Week 6, Staying Strong

CW: Cancer, but also some ceramics again!

Last week I completed 3 of the first 4 chemo infusions and this week I'm about done with 3 of the first four periods of yucky symptoms. I go in for my last dose of Adriamycin and Cytoxan next Wednesday. This round was the toughest as far as nausea and appetite loss. Instead of feeling basically ok(ish) on Wednesday evening and Thursday, like the last two times, I felt pretty terrible on Wednesday and had to go to bed early. 

I worked out today. Very low or no weights, and no impact, but I broke a sweat and felt good at the end. This was about the first time that I got warm enough during a workout to take off my long sleeves, too (but not quite ready to let the chilly bald head out).

In previous weeks, the day after chemo I felt ok, then Friday, as the IV anti-nausea medicine wore off, I felt worse. This time around I felt bad right away on Thursday and had to take the other kind of nausea medicine. They prescribed me two types of anti-nausea medicine, one that's in the IV and one that isn't.  I can use the one for breakthrough nausea on Wednesday and Thursday then alternate the two starting on Friday.

I took this picture after one of my last workouts before beginning chemo. It's maybe a bit of a morbid before, in preparation for a weaker, less healthy after, but I honestly wanted to document those changes that happen during the process.

My nausea continued through Tuesday this week, and was accompanied by an aching chest and torso. I choose to interpret the soreness and pain as the cancer getting killed in that area. I'm not sure if that's exactly what's happening, but that's what it feels like and being in pain while believing that the treatment is working feels better than being in pain and believing it's because I've been poisoned.

I didn't read anything about cancer this time around. In fact, my notebook has directions telling me that I'm not allowed to read anything more about cancer. Instead my carefully curated book and media diet has been carefully curated to include mostly things that will make me laugh. Lots of people gave me suggestions in the last few weeks and I've been enjoying Derry Girls when I can't work up the energy to read and Terry Pratchett, Pride and Prejudice, and the Eyre Affair when I can. Ironically most of those books are rereads, but I've found that's where my patience is right now. 

So many books! Thanks to Linda, Julie, Heidi, Nialle, Shannon, Terri and Jane, but I've lost track of who sent the one on the far right (it didn't have the sender's name, but I think this person mentioned it in an email or text or FB message way back at the start of this journey).

My friends have also sent me books. I literally have more than half a shelf now of books sent or brought or gift carded by friends in both Washingtons (state and DC) and Iowa. I've also been gifted a puzzle from Spain (because Brooke knows that's the kind of interruptable activity that I can handle right now) cancer hats from Wisconsin and Washington, and ceramic yip yips from Minnesota (I know they aren't really the Martians from Sesame Street, but that's what these creatures by Jennifer A Murphy remind me of). 

My ceramic yip yips and one of several books sent by the lovely and thoughful Julie and Linda

During my infusion last week I listened to a meditation program for cancer patients, but that is soothing and doesn't count as reading about cancer. The meditation helped calm me down quite a lot actually, as I was pretty anxious and worried about this round and my reaction to it (I knew that the side effects were likely to get worse with each round). The thing I really liked about the mediation, which was aimed at breast cancer patients, was that it mentioned how to react to the stupid things people say. Basically, it said we might not know why people make these suggestions, but we don't need to pay attention.

the meditation I used last week

The night before chemo I had worked myself into a borderline freak out about whether the chemo was working, etc. I ended up chatting with my friend Linda who asked some strategic questions that managed to calm me down quite a bit. She asked me what evidence I had for my worries, and when I went to actually list the evidence it dissolved around me. I also took advantage of talking to the social worker when she came around during my infusion and that helped a bit too, but by then I had some evidence to contradict the worries of the day before.

The next day, when I met with the oncologist, she asked if I felt the lump shrinking and I said no, not really. But she felt both the lump in my breast and the lymph node under my arm and said she felt they were shrinking. My knee-jerk reaction was to think that she was just placating me, but she honestly doesn't seem like someone who is overly optisimistic or would say something just to make me feel better. She's a bit brusque. When I first met her she said something to the effect of, you're smart, you've already talked to the SCCA (Seattle Cancer Care Alliance) people, you don't need me to tell you all of it again. I was a bit taken aback, but her plan matched the SCCA plan and straight-forward and efficient seem like good traits for a doctor.

So many books from The Haunted Bookshop in Iowa City by way of Heidi and Nialle!

Anyway, I posted about what my oncologist said on Facebook and presented it as good news (because it is). Here's where my community again comes in to bouy me up. I suggested that she's probably better than me at gauging the size of a lumpy thing inside a squishy thing. My friends Shannon agreed and argued that gauging the size of a lump in a breast is a bit like learning to throw pots; it takes practice. It's a good and helpful comparison. Of course an oncologist is better at judging lump size. I'm better at throwing pots because I practice a lot, but I also don't have an emotional and fear reaction when I'm throwing a pot. I'm guessing my brusque and intelligent oncologist isn't in pain or terrified when she checks the size of my lump, and she's got a lot more practice than I do.

I also got a second bit of information that day that made me feel better and function better through some of the side effects from this round. When I go in for an infusion, the first thing I get is IV steroids and anti-nausea medicine. Then comes the chemo poisons. One nurse gets my port accessed and starts the steroids/nausea medicine, but two nurses have to check the chemo before it gets hooked up. I'm a big fan, by the way, of this approach. The first time my Adriamycin was labeled incorrectly and they had to send it back to the pharmacy. It makes me feel safer knowing there are three people involved in verifying what I'm getting is correct. 

On the advice of a friend, I bought a silk scarf because they said it felt good. It's true, but the added advantage is that my young neighbor thinks I should have more hair so she can style it. This scarf is long enough to style into a very long ponytail. The only trouble is that she didn't leave much on my head, so the first picture I took didn't really show what she was excited about.

Last Wednesday, as they were checking my information and my drugs, the one nurse started saying that what she was looking at on the computer was "way way good."  I asked what she meant and she said that my immune system numbers were "way way good."  Earlier the oncologist had told me my numbers. My white blood cells were up becaues of the growth factor, I am slightly anemic and something else was a bit low. I didn't understand what she was saying except that I was cleared for more chemo. The nurses phrased it in a way that made me feel a lot better about the situation. I'm guessing my numbers are "way way good" in comparsion to other chemo patients, not, like, the general population, but I'll take it. 

My friend Nina brought me this ultra snuggly warm hat. I think she heard me say that I had to wear two outside. This thing is sooo soft on my bald head. It feels great and keeps me very warm.

I feel that I can interpret "way way good" immune system numbers as a sign that I'm doing well, but more specifically, I can choose to interpret that as meaning that I'm doing what I should be doing. I'm not teaching this quarter, which I think is good, as I'm feeling sick for 5 days in a row, but it also means that I've got more time to myself on the days when I am feeling ok. As I like to keep busy and have some kind of structure to my days, I've been assigning myself the work of eating, drinking, walking, and generally trying to take care of myself (although the baseline for that is different than it used to be). 

I've been keeping a log of symptoms in this Personal Health Tracker for Cancer patients that showed up in our Little Free Library. (I'm convinced someone who knew I was dealing with cancer left it specifically for me. Thanks unknown person!) I've also been tracking other kinds of things I'm doing for my health in my own notebook. My motivation is that I like checklists, but also I figured I might be able to kind of gauge whether things I've been doing are related to symptoms or how I'm feeling. I'm also supposed to drink 3 liters of water each day and as that's a lot, it helps to write it down. So far the main thing I've learned is that on the days when I feel particularly bad, I just don't write anything down. 

the tracker that was left in our little free library

The things I think I'm doing for my heath are drinking enough, eating (maybe not enough, but better than if I didn't have eating as a goal), doing some kind of meditation, yoga, walking or exercise (though this has been surprisingly difficult for someone who is used to walking to and from work and working out pretty before breakfast most days). I also figure that reading for pleasure and trying to do something fun or creative are also helpful.

The exercise has been the biggest surprise for me. I remember when I was newly pregnant and was very frustrated that I couldn't keep up with others on a walk or a hike. I honestly didn't feel that being not hugely pregnant should make me get winded so fast.  I feel similarly on the chemo. I'm 3 infusions in to a 16 infusion cycle (or 6 weeks into a 20 week ordeal) and I already am finding it challenging to go for a short walk around Davis. A half hour yoga session requires me to take breaks and I'm basically never getting 10,000 steps, though before the chemo my daily goal was 12,000 and I often got much more. Obviously the freezing fog and unpleasantly chilly weather (and ice, and snow) is impacting my walking, but I'm still frustrated aboutmy lack of walking endurance. 

my symptoms tracker in the Write Track book

The main identifiable symptom is nausea, but that seems to manifest as both nausea and indigestion (even when I haven't eaten much). I'm still exploring the possibility that small amounts of dairy are at fault for some of the indigestion.  The ice cream last time around knocked me out for two days of severe indigestion. Since then I've been avoiding all milk and ice cream, but I'd still been using a bit of butter and small amounts of cheddar cheese until yesterday when I realized that the previous days' symptoms (indigestion, sore back) were pretty similar to the ice cream symptoms. I decided not to have any more cheese, and though I felt better yesterday, I was also on schedule to feel better, so it's hard to know just yet what's the cause. Also a lot of food I usually eat has dairy in it!

I am also waking up with headaches. I take medication for migraines, which used to interrupt my life regularly. I've been pretty good with them for a number of years because I know my triggers (stress, too much or too little caffeine, lack of sleep, etc) and avoid them. Waking up with a headache isn't all that unusual for me in times of stress, but I feel frustrated because I don't think I'm that stressed except for the, y'know, general having-cancer stress. And maybe a bit of my-nephew-has-cancer stress and I suppose when I can't get through my breakfast I don't finish my tea (not enough caffeine) and when I don't feel good my sleep is a bit interrupted.

I also have soreness all over for days after the chemo. This time I know it lasted through Saturday, but Sunday and Monday were the days when my discomfort or my mood prevented me from writing anything down until after the fact. I also have bone pain. This comes from the growth factor. The first round it started exactly a week after the chemo. This time I felt like it started earlier, but before the pain in my back happened both as a symptom of eating ice cream (lactose) and from the growth factor, so it's a little hard to tell whether the growth factor or the cheese got me on Tuesday. The bone pain was pretty strong yesterday and was not accompanied by indigestion, so at least that's a known cause. Somehow it bothers me less knowing that the growth factor is responsible for that pain.

my own water/medicine/activity tracker

I feel like my symptoms are both minor and sucky. I often feel that writing here helps me think through things or see them in a way I haven't before. Kind of like when I was chatting with Linda and she asked me some questions and my answers made me realize I was feeling differently than the evidence warranted. So I've been feeling like I'm being pretty unreasonably whiny about minor symptoms like pain and nausea that are either eliminated or severely reduced when I take medicine for them. And the other symptoms of getting winded, feeling indigestion, and generally feeling low all feel like things that should be within my control. Maybe if I had walked more when I was feeling really bad I would be able to walk more now. I can vaguely recognize that maybe I'm being harder on myself than warranted, but writing out what I'm feeling in words (not just a chart) helps me gauge the size of the issue. I've got four paragraphs of symptoms. Maybe that's not nothing. Maybe I should be a little gentler on myself.

Ok, but it wasn't all moaning and feeling awful this week. I also managed to find a narrow lever of motivation, wedge it up onto a tiny little fulcrum of energy, and slide myself into my studio this week. I wasn't sure I was up for throwing (wedging, lifting, cleaning, pushing, all in a studio not connected to central heat, and then needing to trim the next day seemed like too much commitment). 

plates waiting to be fired

Instead I inched my way into the studio with little tasks. The first day I cleaned bats. I'd thrown some plates back in October or November when I thought I could make Christmas gifts this year, but I'd never gotten around to cleaning up. The next day I prepped some too dry clay for the pugmill. A few days later, I pugged some clay and used just a bit of it to start a couple of small sculptures. Turning on the space heater earlier in the day and knowing my clay is waiting has gotten me into the studio most days this week. And making with clay just makes me feel better. It's not exactly exercise, but it does feel like medicine. It feels like being me. I didn't set myself much as a goal other than spending some time on these. I figure at this scale with two pieces, I have time to finish the building and work on the surfaces before I go in for my next chemo. I'm guessing I won't want to work on them after that. 

an awkward vase (in progress) based on a sketch from years ago

Getting into the studio provides a mental and physical change of pace to my day and gives me something pleasant to do. It also gives me time to listen to an audiobook without getting distracted and takes my mind away from thinking about cancer or chemo. Of course it helps that the orange cat likes to come in and jump up on the table when I'm working. 

A kind-of cactus I wanted to try again after the first one broke

I was scaring myself again this week, so a change of activity was useful. My friend started chemo with the type I will be having for the last 12 weeks. Her dose is higher than mine will be, but she had a really tough week and that's been scaring me a bit. I was hoping that my next dose will be the worst of the whole 16 as that's what one of the nurses suggested. My next one is the last of the Adriamycin and Cytoxan together. After that it is 12 weeks of Taxol. 

When she was giving me my growth factor shot, the nurse said that I wouldn't need those shots during Taxol because it will be less hard on my immune system. Actually, she said something along the lines of "woah, you're on the tough one now." She also indicated that the nausea won't be as bad on the Taxol. 

I started to work on the final glaze layer for this guy, but there's something wrong with how the second layer of underglaze stuck, so I'm not sure I want to mess with it. Clay is more fun than underglaze.

But my friend's experience was scaring me, so I called my other friend whose done Adriamycin/Cytoxan and Taxol before. She calls the Adriamycin the "dreaded red" and indicated it was pretty rough for her. She actually had to check whether she'd done Taxol and then indicated it wasn't as bad as the A/C. That matches what the nurse and doctor said, but it's nice to have confirmation from someone whose been there.  

It was a balm to talk to her, and not just because she had good news about Taxol. There's something about talking with someone who has had the same experience or who is having the same experience that can be helpful, but especially so if they have insight about how they think about the whole process. Her advice was to try to focus on one day at a time and not try to think too far ahead. I like to be in control, have a long-term plan, and know what's coming up, which cancer and chemo don't really allow for. Sometimes talking with someone who has also struggled with the changes that cancer and chemo forces can feel both validating and refreshing.

I talked to my brother this afternoon, too, and we agreed that maybe it's not important to have the "right mindset" but the right mindset for you. Some of the overly cheerful or everything happens for a reason stuff makes me want to punch, but I appreciate that it works for others. The way I like to think about the pain in my chest as evidence of the battle going on inside might not work for everyone, but it works for me. Realizing I've been doing this for 6 weeks already (wow) makes me feel like I've accomplished something and thinking about my strong body and "way way good" immune system (so far) make me feel like I do have some control (and I don't need to hear if that's likely to change or whatever).