Monday, February 28, 2022

Taxol vs A/C and Savi Scout Fail at SCCA

cw: cancer
studio assistant (getting in the way)


Taxol vs Adriamycin/Cytoxan

This week I finished my 3rd infusion of Taxol. The side effects of the Taxol continue to be much milder than the side effects of the A/C infusions. After the first round I had some problems with my hand which we thought were neuropathy. After I saw my oncologist, she indicated that it might not have been neuropathy from the Taxol. but might have been "hand and foot disorder" as a leftover reaction to the A/C.


peeling skin from hand and foot disorder (or neuropathy)

The hand problems are getting better, which doesn't clarify what the cause was. My fingertips had been sore and starting to get dry and brittle during the A/C, but the pain and heat in the fingers started up in between the last A/C infusion and the first Taxol. During each of the Taxol infusions I've held on to bags of ice, which is supposed to keep the chemo from damaging the neurons in the fingers. 

I've also been putting Arnicare cream or Aquaphor on my hands several times a day. The tips of my fingers a quite a bit better, but it seems I have to be much more diligent about keeping them moisturized than usual. Usually when I'm teaching in the clay studio in winter, my hands will get pretty dry from being outside and from being in and out of the water all day. But I've never before had the tips crack as much as they have this month. I don't remember the skin literally peeling like this, like after a sunburn. Lucikly, the pain and heat only lasted about a week.

Darter tolerates me in small doses; she was curious about my bald head

The nausea is the best thing, in that it has mostly gone away. I was feeling so good last week that I put away my nausea medicine (meaning I took it off of my desktop medicine stash and put it in the cupboard). This Friday I had to get it out again, but just once, which is still an improvement over A/C. 

The quantifiably good news this week was that my anemia is better. My hemoglobin and related numbers had been steadily dropping since I started chemo, but this week they finally moved up. I'm still anemic, but not as bad as last week. The increased hemoglobin numbers also mean that I'm less likely to need an intervention in the form of blood or blood products, which is what I was a bit worried about last week.

I don't know if anything I did helped with the anemia. I asked the doctor what I should do and she said there wasn't much I could do, but I made some adjustments in my diet anyway. We replaced our broken blender a few weeks back so that I could make smoothies when I wasn't feeling like eating. So now almost every morning I'm having a smoothie with a whole bunch of spinach and some wheat germ, along with whatever fruit we've got. I also tried to eat more protein in stew or soup or other meals over the past week.

Buddy can be a snuggly guy, until he bites (surprise!)

My oncologist had indicated that the anemia shouldn't be as bad on Taxol. Either way, time passing or my diet adjustments made a difference and that feels good. I'd been feeling the effects of the anemia when I go for a walk. I get winded more easily and have had to take breaks or even call for Sean to pick me up. Around the time of the last A/C or first Taxol, I had a bunch of conversations about all the symptoms that were worrying me, including being out of breath. It made me feel better to know that the anemia was the reason I was out of breath. It made it less scary, really.

third taxol

Also that week, after 8 or 9 weeks of chemo, I finally got a specific number for where I should keep my heart rate. When I first started seeing doctors about my cancer treatment, both in Seattle and in Yakima, I asked about excercise and how much I could continue to do. Both oncologists said I shouldn't work out too hard or bring my heart rate up too high, but were a bit vague about what counted as too high. I got the impression in Seattle that I shouldn't take spin class, but that leaves quite a bit of leeway between going for a walk and doing some kind of high intensity exercise. 

As I've continued to do chemo, my energy has waned a bit, but I've still been unsure what is allowed or reasonable.  Last week the nurse navigator told me I shouldn't let my heart rate get above 140. It has been nice to have a specific number, especially as I now can get my heart rate above 140 just by walking down the street or doing yoga at home.

All the cats like to come check out what I'm doing in the clay studio, especially right before dinner time

Last weekend my daughter and I walked to the downtown library. We'd done this the weekend before, too, and its a bit shorter walk than the walk to school which we do most weekday mornings. Last weekend, armed with the 140 number, we made it less than 2 blocks before I needed to take a break. On the whole walk, we needed to stop and let me breathe maybe 5 or 6 times. My husband ended up picking us up at the library because I wasn't sure I could handle walking home (or it might take forever).

This was the worst I had felt just walking, though I'm pretty sure my heart rate would have gotten higher the week before (when I forgot my watch at home). This week I hadn't walked as much because the schools were on midwinter break, it had been cold, and I had to go to Seattle on Thursday. Today I went for a nice long, slow walk to check out a new (to us) little free library and I only had to slow down twice to let my heart rate get below 140.

a sculpture I've been working on in the past weeks

Savi Scout Fail

The trip to Seattle this week was a bit ridiculous. In November, when I had my biopsy in Yakima, the people at Ohana put markers into my tumor and into the lymph node that they biopsied. These markers were meant to identify the location where the biopsy was taken. If the biopsy showed no cancer, these markers could be seen in future mammograms and show that these anomolies had already been checked. If the biopsy showed cancer the markers could help identify what needed to come out, at least I thought that was the plan.

For reasons I only partially understand, the Seattle Cancer Care Alliance (SCCA, where I plan to have my surgery), wanted to put in a different type of marker, called a Savi Scout, into my lymph node. They called me a little over a week ago and scheduled the appointment for this past Thursday, then they called again (four times) that day and wanted me to come in the very next day as there had been a cancellation. We determined that skipping chemo for this procedure didn't make sense, so I waited until this week.

after I started adding texture on the bottom of the sulpture, I broke my sprig

It seems like this procedure is usually done before chemo begins, or very early in the chemo process. It sounds like it is also sometimes done shortly before surgery, but I think that's for folks who aren't doing neoadjuvant chemotherapy (before surgery chemo). I'm not sure why SCCA didn't have this Savi Scout put in in December or even January, though I suppose it might have been a miscommunication or a difference between how things are done in Yakima vs Seattle. 

Regardless, we went to SCCA on Thursday this week to have the Savi Scout put into my lymph node. My oncologist had already indicated that she couldn't detect any swelling in my lymph node any more. Both the lymph node and the tumor in my breast appear to have responded positively to the chemotherapy treatment. I asked my oncologist last week if SCCA would be able to put in the Savi Scout if she couldn't detect the involved lymph node anymore. She seemed to think it would be fine.

once I broke the sprig, I had to figure out what to do with the bottom section

When we got to SCCA, they had a doctor come in to use the ultrasound to find the old marker in my lymph node. This first doctor seemed a bit unsure of herself and didn't feel confident that she had found the marker. So she brought in another doctor. I think he was an attending, but I'm not totally sure of the difference between doctor ranks. This doctor seemed very confident and happy to help. So he looked for the marker with the ultrasound machine. He agreed with the first doctor that the thing that might be the marker wasn't clearly the marker and that together they didn't have confidence in identifying the right node. So they decided to talk to my surgeon.

My surgeon was out for the week, so they came back with a third doctor, this woman must have been some third level doctor as her confidence sort of glowed out of her. She took over the ultrasound, looked a bit and agreed with them. All three doctors asked me if I could help them by remembering where the mark was from the bioposy. They couldn't find a scar from the biopsy because the procedure was in November and tiny needle marks heal in 3 months.

I ended up mixing up the sprigged texture on the bottom section

The upshot was that they simply couldn't do the procedure because there was no visual evidence of cancer in any of the lypmh nodes and no sign of the original marker. Three different people squeezed goo on my armpit and searched with the ultrasound wand thing. I got to see my arm muscles and lymph nodes on the screen and I agree that nothing looked like anything. I got to hear the same information from an increasingly senior and more confident doctor, but the result was the same. They didn't put in a Savi Scout.

I wonder what this particular bill will look like.

Though driving to Seattle for basically nothing might not be my first choice activity, the "problem" that caused the trip to be in vain is, ultimately, that I don't have any evidence of cancer in my lymph nodes (and also that my body seems to have absorbed or hidden the marker thing). So I can't be too upset about that part. I'm just over halfway through my chemo treatment and clearly the cancer is responding the way we want it to. My daughter suggested that my immune system is so strong it consumed the marker.

I had planned to use the port-a-cath in this sculpture as well, but chose something easier once I got started

All three SCCA doctors assured me that not getting the Savi Scout wouldn't be a big deal. If I understand correctly, they will still take out some lymph nodes during the surgery. They'll do a procedure to identify the "sentinel node(s)."  I believe this amounts to putting some dye stuff in the tumor and tracking where the dye drains to. The lymph nodes that the breast area drains to first are the sentinel nodes. We've got a bunch of lymph nodes in our armpit areas and this procedure helps the doctors find out which nodes are mostly likely to have cancer in them. Then they can remove just the lymph node(s) that are likely to be a problem and not the rest.

Back in the day, they used to take out a whole bunch of lymph nodes which could lead to lymphedema or swelling in the arm. By removing just a few, they can reduce that risk of swelling. The Savi Scout would have allowed them to take out the sentinel nodes and the previously biopsied node, but the previously biopsied node might be (probably is?) also a sentinel node so it may come out regardless.

building without a plan, and adding repetitive textures, feels comforting in a way that building sculpture that is trying to communicate something about the feeling of cancer is not

As I understood it at the start of this whole process, the neoadjuvant chemotherapy had three main goals. First, and most important, was the goal of eliminating cancer in the rest of my body. Scans of my bones and body didn't reveal any evidence of cancer anywhere else in my body, but there was still the risk that there was a little bit of it somewhere that could grow in that new location, causing the cancer to spread.

The second goal was to reduce the size of the cancer in the lymph node, possibilty eliminating it. The third goal was to reduce the size of the tumor itself. As I understood it in December, the doctors thought they could do a lumpectomy (cut out the lump rather than the whole breast) even if the tumor didn't shrink and the tumor was unlikely to go away with just chemo. I think I thought that the lymph node might get smaller and might even go away.  

I did want the form of this sculpture to suggest hiding or curling up on onesself for comfort

As it turns out, the lump is smaller and the lymph node appears to have no cancer. I have to assume that means good things for any bits of cancer that might have been left in the rest of my body. All of this is clearly good news. I can't tell if it is better than expected or about what we expected. 

The good response so far does make me wonder if I need the full 20 weeks of chemo. It has always seemed like a long time. At this point it feels doable, but it still feels like I have a long way to go. The doctors assured me that even if my tumor is gone after surgery, I still need radiation, and I understand that my treatment regimen has been tested and found to be the most effective at preventing recurrence (the cancer coming back), but at the same time, it feels like a lot.

the head section of the sculpture rests on the body and is only visible from certain angles

As for the Savi Scout procedure, apparently they've only been using it to mark the involved lumph node for about a year.  Had I been doing this process a year ago, I wouldn't have had the Savi Scout anyway. On the other hand, had we caught the cancer a year ago (like, had I started mammograms at 40) I'm thinking that the whole process would have been shorter and less unpleasant. PSA: Ladies, get your mammograms!

texture detail

















 

Wednesday, February 16, 2022

Port-a-cath Sculpture

CW: needles and blood


my most recent sculpture, nearly finished

I started this sculpture without a real plan. Building feels good and in the week after my last, roughest, round of A/C chemo, it felt good to get into the studio and squish clay. Shortly after I started it, though, I got thinking about how to communicate the feelings of going through chemo, visually, in a sculpture.

port-a-cath bulb

My friend Cheryl prompted me to start thinking about what I would make during this time and how making could be therapeutic or part of the process of going through cancer treatment. My initial thought was to do a kind of daily journal or art-a-day making process where each bulb I made would have a visual representation of chemo: needles and vomit bags and, breasts and lumps. I've done something similar with my protest/patriot/politics/resist bulbs.  But how do you represent not eating? But before I'd thought too far, I realized that I didn't want to do this. Not only are a lot of the real feelings of chemo hard to represent visually, but the things that are easy to represent seem trite. Everyone already knows that breast cancer and chemo is about needles and vomit and breasts and pink ribbons. Plus I've already done a vaccination bulb. Yawn.

alternate port-a-cath design bulb

What do I really think about when I think about my cancer and my chemo? It's the port-a-cath that's in my chest. I think about this thing all the time and as my Aunt Di phrased it, it gives me the "willies." I don't like needles and IVs and blood and all that, but all that is exactly what we have to do all the time for chemo and most of that comes through my port. For my pre-chemo blood draw, a nurse "accesses" my port. To be clear, she takes a needle and sticks it into this medical device that's been semi-permanently implanted in my chest. Ick. 

port-a-cath bulb variations

Then the next day another nurse accesses my port again for the chemo. I could leave the port accessed, but then I'd spend the entire day and night in between feeling this thing hanging out of my chest and I can't handle that kind of ick factor. They would cover the accessed port with this huge plastic cover thing, like my chest has a big sticky saran wrap cover over it, but I get the heebie jeebies just thinking about the port getting accessed, I would not feel comfortable actually having the physical thing just sticking out there for a full day.

Overkill port-a-cath bulb

From the outiside, the port looks and feels like a lump on my chest. Ironic, isn't it, that to remove a lump from my chest (breast), we've implanted a lump on my chest (upper)? Having this lump on my chest, under my skin is strange, though less strange than I thought it would be when I thought they were going to have the plastic/silicone part sticking out of my chest with a little cap or something they opened to access it.

scupture in progress with the port-a-cath and catheter lines in place

But the thing that consistently creeps me out about the port is that I can feel the tube that connects the port to my vein (artery? idk). I can feel this tube, hose, catheter thing under my skin. I can feel how it comes out of the top of the port and then dives down into my anatomy somewhere. The idea that this is just under the skin, that it is not me, that only a thin layer of me protects it, and the idea that this thing goes into my blood stream, all of that I find gross and scary to think about. It makes me think how fragile human bodies are, at least when competing with sharp tools.

catheter lines disappearing into the surface

The first time my port was accessed, for my first blood draw, it didn't work correctly right away. My (possibly warped) understanding it that the catheter line was kinked inside my body, like a hose that someone has bent to stop the flow of water. The nurse had me move my arms and neck to try to fix it, which worked, but she also had to recline my seat for me as the edges of my vision faded to grey because the idea of a kinked hose inside my body made me feel faint. 

twisty, wrapping, icky medical hoses

The fact that you can fix whatever the problem is by moving around makes me think that you can also cause problems by moving around. Did I cause this by exercising after the port-a-cath was put in? Should I hold my shoulder really stiff now, for, like, the rest of my treatment so that my hose doesn't kink again? The nurse said this wasn't necessary and it hasn't been a problem since.

these little guys were my first try with the port-a-cath forms

As you can perhaps tell, the feelings I have about needles and implanted medical devices that can be felt through the skin, and blood, and tubes inside my body are strong. The imagery of the port-a-cath really encapsulates my kind of curious, queasy, disgusted, fascinated, uncomfortable feelings around chemo. The port-a-cath and the catheter lines themselves capture what chemo feels like to me much better than would a regular needle, though I've been poked with those plenty of times during this process, too. An emesis bag or a bottle of pills might communicate something about the routine after chemo, and might communicate to an unfamiliar audience, but the port-a-cath is this very specific medical device with very specific feelings for me.

the port-a-cath placed roughly on what I think of as the chest of my scupture

And I think those feelings hold somewhat true for my fellow cancer patients/survivors/caregivers. I tried out an experiement the other week. After making a model port-a-cath on which to form a sprig mold, I shared a picture of it online and asked if folks knew what it was. I specifically tagged my cancer/chemo friends who immediately recognized it and shared stories about their experience. Folks who presumably hadn't had experience with cancer/chemo that requires this type of infusion offered other suggestions for what it was: a lawn sprinkler, a UFO, or a wine stop.

catheter lines weaving into the surface, photo right after the top fell off

I also really wanted to capture the way the catheter line goes into the body. Visually, I don't think that leaving the port-a-cath and the line under the surface of the clay would communicate, so I tried to make it look like it went in and out of the surface of the form. Now that I'm finished with it, I'd like to see more variety in the depth of the line. I could try to make parts of the line appear to be just below the surface and that might capture the feeling I'm trying to express a little more clearly.

lines weaving under one another

Obviously the real thing is much less impressive looking under my skin. I've got a scar from the surgery and then a bump. It so unimpressive that I've been unable to take a picture that really communicates what it looks like (the picture just looks like a scar line). I don't think someone looking at me could see the line of the catheter tube under my skin, so I've tried to exaggerate beyond the look of the thing and the real physicality of the thing to the way it makes me feel to know it is there (or to know that it needs to be adjusted to work right).

As the sculpture is about bionics, a mechanical sprig mold makes sense for this sculpture

For many years, I've been trying to explore, in my sculpture, the place where nature and machinery meet: bionic additions to natural forms or mechanical or human made elements. How ironic, then, that I have become a natural form with a human made element added into my biology in order to try to improve my life. Life imitates art, in this case.

the scullpture pre-sprigs and while I was tring to sort out the surface

This sculpture, in particular, felt like it got away from me a bit. I think that's a normal feeling when trying to explore a new space in art making. I wanted the surface to feel like it was getting out of control in a creepy kind of way, but in the meantime the form got a bit out of control, too. In fact, I had to support the top with a lump of clay (we'll call it an external armature to sound fancy) after it fully fell off at one point. It fell off because I was rushing the day before my last chemo because I wasn't sure if I'd feel up to working on it after.

the block of clay won't be there after firing

The surface also got away from me on this one. I didn't entirely have a plan for how the surface would be once I added the tube lines, but I found that I couldn't smooth the surface next to the lines as well as I would like. This happened in part because of timing. I did take the day of chemo off from the studio, which meant the surface had dried more than I wanted it to. When I came back to it, I kept gouging the lines themselves or scratching the surface. I had to go back and do a lot more repair on this piece than I usually do. Part of the need for repair was the newness of the idea, but part was also my irregular studio time.

shortly after the top feel and I had to trim it down to replace it

The other day someone suggested to me, half joking, I think, that not teaching during my chemo is a bit like a sabbatical. They're right in that I've got time away from work, but I took a sabbatical about 7 years ago and this is not like that. This is like a sabbatical except instead of travel or deep exploration of a research topic, I go to the doctor a lot and and feel sick and cold and tired a lot. The moments I have for exploration of a research topic (working in my studio), are interrupted by pain, nausea, and exhaustion. 

tedius texture being added around the port-a-cath

When I took a sabbatical back in the day, I had my research idea mapped out ahead of time, as well as my timeline for the work. I was able to devote my entire day (at least barring child pickup and drop off) and my entire week to the studio. I felt physically and mentally strong and was able to work on quite a few items at once. Working all day and on multiple projects at once is pretty normal for me in the summer, too. Now I have trouble getting into the studio daily and have to limit the time I spend in the studio when I'm not feeling well or simply feeling tired or sore.

neuropathy in my finger joints

The nausea kept me out of the studio for up to a week every other week during my A/C chemo cycles. I've felt much better on my first Taxol cycle, but I've struggled with neuropathy (pain in my hands), soreness in my body, and general tireness. It's frustrating to go from doing a lot every day and every week, to feeling like you can't do as much. I was telling my family the other day that I felt like I wasn't sick enough to deserve to do as little as I was doing. My husband's response was to tell me I could help him in the garage. My mom told me I was allowed to rest. (Reader, I took my mom's advice.)

adding texture with the small tool


This week I've felt very lucky not to have nausea, like at all, but I have had neuropathy and pains in my chest. I'm hoping the check pain is indigestion, but it is still uncomfortable and when the pain radiates to my back, it makes working in the studio uncomfortable. The end of this project was somewhat conducive to making the back pain, in particular, worse.

larger texture tools (the bottom two are pin frogs for flower arranging)

On this project, since I was having trouble with the surface, I decided to apply a fine texture that will allow me some subtle color variation with underglazes later on. The process can be sped up with some texture tools (pin frogs for flowers and whatever the square thing is), but these only work on large flat or convex surfaces. When I try to use them in narrow spaces or inside curves, they don't reach or they bump into the catheter lines I'm trying to keep clear, so I need to switch to a much smaller tool.

applying texture one dot at a time inside the area where the other small tool won't reach

Applying this texture took me about three days, with lots of breaks. It took me longer to apply the sprigs on the top, both because the sprig mold became too saturated and needed to dry for a bit and because I kept hurting myself. My fingertips are particularly dry and sensitive, probably as a side effect of chemo. I'm not sure if this is part of neuropathy or a separate issue, but the upshot is that my skin breaks with minimal contact. 

trimming sprigs

I use a needle tool to cut the edges of the sprigs I added to the top of the sculpture, but at one point I stabbed my finger with the end of the needle tool. On another occasion, which I didn't even register at the time, I scratched my thumb with one of my scoring or texture tools and it left score marks on the thumb for over a week. These little hurts are par for the course and fingers often get slightly injured in the clay studio, but my typical response of letting the clay get rubbed in and moving on is maybe not the best plan now. 
layered sprigs on the top 

All the chemo take-home paperwork tells me that I should avoid cuts and bleeding. I'm supposed to limit the opportunity for infection and I think there is some concern that I could bleed too much. They specifically say to avoid contact sports and power tools. Obviously clay isn't a contact sport and these tools aren't powered, but it does make me worry more than usual about infection, so I try to wash out cuts and keep them covered as best I can.


finished form


I'm about ready to head to my second taxol appointment. This will be the 10th week of 20, though only the 6th infusion of 16. I'm feeling optimistic about symptoms based on last week, though the nurse yesterday made sure to tell me that I could still have an allergic reaction to the Taxol. Gee, thanks for that comforting thought. Wish me luck.

Saturday, February 12, 2022

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.