6/25/20: NP Appointment

Today I had my "6-month" surgery follow-up. It was originally supposed to be in March but was re-scheduled due to the coronavirus.

Unlike at the Cancer Center, I didn't get a pre-screening phone call in advance. When I arrived at the hospital, a check-in desk was set up just inside the main entrance. I was given a slip of paper with instructions to call the Breast Center from my car. The waiting room isn't open yet, so they're only letting in patients when exam rooms are ready. I went back to my car to call the number. They asked me some COVID-19 screening questions, then said I could come in.

Re-entering the building, the check-in desk had me sanitize my hands before heading to the Breast Center. Masks were required at all times, but they didn't ask me to swap out my cloth mask for a surgical mask, as the Cancer Center does. In the halls, any place where people were likely to line up, new markers on the floor showed where people should stand in order to maintain distance. Checking in for my appointment, new pexiglass dividers were installed in the reception area, and they had me verbally give consent for treatment instead of signing a form. A medical assistant brought me directly to an exam room and took my vitals. 

I was pleasantly surprised when the NP asked me about all aspects of my treatment, not just my recovery from surgery. She asked whether or not I was considering removing my ovaries instead getting the monthly Lupron injections. I have some reservations about getting an oophorectomy, and I'm hesitant to opt for an elective surgery. She said most women opt for the oophorectomy eventually, sometimes just to avoid having to come in for monthly appointments. Still, even though I have variants of unknown significance in genes linked to ovarian cancer, it's not advised to make medical decisions based on VUS-es, which is what my genetic counselor and my first medical oncologist had told me, too. She reassured me that I can continue to think about it and always make a decision later. She also suggested I ask my new medical oncologist, and the oncology NP, for their thoughts, too. 

I went through an overview of the symptoms in my hands. She agrees with my medical oncologist that the stiffness in my fingers is probably from the exemestane. She was just as perplexed about the numbness and tingling as everyone else. She seemed to think it's reasonable to wait and see how my hands feel after I finish Herceptin before investigating it too deeply. And she said she'd contact my physical therapist about scheduling an appointment for me when she starts seeing patients again, in case some physical therapy might help. 

I also mentioned that my arms get tired and sore more easily. When I hold a phone to my ear, the inside of my elbow, maybe even my bicep, starts to feel tight pretty quickly; I have to extend my arm for relief, and I end up switching the phone back and forth between my left and right hand. Also, things that I wouldn't have considered "heavy" before now feel heavy. She said my arm muscles have probably weakened from having to use them less while recovering from surgery. I remembered that my physical therapist was just starting to give me strengthening exercises when the pandemic hit, so that's another thing to bring up with her when I can get an appointment.

She finished the appointment with a physical exam, and said my scars are healing fine. I reported feeling patches of numbness and tingliness across my chest, and she said it's normal. She reminded me I can ask for a prescription for contoured prosthetics any time. 

At first she said my next follow-up appointment would be in 1 year, and in between I would see my medical oncologist, so that I'd see one or the other every 6 months. I think she saw right away that I was surprised at the schedule. Another baby bird leaving the nest feeling! She immediately offered to see me in 6 months, through the end of my Herceptin treatments, and I'd start with yearly visits after that. 

To minimize interactions due to the coronavirus, there was no check-out process, and someone is supposed to call me later to schedule my next appointment.

I hadn't seen my NP in so long, I left feeling pretty good knowing that she's another person on my medical team with whom I can discuss my treatment.

6/17/20: Cancerversary

Well, a year ago today, I was diagnosed with cancer.

Just a little more than one year ago, life was pretty normal. There was still a chance that my cyst was just a cyst, nothing more. But in the year since 6/17/19, cancer has been front and center. My mother's passing, my dad's cancer, and COVID-19 have all made mortality loom even larger. What a year.

It's been a year of regular, sometimes weekly visits to the Cancer Center. A year of doctor appointments, treatments, and physical therapy. A year of surgeries, medications, and side effects.

I was up late and typed up a long post, but upon re-reading, I was basically just wading knee-deep in the pity pool. So I deleted it. I mean, suffice it to say, having cancer is no fun.

Some people have tried to be encouraging by saying things like, "Now that surgery / chemo is over, you can put cancer behind you and move forward!" I can't speak for everyone, but for me, it doesn't seem like having cancer is something I'll ever be able to "put behind me." Side effects and missing boobs are a constant reminder. Six months after my last chemo, my hair is still too short for me to go out in public without a hat. (I am really so relieved that COVID-19 provides the perfect excuse to stay home and not be seen. Dodging Zoom calls takes a bit more effort.) Even after my Herceptin treatments end this fall, I'll still be getting daily and monthly hormone therapy indefinitely. And, of course, there is always the fear that the cancer will return.

Okay, I guess I'm still in the pity pool. Don't worry, I'll get out eventually. But sometimes you just need to sit in it for a while.

6/12/20: Maintenance Herceptin #9 + Lupron

I arrived at 9:15. There was a new pexiglass barrier on the reception desk between me and the person checking me in. She handed me a surgical mask and didn't ask me for my name. Through all the crazy uncertainty of the last few months, my visits to the Cancer Center have been a surprisingly grounding routine.

While waiting for the port nurse, the social worker happened by. She greeted me by name, and I felt bad that I couldn't come up with her name right away. There's actually a thing called "chemo brain", a chemotherapy-related cognitive impairment. I think I have it. I've had trouble coming up with the right word since even before being diagnosed with cancer, so I can't blame chemo for all my mental fogginess.

But there are two things in particular I've noticed over the last several months. First, I am taking a lot longer than usual to read books. I find myself frequently re-reading sentences, so much so that it sometimes feels like I read every sentence twice in order to process it.

Second, I can't follow complex, fast-paced TV shows anymore. We recently watched the series Star Trek: Picard, and I had trouble keeping up, even my kids (in middle school) rolled their eyes at my questions. Then, inspired by Picard, I went back and re-watched episodes of Star Trek: The Next Generation. I specifically remember watching an episode maybe just a couple years ago, and being impatient with how slowly the story unfolded, how every detail was explicitly spelled out, as if the audience couldn't be trusted to make inferences. Watching the show now, I am practically relieved at how clearly events and dialog explain what is going on; the exact thing that used to bother me is now something that helps make the show enjoyable for me.

Anyway, the social worker was on her way to somewhere else, so we only exchanged pleasantries. I think it would have been nice to chat with her for a while, but I guess I don't feel "in need" of talking to her, so it's okay.

For the first time during this pandemic, the port nurse accessed my port (which used to be routine), instead of having the infusion nurse do it (presumably to minimize exposure risks). Even with the orange "Allergy" tab hanging off the "Screened" sticker on the front of my shirt, I had to remind her to use the Betadine instead of chlorhexidine. I think I've gotten more comfortable with speaking up for myself, and less indignant at this kind of oversight. I don't know if it's because I have general confidence in the port nurse, or if it's because I feel a sense of familiarity with her, or if I've just become more understanding that medical providers are human, too, and can make mistakes.

With my port accessed, I didn't have long to wait before being called into the infusion room. Apparently, the forehead thermometer was broken and sent off for repair, so the medical assistant was back to using an oral thermometer.

My infusion nurse came in pretty much as soon as I got settled into my bay. I told her all about the flare-up with my numb and tingly hands, and how doing nothing has gotten them back to baseline.

While getting me started on the Herceptin, she briefly wondered if maybe I should take a break from the hormone therapy, thinking it might be the cause of my hand troubles. I immediately felt uneasy about that option. Stopping my hormone therapy might give the cancer just the chance it needs to start growing again... Also, I pointed out that the first time my hands felt numb and tingly was before I even started exemestane. So maybe the exemestane has exacerbated the issue, but it definitely wasn't the initial cause. Still, that didn't rule out Lupron as the culprit.

I told her how I had found some web sites that link carpal tunnel syndrome with Herceptin. Like my medical oncologist, she didn't seem familiar with the connection, but didn't discount it either. I told her how I've been thinking that maybe if I can just get through my year of Herceptin treatment, then I'll also be almost a year out from chemo (so any residual effects from Taxol should be gone, too), and maybe the problem will just go away! At least I'll have fewer variables by then; after Herceptin is over, I'll only be getting hormone therapy with Lupron and exemestane.

My infusion nurse said the problem with my hands was clearly interfering with my life, and she suggested it might be time to see an orthopedic hand specialist. Maybe they can actually diagnose carpal tunnel syndrome, or rule it out. Again, I felt a little reluctance. That's yet another specialist, another referral, more appointments, maybe more imaging. I don't want to get bogged down chasing this symptom if there's a possibility it might just go away on its own in the fall? But I guess I don't want to risk the symptoms getting worse, either... Anyway, she said she'd touch base with my doctor about making a referral. I think I will be extra vigilant about not over-using my hands and arms, and I'll consider the specialist if my symptoms take a turn for the worse again.

I asked my nurse if she knew when my physical therapist would be accepting patients again. My medical oncologist had said that commonly one of the earliest treatments for something like a pinched nerve is physical therapy, so maybe it would help if I could see my physical therapist again, before turning to a hand specialist? But she didn't know when my physical therapist would be available.

Once my Herceptin was finished, I didn't have any wait at all to get my Lupron shot. I washed my hands and was out of the building by 10:45. Only ninety minutes total! I think that may be a record.

6/4/20: Doing Nothing Helped

The weirdest part of having these symptoms in my hands is not having any visual indication of what's going on. Someone looking at me would think I'm fine. I feel like, if someone asked me, "How are you?" and I answered with a brief description of the pain and discomfort in my hands, they might think, "Uh... O-kaay... Well, your hands look totally normal, so..." I think it's given me some understanding of how people with hidden disabilities, or chronic pain, might feel.

So after a day of pretty much doing nothing, I was able to wear a wrist brace on both hands to sleep last night, and this morning I woke up feeling a LOT better! My left hand felt like it was back to the old baseline, at least temporarily. But even the slightest use - like trying to type with my left hand - made the numbness and tingling increase. I'm going to keep minimizing the use of my hands and limit my exercise to walking, with the hopes of seeing more improvement, though it sure makes me feel useless.

Of course, doing nothing is not a realistic way of managing this pain. I'm hoping the doing nothing will help me get back to the old baseline, and then gradually I can increase my activity without adversely affecting my hands.

6/3/20: Left Hand was a 7 on Pain Scale

The pain is intermittent, not constant.

My left hand is orders of magnitude worse than before. I am typing this with my right hand only. Typing with my left hand is impossible because either my hand hurts and can't be used, or it's fine at the moment but typing makes it worse.

After my last oncology appointment two weeks ago, I started wearing my wrist braces to sleep every night, plus I started doing yoga about every other day. Just a light start, first only 3 series one sun salutations, then gradually adding in 2-3 series two sun salutations. I followed the yoga with leg stretches. I noticed an immediate benefit in my legs; they didn't feel as stiff. But in retrospect, I think poses like the downward dog put the wrong kind of pressure on my wrists, even though my wrists did not hurt while doing yoga.

About a week later, my left hand started acting up. After getting up in the morning, instead of settling into the usual "baseline" (very mild tingling in just the first 3 fingers of both hands), I continued to feel increased numbness and tingling in my left hand throughout the day. Extreme temperatures (a hot plate from the microwave or a cold glass of water) made symptoms worse. Sometimes my fingers themselves felt cold, and I wondered if there was a problem with my blood circulation. In retrospect, at this point, I think I should have taken it easy and babied my left arm. Instead, I kept up with yoga and nerve glides and stretching and walking and housework and gardening as usual.

A few days ago, I woke up with my left hand in pain. It was super numb and tingly, and the pain came from a sensation that something like a rubber band was squeezing my hand so that my fingers felt like their circulation was being cut off, like they were under pressure and would explode. This is the level 7 pain (on a scale of 1 to 10) referred to in this post's title. I freaked out and walked around my bedroom. Any attempt at stretching or nerve glides made it worse. I even took a Lasix (and potassium pill) just to feel like I was doing something. Gradually, after about 30 minutes, my left hand felt better.

For the record, I don't think the Lasix helped. My left hand continued to look noticeably swollen, puffier than my right hand. I didn't even pee a lot, implying there wasn't a lot of excess fluid to get rid of.

At this point, I was worried, but not too worried because the last time my hands freaked me out in the morning, it eventually passed. But what finally got me super worried was that last night, I felt the level 7 pain in my left hand before going to bed, not in the morning when waking up. Putting on the wrist brace made it worse. Walking around helped a little, but what helped the most was squeezing my left hand into a tight fist, with the thumb on the inside. The problem was, once I tried to release the fist, I couldn't open my fingers all the way! It hurt a LOT. Ken noticed a very prominent "line" popping up on the inside of my left wrist, like something was stretched taut, and trying to open my fingers was stretching that line more than it could go. I took two ibuprofen to help dull the pain to fall asleep, no wrist brace on my left hand.

I had made up my mind to call the doctor today because the pain was getting unbearable. In the morning, Ken told me he Googled "carpal tunnel syndrome" and suggested complete rest. I took 2 more ibuprofen and walked around my bedroom for an hour. It's better now. I don't feel like I need to call anymore; I'll see how today goes. I'm going to take it easy for a while. No yoga or housework or gardening. Maybe I'll continue with leg stretches, but only minimal arm stretches, if any. I'll keep walking. Typing only with right hand, but I should limit that, too. Thank God my right hand is still functional. If both hands were acting up with level 7 pain, I honestly don't know what I would do.

5/21/20: I Checked My Insurance Claims Online

As always, I am thankful to have medical insurance. I think it's unconscionable that our medical system is a for-profit enterprise, and that some people literally go bankrupt or die because they can't afford to be treated.

These are the amounts that were billed to our insurance company. We've already met our deductible for this coverage year, so we did not need to pay anything on these claims.

3/20/20: Maintenance Herceptin #5 + Lupron (Including Blood Work): $15,949.91
4/6/20: Echocardiogram Cardiologist: $243
4/6/20: Echocardiogram Hospital: $1,133
4/10/20: Maintenance Herceptin #6: $15,122.75
4/17/20: Lupron: $571.16
5/1/20: Maintenance Herceptin #7: $15,121.64

Total cost to date: $291,034.56
With insurance, cost to me: $4,254.63

5/20/20: Maintenance Herceptin #8 + Medical Oncologist Appointment

Yesterday, the Cancer Center called to pre-screen me for today's appointment. Over the last few months, the number of COVID-19 screening questions has grown, and the questions have evolved. At first, they asked only if I'd travelled to China in the last 2 weeks, then they asked if I'd travelled internationally, and now they ask if I've left the state. They used to ask if I'd had a fever or respiratory symptoms, and now they also ask about other possible symptoms, like if I've lost my sense of taste or smell. And in terms of exposure, not only do they want to know if I've been in contact with anyone who has been diagnosed with or tested for COVID-19, they also want to know if I've been in contact with anyone who just shows symptoms of COVID-19.

I had an 8:45 appointment to get my port accessed and blood drawn, but around 9:00, the port nurse came out and said she had to check with my doctor because she didn't see any lab orders for me. Meanwhile, a medical assistant took my vitals.

It turned out that my oncologist did not require any blood work today, which threw me off a little because I was hoping to see if my vitamin D levels have improved. (The last time I checked, they were slightly better, but still below normal range.)

In the exam room, the medical assistant let me know that the doctor was running late. I had a book to read, so I didn't mind the wait.

The doctor came in around 9:45. We started out talking about how I've been feeling emotionally, and it occurred to me to say, "I bet you hear this kind of stuff from your patients all day long, just the same type of complaints from different people." She told a story of something that happened to another patient, along the same lines of what I had been saying, and it really helped in that "you are not alone" type of way. She said some supportive things, and it really felt strengthening.

I asked if my vitamin D deficiency was something I should be worried about. My vitamin D number is in the mid-20s, but normal range is 30-60. She said if my number was in the teens, then that would be concerning, and she might temporarily prescribe a weekly uber-dose of vitamin D to get the number back in the normal range. But with a number in the 20s, my 2000 IU supplement should be enough, plus we're coming up on summer, and the added sun exposure should help, too. She said she'd check my levels next time.

I also asked about my most recent echocardiogram. I checked my results online, and the primary number of interest, the ejection fraction, wasn't listed exactly. My first report had an ejection fraction of 63%, and the second report said 61%. This third report said only >=55%, with a note saying it was "visually estimated". The ejection fraction is affected by Herceptin, and some people have to discontinue treatment if the number gets too low. My doctor didn't know why this report didn't have an exact number, and she said she'd look into it. She pointed out that the range might not be informative enough; if my ejection fraction was actually as low as 55%, even though that's in the acceptable range, the precipitous drop would be concerning.

Then, I gave a full report on what's going on with my hands. She said the fact that symptoms get worse when I'm lying down makes her think it could be a pinched nerve in my spine. Apparently, sometimes one of the first things to try for a pinched nerve is physical therapy, so it's too bad I'm not able to see my physical therapist because of the coronavirus. She asked if doing yoga was within the realm of possibility. I said I used to do it a long time ago, so it's possible... She suggested doing yoga 3 or 4 times a week between now and my next appointment, and if there's no improvement, she might want to order an MRI.

There are medications that can be used to address numbness and tingling, but I said I am not too keen on taking medication for a side effect of another medication. I'd rather try to manage the symptoms in other ways.

I asked if she thought my symptoms might be related to Herceptin. She didn't seem familiar with a link between Herceptin and carpal tunnel syndrome, but she also said she "never says never", because the range of reactions to medication is so broad; it's not impossible. She said there's a stronger connection between Taxol and neuropathy, and it's possible for neuropathy to start even after finishing Taxol. In fact, she said that she usually advises patients to allow a full year for the effects of Taxol to subside. Either way, if I can just push through until next fall, maybe things will get better after I'm done with Herceptin, and with chemo farther behind me.

I also described the stiffness I've been feeling in my legs. Recently I've noticed that in the time it takes me to cook dinner, my legs feel so tight that when I sit down, it's a huge relief. But then, if I sit for even just a few minutes, standing up takes effort, and I feel a lot of discomfort in my legs for the first few seconds, until I'm able to walk it off. My doctor seemed confident that these symptoms are a side effect of the exemestane. I remember I first reported this symptom before I even started exemestane, and at the time she said it could be the Lupron. If it's hormone-related, maybe it's both. It's definitely gotten worse, so maybe the exemestane exacerbated it. In any case, she recommended doing leg stretches, which could also be accomplished with the yoga. Also, if the stiffness gets to be too much, I could try taking ibuprofen to relieve it.

Up in the infusion room, around 10:15, I got settled in a bay, and was immediately annoyed with myself because, despite having written down all my questions, I forgot to mention one of the symptoms that I thought was important. I felt like maybe it wasn't worth mentioning now, but my infusion nurse said if it was important to me, then I should say it. I appreciated that reassurance so much. I told her about the couple incidents when I woke up feeling like my fingers were being squeezed to the point of my circulation being cut off. She said she'd put it in her notes so my doctor would be aware of it. Also, she suggested wearing the wrist braces every night.

We discussed upcoming appointments, and she said my next oncology appointment would probably be with my doctor's NP, and after that, my appointments would alternate between the doctor and the NP. She must have sensed I was caught off guard by this news, because she then listed a series of positive things, like she was trying to allay my concerns. She said she thinks I will really like this NP, that it will be easier to get appointments (I won't have to move my infusion appointments from Fridays to Wednesdays, like I did today, in order to accomodate the doctor's schedule), that it's always good to have another point person for communications with the Cancer Center, and I can always request to see my doctor, if I want. I am actually pretty comfortable with the idea of seeing an NP, but I was feeling like I was just getting comfortable with my new oncologist, and now I'll have to get used to yet another provider. It felt like another "baby bird" moment. It's all fine. Just another step in the process.

I started the Herceptin just after 11:00. The infusion took the usual 30 minutes, then the infusion nurse de-accessed my port, I washed my hands in the restroom, and I was out by 11:45. So, 3 hours total, not including driving time.