Cane Arrives Tomorrow
One of the stranger things about going through cancer treatment is that I seem to be doing some of it backwards. A lot of people lose weight while they are being treated. I have somehow managed to gain about forty pounds.
I wish I could say that was because I had rediscovered some great love of cooking and had been eating particularly well, but the reality is much less interesting. Most of my meals lately have consisted almost entirely of Boost meal replacement shakes with added protein. Solid food is still a hurdle for me. Some days I can manage a little; other days I cannot, but I have been able to keep the shakes down, and right now that matters more than having anything resembling a normal diet.
The downside is that those shakes have a fair number of calories in them, and apparently my body has decided to hang onto every one of them. Between that, being sick, spending far too much time lying down, and generally not moving around nearly as much as I used to, I have put on about forty pounds.
Walking has become more difficult too. I am weaker than I was, I tire more easily, and I have reached the point where pretending I do not need a little help getting around is becoming ridiculous. So I finally broke down and ordered myself a cane.
There is nothing fancy about it. It is not some beautiful carved wooden walking stick or anything that is going to make me look particularly distinguished. It is just a plain cane. I wanted something sturdy enough that I could actually lean on it while I walk and trust that it is going to hold me up.
It arrives tomorrow, and when it does, I am going to try to start walking around the block at least once a day.
That probably does not sound like much of an accomplishment, but right now I am not particularly interested in setting heroic fitness goals. Around the block is enough. If I can get outside, walk around the block, come home, and do it again the next day, that will be progress. If I eventually get stronger and can go farther, great. For now, I would rather set a goal I might actually achieve than create some grand plan that leaves me feeling like a failure three days later.
There is another fairly major change coming very soon. On September 23, I start my new treatment.
For a while, I had decided I was not even going to bother learning how to pronounce the name of the drug because I was getting sick and tired of looking it up every single time I wanted to mention it. Then curiosity got the better of me again, so I looked it up.
Mogamulizumab.
Yeah. That.
There is actually a pronunciation guide for it, and I have tried using it. It has not helped much. Somewhere between reading the word and trying to get my mouth to cooperate, everything falls apart. I get tongue-tied halfway through it and eventually just give up.
So I call it my infusions.
The doctors, nurses, pharmacists, and people who spend their lives around pharmaceutical names can worry about pronouncing mogamulizumab correctly. I will show up, sit in the chair, let them hook me up to the IV, and call it an infusion.
It is an immunotherapy rather than traditional chemotherapy, which is an important distinction. That does not mean it comes without side effects. The list is long enough that reading through it feels a little like browsing a catalogue of unpleasant things that could happen to the human body. I do not know which of those side effects I will actually experience, if any, and I am trying not to convince myself that every possibility on the page is automatically going to happen to me.
I am hoping this treatment will be easier on me than some of the medications I have already been through, although I have learned not to make predictions about how my body will react to anything.
Methotrexate was a good example of that.
I was on and off methotrexate for roughly two years, and it absolutely flattened me. I have never had a particularly strong stomach to begin with, and once I started taking it, the nausea became a constant problem. There were stretches when I felt almost completely useless. I would take the medication, get sick, recover enough to function for a while, and then repeat the whole process again.
When I look back at the last two years, that cycle accounts for an uncomfortable amount of them. There are things I wanted to do that I did not do, places I wanted to go that I did not go, and days when simply getting through the day was about as ambitious as I could manage.
That experience is also why I am trying to be careful about what I promise with this website.
I want to blog my way through this next treatment. I want to write about the infusions, what happens afterward, how I feel, what gets better, what gets worse, and all the strange little things that come with cancer treatment but never seem important enough to make it into the medical pamphlets.
I think there is value in recording this while I am actually living through it instead of trying to reconstruct everything months or years later. Memory has a strange way of sanding the edges off things. What feels enormous while you are experiencing it can become a vague paragraph in your head later.
At the same time, I know myself.
I have a habit of starting projects like this with great intentions. I get on a roll, write several things, convince myself that I am finally going to stick with it, and then life interrupts. In this case, life interrupting usually means I get sick and spend a few days in bed.
Then something stupid happens in my head. Instead of thinking, "I have cancer, and I was sick for a few days," I start thinking that I have fallen behind. I feel like I have failed at the project. I feel like I have somehow let people down, even when nobody was demanding anything from me in the first place.
And then I quit.
I am going to try very hard not to do that here.
This is a cancer blog. If there is any place on Earth where disappearing for a few days because I am sick should be considered perfectly reasonable, it is probably here. I do not owe anyone a publishing schedule. I do not have to produce three posts a week. I do not have to apologize if there is silence because I am lying in bed feeling awful.
If I disappear for a few days, I disappear for a few days.
Then, when I feel well enough, I come back and keep writing.
That is the plan, anyway.
For now, the cane arrives tomorrow. I am going to try walking around the block. On September 23, I start the new infusions with the ridiculous name. After that, I genuinely have no idea what happens.
And I suppose that is exactly what this website is for.
tags: Mobility, Daily Life