First Taxol and Neuropathy

This past Wednesday was my first Taxol infusion. The plan for my 20 weeks of chemotherapy has been that I would have 4 rounds of Adriamycin and Cytoxan over the first 8 weeks and then 12 weekly infusions of Taxol. The last round of A/C was really pretty rough and I went into the Taxol pretty scared, actually. Though I had been told that the nausea and side effects should be less severe with Taxol than with the A/C, I was still worried that the cumulative effects would be too much. The nausea from each A/C infusion was worse than the one before and I was concerned that this week's side effects would be a combination of the worst A/C plus a not too bad Taxol.

wearing my new Joy Clark hat while waiting for my Taxol

Thankfully, that wasn't the case. I was careful about saying so in a public forum until after Friday passed, because the Thursday after a Wednesday infusion is usually better than the Friday and last time Friday and Saturday were both pretty awful. This week, though, Thursday was pretty great. It helped that the weather was very nice so I was able to go for three walks! That's, like, a record this year for me (the cold and the chemo stuff have been consipiring to keep me inside more than would be usual for me).

some porth-a-cath bulbs I've been playing with over the last 2 weeks

Wednesday after chemo I was pretty tired, though I blame at least part of that on the anxiety I had going into that day. In one of my cancer resources, I remember reading about "anticipatory nausea" meaning that feeling of nausea you get because you are scared of what's coming. I was feeling physically fine when I got in the car to go to chemo this week, but the moment I stepped into the parking lot at Northstar I started feeling queasy. Yep, that's anticipatory nausea. It lasted through the waiting room, through the blood draw, and through the wait for the Taxol infusion. This week I only had to go in to the clinic once (previous week's I've gone in Tuesday for blood work, Wednesday for infusion, and Thursday for a growth factor shot). This time I had blood drawn first, and then sat around, feeling anticipatory nausea, in the infusion room until they determined that I passed my blood test and could safely get chemo.

a sprigged (molded) element based on the port-a-cath that's in my chest for infusion

I did have a new symptom this time around that's been fairly unpleasant. This neuropathy started about a week after my last A/C infusion, but I didn't realize what it was at the time. The Northstar people gave me a list of symptoms that I need to notify them about within 24 hours, including neuropathy, but as I understood it, the definition of neuropathy was tingling and numbness in the hand. I started having pain in my fingertips around February 3, and by this Wednesday there was also some swelling in my fingers and I had lost some function. I didn't meet with my doctor this week, but I told the nurses about the pain and their reaction showed me that it was more serious than I realized.

the red lines at my joints show you where the fingers have been hurting (my fingertips are covered in clay dust, but that's not a symptom).

After I explained the symptoms, my nurse went back to talk to my oncologist twise and eventually another nurse came to examine my fingers. The nurse asked how long my hands had been like this, at which point I realized that they maybe looked a bit different than usual (red and puffy). Sean and I were both surprised by how concerned everyone seemed to be about the hand stuff and, unfortunately now I know why (it got worse). Looking back at the written directions from Northstar, I now see that they do mention pain in the fingers as a sign of neuropathy.

 

My fingertips have been really dry for longer than I've experienced pain and the other day I managed to score my thumb, probably with a clay tool, without noticing

What caused me to bring up the finger pain at Northstar this week was that I had reached the point where I couldn't use my fingers for everything they used to do. Specifically, my fingertips hurt too much to pop open hinged lids. In the shower I had to open a bottle by pushing the lid indent against the door handle (and which point the whole bottle, predictacbly, fell into the tub spraying liquid all over the shower). In the kitchen, I used the counter as leverage to open a similar lid and used a pliers to pull of the paper seal on top of the almond butter (I got almond butter for adding protein to a smoothie, my verdict is that almond butter is gross on it's own, and smells terrible, but is tolerable in a smoothie). 

Icing my left hand while taking a photo with my right. (this was before the infusion started, so I wasn't cheating)

During my infusion, to prevent the neuropathy from getting worse, they had me hold bags of ice. This is pretty annoying, actually, because the ice is just a bit too cold and starts to hurt which makes you want to let go of the ice. Also, while you are holding the ice you can't do anything else with your hands. I guess this is ok because during chemo I feel icky anyway and can't focus on a book or even much of a conversation. The only thing I seem to be able to do is listen to music which I can do hands-free. The idea of the cryotherapy (ice bags) is that the cold ice slows down the chemo getting to your fingers where it kills the nerves. This is the idea behind cold capping for hair loss prevention, too.

This week my long wait between blood draw and chemo meant that I was the only patient in the room for a while. I took a picture of the chemo room to show my daughter what it looks like since she's not allowed in.

My fingers felt better after chemo and they didn't really bother me on Thursday, but on Friday I woke up with my fingers feeling hot and painful especially in the joints. The joints looked red and felt stiff as well. I called Northstar, since they had recommended calling if I felt more symptoms. This was an increased intensity of an existing symptom, but I figured I'd let them decide if it was important. Based on what I could find online and my cancer books, it didn't look like there was much they could do except for cryotherapy. When I did get through to my nurse navigator, she suggested some Arnicare cream that is supposed to help with the pain.

the fact that this says it is "homeopathic medicine" makes me wonder, but I suppose it can't hurt

I asked her if I should avoid anything or do anything else like exercises my hand or hold ice. Apparently I need to avoid hot water, but otherwise there wasn't a lot I need to do. She did suggest squeezing things, so I reminded her that I work with clay and her enthusiastic reaction was that I should do that. So I'm pretty much loving that my assigned physical therapy is to work with clay, which I was planning to do anyway.

Though the form here was mostly built before I was told to squeeze clay, I did a bit of coil building (squeezing clay into coils) on the top yesterday
 

Working with the clay did hurt a bit, which is unusual, so I might soften it a bit before I work in the studio today, but its nice to know that there is something I can do and that it's not just hopeless that my hands are going to hurt from now on.

I tried using the port-a-cath sprig all over this bulb, it might be a bit much, though color may change how I feel about it.

When we were discussing my symptoms and they were describing neuropathy at Northstar they mentioned that this can happen in the hands and feet. My feet had been extra sore and dry but not nearly as paintful as my hands, possibly because I don't try to open jars with my feet. But another symptom of neuropathy is that one's fingers and toes can go numb. This already happens to my toes regularly. In winter my toes get numb quickly, but they can go totally numb and turn white in 70 degree weather, too. Apparently I already had some neuropathy or neuropathic tendancies, or whatever you might call it.

I started making these port-a-cath pieces because of how icky the port-a-cath is. More specifically, I can feel the tube inside my skin and that gives me the willies.  

Aside from the neuropathy, Friday was pretty good as far as symptoms. My criteria for "good" mostly hinges on whether or not I feel nausea, though I suppose I've also had headaches and fatigue and body aches at various time. This Friday my back was sore and my fingers hurt, but that was basically it. I was able to eat normally, though some things taste a little funny. I was also more tired than usual, but that seems reasonable.

The whole port-a-cath and tube thing makes me more aware of the invasive nature of the disease and treatment. In my sculpture before I've tried to explore the idea of mechancial and human-made enhancements to natural forms, but this time it is hitting closer to home and my feelings are much more squishy.