Loss of Taste & The Anticlimactic End Days of Chemo

Tongue Neuropathy

It is strange how distracting it can be to have lost most of one's sense of taste. This is my newest chemotherapy symptom and with any luck, it might be the last new symptom. I noticed that the taste of some foods, like M&Ms, changed early on in the treatment, but fairly suddenly a few weeks ago I started losing whole categories of taste, starting with the taste of meat.

I've been working on this sculpture for weeks and weeks.

As of right now, I can't taste meat or cheese; apples, milk and peanut butter taste funny; and lots of things just have far less flavor than they used to. I had a tuna sandwich with veggies from Subway and the whole thing tasted like water (the tuna, the cheese, the bread, the mayo, the salt and pepper, the tomatoes, the peppers). The only thing I could distinguish was the one lone onion (I didn't order onions). The other night I made twice baked potatoes. (I appear to be getting over my lactose intolerance, as I can handle cheese now, though I haven't yet tested it with ice cream.) The potato, cheese, and broccoli all tasted about the same. I pretty heavily salted the skin of the potato, but even so, I mostly distinguished texture rather than flavor. Even water tastes funny.

I'm having real trouble getting into the studio regularly enough to work on it, both because I don't always feel good and because of motivation

Tuesday, when I saw my oncologist (for the last time before treatment ends!), she said that it was probably neuropathy. Tongue Neuropathy, I did not know that was a thing. This makes sense, as my tongue has felt numb for a while. She recommended I chew on ice during my taxol infusion this week, which I did, but the symptoms don't seem to have improved. They may have gotten a bit worse.

I've now let it go long enough that I'm battling against the surface which is drying out on me between sessions.

My mouth feels dry and strange, so I try to have a snack, but then my mouth feels dry, strange, and has a funny taste. I tried some watermelon one morening and though it tasted ok when I ate it, the lingering flavor was strange, and didn't go well with the fuzzy numbness. The feeling makes me want to remove my tongue from my mouth, really, or maybe just find a way to bring moisture back. I did discover last night that pears are tasty and didn't leave a lingering funny taste or feeling. Of course the timing (how far away from treatment) might impact my results.

Around the top I planned to add enough catheter-like tubes to look like a whole separate texture, but as I added them when the work was drier than planned, I'm struggling with them a bit.

Just Two Infusions Left (but more blood draws)

I have now officially finished 10 Taxol infusions, for a grand total of 14 chemo infusions and 18 weeks of treatment. I have two more Taxol infusions and then my chemotherapy journey will be over (or, perhaps I should say a week or a few later, once all the symptoms fade, my journey will really be over). I am very, very, very, very ready to be done. I've been having a bit more nausea, and that plus the dry mouth/numbness/taste just makes me more and more anxious to have this part of the journey be over.

I haven't given up on the sculpture yet, but I'm less confident in this one than in most things I make.

Last week, during my blood draw, I was chatting with the nurse and said that I only had 2 more blood draws after this one. She responded by pointing out that I would have to continue to get blood draws after chemo ended. Party pooper, she is. Sean, my husband, thought I should have realized that I would still need blood draws, but it caught me by surprise. Apparently I'll have to check in with my oncologist every 3 months for a while (I forget what she said) and then every 6 months after that for a while. And she'll want to check my blood. Boo!

The surface looks really rough now, but I still kind of think I can bring it back.

I tried to ask if I could keep the port-a-cath in my chest (because blood draws out of the arm are icky), but she seemed to think I was asking for it to be removed. Understandably, I suppose I should want it out, but the port draws are less icky, in my experience, than the arm draws. I suppose a blood draw from the arm won't be as bad as having an IV in, but I don't relish the idea. Sean though I would get used to needles during this experience; I'm not sure I've progressed quite that far.

A couple of weeks ago, my friend Carli drove over from Olympia to take me to chemo. It was delightful to visit with her during the treatement. We had to wait longer than usual for the blood tests to clear me for chemo, which just gave us more time to chat. I can highly recommend having a friend you don't get to see often bring you to chemo.

Next: Surgery

I have an MRI and a meeting with my surgeon in Seattle scheduled for the end of the month. It is the day after my last chemo, which seems a bit strange to me, as that last infusion won't have had a chance to do it's job yet. At that meeting, or after it, we'll get my surgery scheduled. My notes from the conversation with the nurse navigator say that the surgery will be 4-6 weeks after chemo, though I don't remember that part of the conversation. My calculations, then, put the surgery in late May or the first half of June. The surgery will be an outpatient procedure in Seattle at Seattle Cancer Care Alliance (which is changing its name to Fred Hutch).

Last week I attended a Zoom meeting during chemo. This was the first time scheduling forced me to do this. It went ok, but it's a bit odd to have ones attention divided between what's happening the room and what's happening on the phone.

How I'm Feeling

I have been feeling pretty good over the last few weeks, much better than at the end of the A/C chemo. I've been noticing more of an upset stomach after chemo in the last few weeks and I finally did have to take some medicine for it, but it's still pretty mild compared to before. Going to bed early also seems to help.

My hair is growing back soft and white, but I'm really looking forward to the scar on my face (that's been there since at least January) finally healing. 

 

The other day I did a full grocery shopping trip in a store for the first time since December. I've been buying groceries via curbside pickup at Fred Meyer or letting my husband get the groceries, but they've been out of stuff or weird about bags and substitutions lately. I figured my blood work is good, COVID case counts are down, and if I went to the store early on a weekday, the store would be pretty empty. Well, apparently 9am on a Friday is prime grocery shopping time because the place was a lot busier than I anticipated, but I also felt like I was able to stay distant from folks pretty easily. The thing that surprised me was that I got winded putting the groceries on the belt to check out. 

Another view of this interminable sculpture

I've been walking every day and doing yoga and doing a modified workout on Mondays and Tuesdays when I'm feeling best, but I can tell I am still not where I was before the chemo, especially on Fridays and Saturdays when I tend to feel the nausea and fatigue. I'm hoping that my stamina will come back fairly quickly after chemo ends. I suppose I've got a month to get some of it back before surgery.

a heart shaped nearly port-a-cath bulb

I've also been noticing that my anxiety is cranked up a bit lately. I'm not teaching this quarter, which is a decision I made right about when I was feeling the worst. For the past month I've alternately felt like I could teach and like I'm glad I decided not to. Wednesdays would be tough because I have my chemo treatment, which takes a few hours, then I tend to feel groggy for a few hours (except for the day they gave me the anti-anxiety meds) and slightly nauseated or uncomfortable by the evening. Thursdays I tend to feel pretty great, but then Fridays and Saturdays (and lately Sundays) my tummy and my chest hurt and I feel uncomfortable and I get tired pretty easily.

a port-a-cath bulb with branching catheter tube

I try to schedule all of my tasks on Thurdays and Mondays and Tuesdays and give myself permission to rest, read, and nap on Wednesdays, Fridays, and Saturdays. I've noticed that if I make an effort to rest those days, I feel better by evening. I've also noticed that, even though food is less enjoyable lately with my reduced ability to distinguish flavor, I seem to do better if I eat certain foods with the aim of passing my weekly blood tests. 

my spinach smoothie look disgusting but taste fine

I've been drinking smoothies with spinach most days. The goal of the smoothie is to consume spinach, wheat germ, fruit, and water with the aim of staying hydrated and fighting anemia. I also have Dave's Killer bread (the kind with lots of seeds and nuts) every morning because that was recommended to help with the liver enzymes. Both of these measures have been generally better since I started adding these things to my diet. And as long as I can't distinguish flavor very well, it kinda doesn't matter what I make for breakfast. The good news is that fruit and vegetables so far have seemed to retain the most normal flavors.