for an oophorectomy later, if I change my mind. Also, it helps to remember that I am following the recommendation of my oncologist; I would have to go against my oncologist to get the oophorectomy, and that would feel weird, too, because I do think she's a good doctor. (I think if I really felt strongly about it, I'd be motivated to get a second opinion, but I'm not.) 

So just when I thought I could get used to a stable set of side effects, I'll be starting all over again with a new medication. I think I can handle stuff like hot flashes and fatigue, but I really, really, really don't want to have any hair thinning! I'm just starting to feel optimistic about my hair growing back, but already it feels thinner than it was before chemo, and I'll be super sad if it gets even thinner. I'll also need to keep an eye out for more serious side effects, like symptoms of a blood clot or endometrial cancer. 

On the plus side, Tamoxifen is supposed to have a positive effect in bones after menopause, so it may counteract the bone loss from Lupron. Also, it can lower cholesterol levels, which is convenient since I now have high cholesterol.

1/15/21: The Cancer Center Called Me

Actually, two people called. 

First, a scheduler called. She said she spoke with my oncology NP, who requested that I be scheduled for a televisit with my medical oncologist. She said they are trying to minimize in-person interactions, so it'll be a phone call, and she made the appointment for next week.

I figured this means there isn't an easy answer, or an automatic next step. As I was wondering what options my doctor might suggest, the phone rang again. 

This time it was a nurse. She, too, said that she had spoken with my oncology NP. But compared to the scheduler, she was much more explanatory. She was like, "I understand you've been having some bleeding, and you're waiting to hear from your doctor..." She said my oncologist wanted to discuss my case with some colleagues in the main hospital in the city before meeting with me. I super appreciated this extra bit of information. It actually builds my confidence knowing that my doctor is seeking out other opinions. (My first oncologist also discussed my case with colleagues, and I appreciated it then, too.) I told her a scheduler had already called, and I already have a phone appointment. Since the scheduler actually set the date, I assume it leaves enough time for the doctor to gather whatever other information she needs. The nurse apologized for calling again when I already had an appointment, but I thanked her for giving me new information. 

1/13/21: My Medical Oncology NP Emailed Me

Actually, she sent me a message via the hospital's online patient portal. It was very short, like two lines, just to tell me that she knows I spoke with my OB/GYN, and that she'll talk with my oncologist about me on Friday morning, so she'll try to call me on Friday afternoon. I super appreciated the communication because it let me know not to expect anything until Friday, saving me two days of anxious wondering!

1/12/21: My OB/GYN Called Me

She got the pelvic ultrasound report. (That was fast!) I've been checking the online patient portal myself, but haven't seen it.

She said everything looks normal. The uterine lining is 3 mm, which is considered "thin" and normal for menopause, when the lining should be less than 6 mm. No polyps or unusual tissue, and the ovaries look normal. There is no "structural" reason to explain my bleeding, so the cause must be hormonal, which implies that my ovaries are not being completely suppressed by the Lupron.

I did see that the online patient portal was already showing my blood work results, so I asked her about those, too. My estradiol number (which should be very low) is still higher than it was last July, but lower than it was in December. This just shows that there is still some notable amount of estrogen in me.

My FSH is still too low for natural menopause, but she explained that FSH should be low because of the Lupron; in natural menopause, FSH should be very high, but Lupron works specifically by suppressing FSH. So today I learned that the markers for chemically-induced menopause are not the same as the markers for natural menopause. Because of Lupron, I should actually have very low levels of FSH (contrary to what I thought in December). My numbers are indeed low, though Monday's blood test showed higher levels than before. Apparently, the FSH may not be low enough, since my body is still producing enough estrogen to stimulate bleeding. 

The bottom line is that I shouldn't be producing estrogen, because estrogen fueled my cancer. The whole point of Lupron hormone therapy is to stop my ovaries from producing estrogen, to reduce my chances of recurrence.

So, now I wait for my medical oncology team to call me. I figure they will want to talk to my OB/GYN before circling back with me. 

1/11/21: Pelvic Ultrasound

This post being about a pelvic ultrasound should presumably serve as a TMI warning in itself...

I was supposed to drink 24 oz. of water 60-90 minutes before this appointment, to make sure I had a full bladder for the procedure. In recent days, I did a few trial runs of drinking various amounts of water and then waiting 90 minutes. I think if I had followed the instructions exactly, I might have peed myself during the ultrasound.

Luckily, the person on the phone with whom I made the appointment did clarify at the time that it's not the exact amount of water that matters, and I should not drink so much that I feel uncomfortable. So, I ended up drinking only about 12 oz. I felt plenty full by the time my appointment rolled around, and the technician didn't comment one way or the other.

I was surprised that the technician didn't ask me to change into a gown right away. Apparently the first part of the procedure is a transabdominal ultrasound, so I just had to lie on my back and lift my shirt just high enough, and push the front of my pants just low enough, for the technician to rub the transducer around on my lower belly. There was a lot of gentle pushing around, and I could not relax at all, my stomach muscles were actually tense from trying not to pee! This part lasted maybe 10 minutes, and she explained that the next part would be transvaginal. I said I was worried about my full bladder, and she said I'd be able to empty my bladder in between. Phew!

After coming back from the bathroom, the technician had me undress from the waist down and lie on the table with my feet in stirrups, with a sheet draped over me. She actually asked if I wanted to put the transducer in myself? I was not expecting that question, but I told her it's okay for her to do it. I thought she might slowly talk me through it, like the OB/GYN usually does, but nope, in just a couple seconds, before I knew it, the transducer was inserted. The next several minutes were about as uncomfortable as you would imagine.  

The whole appointment lasted about 30 minutes. 

Afterwards, I headed over to the Cancer Center part of the hospital for a blood draw, as instructed by my NP. Everyone seemed surprised to see me coming in off-schedule. I think they might have even called my NP to double-check the order. 

1/8/21: My Medical Oncology NP Called Me

She called to give me an update after having talked to my medical oncologist and OB/GYN about my spotting. 

First, she asked me to go in on Monday, after my ultrasound, to get my blood drawn. They want to test again for FSH and estradiol, to see if the numbers fluctuate at all.

She said the most important message my medical oncologist wanted her to convey is that the situation is not catastrophic. We are still gathering information, and we will figure this out. It may take a few weeks, but should not drag on for months.

I appreciated this explicit message because part of me had already gone down this thought train: "So, if the spotting is a light period, that means I'm producing estrogen, which means the Lupron is not sufficiently suppressing my ovaries... I'll have to get my ovaries out, but in the meantime, what if all the estrogen is fueling cancer cells again!? But wait, the chemo was supposed to have killed all the cancer in me, so what are the chances of there being any lingering cancer cells that managed to evade the chemo, or any altogether new cancer cells?"

Anyway, the NP reassured me that there are many patients who end up having to temporarily discontinue Lupron or exemestane due to side effects or other surgeries or any number of reasons, so not having effective Lupron for a couple months is not an unusual situation. 

She also said that getting an oophorectomy was only one of a number of options my medical oncologist mentioned, if the problem turns out to be the Lupron. She said something about looking into whether or not Lupron can be given more frequently than once a month, but I have never heard anyone on any of the Facebook groups mention that. She also said something about switching from exemestane to Tamoxifen, and not doing any ovarian suppression; from what I've read, this was the typical pre-menopausal line of treatment until studies showed that ovarian suppression with an aromatase inhibitor (like exemestane) actually works better. 

I was hoping to wait until after natural menopause to get my ovaries out because this article says that "women under 45 who had ovary removal without hormone replacement therapy were at increased risk of dying from a range of medical conditions later in life," and this other article says, "There seems to be no increase in medical side effects if oophorectomy is performed after a woman undergoes natural menopause." It's not clear but I suspect both articles are referring to the same study. Anyway, my OB/GYN already pointed out that cancer is the more pressing threat right now, so I should weigh the possibility of cancer recurrence with more priority than the possibility of unknown mortality risks later in life. She hasn't come right out and said it, but I get the feeling she thinks an oophorectomy would make sense, and the risks are acceptable. 

Okay, I am obviously going down the rabbit hole that my NP specifically didn't want me going down just yet. Who knows, maybe the ultrasound will show something completely unexpected... I need to stop speculating. I will get the ultrasound and blood test on Monday, and then I'll re-group again with my medical oncologist or NP.

1/7/21: NP Appointment

Today's appointment was a routine follow-up with my NP in the Breast Center. I don't get any regular imaging to look for cancer recurrence, just these physical breast exams.

I had forgotten how thorough my last appointment was, so I was pleasantly surprised when she asked me how all my various side effects and treatments are going. I told her about my recent spotting and upcoming pelvic ultrasound, and she seemed to think I will most likely still be able to continue with Lupron. I couldn't tell if she was basing that on experience and what she's seen in patients, or if she was just trying to be encouraging because I said I wasn't excited about potentially having to get my ovaries out. 

During the physical exam, I was happy to hear her say that my DMX incisions look good. She asked if I'm using anything on them to reduce the scarring, and I said no, because I don't really care how they look since no one sees them but me. I asked if I should be using any products for healing purposes, but she said no, only for aesthetic reasons. I told her I am using Mederma on my port scar, and she said the port scar is always worse than the mastectomy scars! She said she sees it all the time and doesn't understand why. I said, only half-jokingly, that maybe my breast surgeon is just that much more skilled than the port installation/removal surgeons. 

She also mentioned that if I ever feel uncomfortable with my dog ears, I can have them removed with revision surgery. My dog ears are pretty small, they're a bit of extra skin at the end of my mastectomy scars, under my armpits, that pucker out a little. They're annoying, but relatively minor, and I'm okay just living with them, at least for now.  

It was something of a relief to have a medical appointment that went so smoothly, with no new or on-going issues to manage. My next NP appointment in the Breast Center will be in a year, the longest stretch I'll have had between appointments. I think it's noteworthy that at this point, I do feel comfortable with yearly appointments; that "baby bird" feeling is subsiding, and in its place, I'm feeling an increasing eagerness to get to a point where I just have a stable schedule of routine appointments without any new concerns.

1/5/21: (6 Weeks of Using Scar Cream) Port Scar Update

I started using Mederma PM Intensive Overnight Scar Cream about 6 weeks ago. Here's how that's going.

The lighting in the two photos is different, but I think the scar looks the same, or maybe even worse, more red. According to this informational page, "Scars can go through a phase of becoming pinker or slightly red." 

It also says scars should not be exposed to sunlight, and I can say for sure that, being winter, and having no place to go in a pandemic, my scar has been 100% hidden from sunlight. 

I know that scars take a long time to fully heal - the web page I just linked says 12-18 months - so I'm not surprised at how the healing is going; I'm making this post mainly to acknowledge that I know not to expect any remarkable changes at this rate. Even the directions on the scar cream says to use the cream "once nightly for 8 weeks on newer scars and 3-6 months on older scars" and adds for good measure: "Don’t get discouraged if you don’t see improvement right away."

I know I've talked about this scar a lot, but compared to how I feel about my hair, it's not so bad. I mean to say, I'm vain enough to really hate having to wait for my short hair to grow long again. But I don't feel anywhere near as strongly about the scar. Sure, it would be really nice if the scar faded a bit and was a lot less noticeable, but the scar doesn't upset me like my hair does. Maybe I'll feel differently in the summer, when the scar is actually visible to others. Who knows. In the meantime, I'll just keep using the scar cream and hope it's doing what it's supposed to be doing.