Little Things in the Long Boring Middle of 20 Weeks of Chemo

cw: cancer

I've been ocassionally listening to a podcast called Breast Cancer is Boring. This week, I agree, or maybe I should say chemo is boring. To be clear, I think that being bored by my chemo is great news. It means I'm not experiencing serious symptoms and things are pretty predictable. 

tried to do yoga this morning, and this guy climbed up on my lap while we were suppsed to be focusing on our breathing

Wednesday was my 6th weekly infusion of Taxol. I have 6 more weeks to go. I've been doing this whole chemo thing for 14 weeks and that seems like a long time and I've still got more than a month to go, which also seems like a long time. To put that in perspective, though, the lady next to me at infusion this week said it was her last infusion; she'd started a year ago. I also know folks who've been doing this for 2 or more years. My nephew has to have infusions through 2024!

my daughter's friend gave me some stickers, so I used them to celebrate milestones in my planner

My nephew's situation is also much improved, which helps with everyone's worries and allows for boredom. His surgery was successful, he's healing well, and he's very active (he went from walking to running in seconds, by the look of things) and making huge progress on his motor control and all that. 

port-a-cath sprigs fresh out of the bisque

My symptoms from the start of the Taxol are much improved. I've only had two days of mild nausea during Taxol and the medicine I have was easily able to handle it. My appetite is back (with a vengance) and food tastes mostly normal. Ironically, the only thing that tastes funny to me is milk chocolate, I don't know why that is. Dark chocolate is fine.

port-a-cath sprigs in use

Last week they switched one my premeds in the infusion and that helped a lot. I'd been experiencing a pretty painful indigestion (or, Idk, pain in my chest) during the premeds while on Taxol, but the new stuff isn't painful at all. I also switched from Pepcid to Omeprazole to deal with the daily indigestion and that seems to help with the permanent feeling of pressure on my chest and back. The amazing thing about medicine that is preventing pain is that you start to forget that it's doing anything because not being in pain starts to feel normal.

new port-a-cath bulb with a bit more complex layering of the catheter

I still have, just random aches and back pain a lot of the time. Apparently one of the side effects listed for Taxol is pain in the joints and muscles, so I assume that's what I'm feeling. It's one of those symptoms that is more annoying than really disruptive, and pain killer takes care of it when I remember to take it. My weeks have developed a distinct pattern--or maybe its fairer to say this is the same pattern as during A/C but less dramatic. 

I wanted to play around with the idea of a heart / port-a-cath because I am aware the the port-a-cath is a bit creepy to some, but the heart is far cuter than I usually do in my work

On Wednesdays after infusion I'm tired and feel drowsy, dizzy, and kinda yucky. Thursdays I generally feel great. Fridays and Saturdays I start feeling a kind of undefinably badness that sometimes rises to mild nausea, but it has more often been presenting as soreness and depression or worry. I finally started labelling it to myself a few weeks ago and last week I make a consious decision to spend much of the day reading on the couch. I went for a walk in the morning, but avoided the computer and didn't try to clean or do work or even get into the studio. My mood was much more stable and by 6:30pm I wasn't in pain (usually I've been hurting by evening). I plan to take it easy again tomorrow.

I took a picture as soon as I started noticing discoloration on my hands so that I could compare later if the discoloration got worse. (When I was having hand symptoms before, I thought it would be funny to tell my oncologist that the neuropathy had caused my pinkie finger to not straighten--a symptom I've had since the 80s.)

Other symptoms have also improved during Taxol. My hands are in really good shape. The neuropathy / hand and foot disorder of the first weeks of Taxol seems to have gone away entirely. The skin on my fingers is smooth with only one broken bit on my thumb and I haven't had pain or stiffness in weeks. My fingernails have an almost imperceptible amount of discoloration (something they tell you to watch out for), but I don't think it even shows up in a photo. I've been icing my hands during the Taxol infusion every week to help prevent neuropathy or damage to my nails.

icing my hands (well, the one not holding the camera) during chemo

A lot of my symptoms are really mild and stupid, though a few are annoying. For several weeks I've had a pseudo bloody nose in the morning. I say "pseudo" becuase it isn't dripping, but I discover the blood when I blow my nose. But even that's improved; today I woke up without this problem. My mom says that the bloody nose might be related to the anemia. My oncologist says it isn't something to worry about. 

chemo this week. I'm sure these weekly pics are sooo interesting with the mask on

I didn't talk to the oncologist this week, so I didn't get much detail on my bloodwork other than it looks fine. That means that both my anemia and my liver enzymes must be improved from earlier in this process. I don't know if they are still "watching" these numbers or if I'm just fine. They always offer to give me a print out of my numbers, but I think having it would just allow me to obsess about something I don't need to obsess about. 

All through the pandemic online teaching the cats showed no interest in climbing on my lap during class, but now they love to climb on my lap while I'm typing or in a Zoom meeting. I guess they needed 2 full years to get used to the idea

I have noticed that I am mostly able to walk more without getting my heart rate too high. I even started walking all the way around Franklin park a couple of days in the past week, though I have to take a break partway up the hill on the 19th Ave side. I've been trying to keep my heart rate below 140 on the doctors orders. I'm using my fitbit watch to monitor it, but I do sometimes wonder how accurate it is. I went for a short walk with my husband the other evening, just about 6 blocks total (there and back) and when we got home my heart rate had reached 166. Oops.

This pic is from a week ago, but I already had a gap in my top lashes. now I have gaps in the top and bottom

A new symtom I noticed a week or two ago is that my eyelashes are falling out. It's very strange to experience because each one seems to start by going sideways and poking into my eye, so it is uncomfortable. My husband says he doesn't yet notice the difference, but I have several gaps along my eye lids (top and bottom) where the lashes are gone. Also, it is very difficult to take an in-focus photo of one's own eye lash gaps. My daughter thinks my eyebrows are also thinning, but I notice those changes less than the lashes since they don't insult me by first poking me in the eye on their way out the door.

peach fuzz does not photograph clearly

A new "symptom" I noticed today is that my head hair has apparently been replaced with super soft white/blonde peach fuzz. I say white/blonde because I'm trying to avoid considering the possibility that my hair grows back all white. I don't know if this peach fuzz is temporary or indicative of what will grow back eventually. The soft peach fuzz is mostly on the sides, but I still have very short dark stubble infrequently interspersed throughout. I assume this is the hair that didn't fall out when the rest did and thus got shaved.

I got some glazing done last week, I'm using the Mt. St Helens Ash mix on the sprigs

Today I had an ultrasound on my lump to determine the size. We knew the tumor had shrunk because the oncologist said so. I can't really distinguish it anymore which also makes me think it shrunk. The ultrasound person today said that they'd have someone else read the images and give the official measurements in a week or two. I, of course, already forgot the tentative numbers she gave me anyway. They seemed a lot smaller than what the MRI said and only a bit smaller than what the first ultrasound said. (I was kinda hoping she'd say "gosh, I can't even detect a thing. You must be full cured!") The only thing she really told me, which we already knew, is that the tumor has shrunk, but it's still clearly there. Today's ultrasound person also was unable to find the clip in my lymph node, but tried to find it in a bit of friendly competition with SCCA.

This guy is in the kiln now, I though it woud be easier to keep the glazes separate if I fired between applications

I wasn't able to see the ultrasound of the tumor during the first ultrasound in November, but today the screen was at an angle I could see. I had asked about getting a picture of the tumor, with the idea of maybe including the imagery in a sculpture. As it turns out, I have no idea how I would translate the image to a sculpture. On the ultrasound the tumor looks like a blank, black space between all the interesting bits of breast tissue. My tumor looked like a black, featurless gap in the shape of a tall isosceles triangle with fuzzy edges. It just seems like, for all the stress it causes, the tumor should look a lot more like something, rather than nothing.

The sculpture above with the sprigs fully glazed, before firing.

The other thing  was reminded of this week is that the staff at Northstar Lodge are so utterly, consistently wonderful to work with (or be worked on by). When I went in this week, the nurse asked about the heaviness in my chest I had complained about the week before. The other week a different nurse asked about my nephew because I had talked about him the week before. It is so nice to know that the nurses actually have a clue who I am. Of course it also helps that they are all very competent, efficient, and kind. I was chatting with a colleage who had experience there and she was effusive in her praise, but I have also been following the cancer progress of someone in a different city and it is just heartbreaking that folks have to deal with medical staff who don't know them, or give unclear information, or don't seem to care. And that's not even to mention the awfulness of billing errors. 

I under glazed the first batch of port-a-cath bulbs and I'm enjoying the brightness

We dealt with plenty of billing errors at Regional/Astria over the years, so I know where the baseline can be (sending the bill to collections instead of insurance, for example). I know our cancer billing experience has been helped by the fact that I have such a popular/well studied cancer and the care is pretty standardized, and also by the fact that we met our out of pocket maximum on January 13 this year (those growth factor shot's will get you), but stuff has simply been covered by insurance and the folks at both Ohana and SCCA have been quick to help us navigate billing errors or insurance rejections. And, amazingly, we've only had one billing error this whole time! Northstar hasn't had to talk to us about bills or rejections because all that's been smooth sailing.