It’s been a month since my last post. I’ve been busy, and the last thing I’ve wanted to do is spend extra time at the computer when I’ve been typically working from 9 am to 9 pm.
It’s been busy in a mostly good way, though I feel the hypocrisy when I edit things on the importance of downtime and relaxation or making time for yourself. Like everyone else this summer, I shared and cited “The Busy Trap” column that ran in The New York Times, agreeing with its wisdom while still feeling guilty when I’m not doing something.
Busy in a good way means having work and starting on a new project. My boyfriend urges me to take it easy, but I’m nervous about the upcoming transplant. I don’t know how long I’ll be sidelined, and I feel as if I should take on as much work as I can now, to save up for later. Sometimes I feel like I can go only to extremes, all-or-nothing. All work, no play; all play, no work.
I’m also back to working out. As I did before I got sick, I try to work out every day and invariably fail, so I end up working out four or five times per week. Since I still am not allowed to wallow in the bodily fluids of others and must avoid germs, I generally stick to a kickboxing class or abs class once a week and 20-minute workouts at home. It’s been a challenge getting back to working out after a sporadic spring and summer and almost a year of not doing certain exercises. (After a year of not doing burpees, I felt as if 10 would kill me.) It’s strange to remember being able to do something and then just not be able to anymore.
I bought a jump rope and jumped outside on Sunday, during the unseasonably warm weather. Mostly I stood around wheezing and whimpering.
I’m grateful to have the energy to work out, though there are still some days after chemo where I’m wiped out.
Today, for instance. I’m beat. I blame the 8 am appointment and not being allowed to have coffee. I’m supposed to stay hydrated to plump up my veins for chemo, so the day before, I drink plenty of water and I don’t drink coffee. I was going to have coffee anyway this morning and pretend I forgot, but my boyfriend, the caffeine police, reminded me as it was brewing. Thwarted.
So I was a zombie today, struggling to stay away through my appointment, enviously eying the waiting room coffee during the hour or two I waited before treatment.
I feel much better than last week, when the anticipated Brentuximab vedotin rash appeared. As part of the clinical trial, I’m among the first to experience the rash that appears on your hands and elbows, and sometimes the hips. The drug is usually given to people after stem cell transplants, if the lymphoma returns. In this trial, they are seeing how it works to eradicate cancer activity before transplants. Last week, I learned the rash doesn’t show up in post-transplant patients, but it is appearing in a lot of the people in this trial. They think it might be something to do with the immune system.
I feel sorry for my faithful immune system. Even when it was barraged by chemo and not as strong, I still rarely got sick. I got a strange one-day cold in the fall and a brief cold in the summer. Now it’s trying to alert me that I’m being poisoned. Thanks, good buddy. I know.
This does worry me that my immune function will somehow be changed after the autologous stem cell transplant. From what little I know, it sounds like they break you down and rebuild you, like a superhero. They don’t put you in quarantine for two weeks just for fun. My poor super-immune system doesn’t know what’s in store for us.
Several weeks ago, I had a rash everywhere. I think I’m the first for this symptom, which sent me to Sloan-Kettering Urgent Care, a precautionary measure.
Last week’s rash though, snuck up on me. By the evening, when I planned to work out, my knees and elbows felt stiff. I felt old. Not the same type of old as when my friends post photos of their kids on Facebook or when I tell people about my first job after college, where we had only one computer with the Internet. This stiffness was like suddenly being 80 years old. (Or so I imagine.)
My skin felt tired. It’s hard to describe. When the largest organ of the body steps in, I decide to take it easy. Instead of working out, I sipped tea and watched TV.
The next day, as I surveyed my swollen joints and a hand that looked bubbly from the reaction, I started on my methylprednisolone.
I’m not a huge fan of taking medications. I barely take aspirin. I don’t understand the appeal of recreational drugs. I’m a goodie-goodie. Years ago, when I worked at the company with one Internet computer, someone told me that he made T-shirts with pot references, and I said, “Oh, like 4:30?”
He replied, “Yes…but it’s 4:20.”
Drugs seem to lower productivity. Who has time to sit and stare at a wall and see if faces appear? The whole thing sounds like a waste of time. It was like skipping classes in high school. You just have to make that work up later, and it’s not like anything else very exciting is going on at 11 am on a Tuesday in the suburbs when you should be in class. I’m a nerd to the core.
Steroids, however, are different. I was on Prednisone to reduce swelling when I felt my worst in March, and I loved it. I had more energy and woke up at 6 am without fail. I went from feeling terrible, probably the worst I’ve felt throughout this whole experience, to feeling superhuman. Then I saw the appeal. I was like Alex P. Keaton in that very special episode of Family Ties, when he gets hooked on amphetamines. I was on Prednisone for a week or two, but I look upon that time fondly.
This past Saturday and Sunday, I had extra energy and got some work done. I would have built a guest bedroom before my mom’s arrival, or a roof deck for our New Year’s Eve party, but my dosage was lowered before I had time.
Yet I don’t think I’m in danger of following Alex P. Keaton. Or becoming involved in a high-profile scandal, since I don’t cycle or play baseball.
After a few days, the swelling went down and the rash cleared. I’m waiting to see if I need to take them once again, still reluctant to take anything.
Right now, I’ve been having random pains in places where nothing is located. My shoulder. A place near my rib in my upper chest. But aside from the random chemo pains and the highly treatable rash, things are good.
So it’s been a good type of busy. There’s also been the holiday stuff—parties and entertaining. My mom was in town, so I had three days of forced relaxation, which I needed. There have been holiday parties. There’s even been karaoke.
Of course, there are even better ways to be busy, like planning a tropical getaway and drawing up mansion plans. I bought Powerball tickets and did not win. (This could be a lie, because if I did win, I wouldn’t tell anyone. Someone who worked on a reality show about lotto winners told me they’re never happy unless they remain anonymous. I guess people bug them for money. My solution, as I told my boyfriend, would be to hire beefy goons to “take care of” these nuisances, and he just said that I worry him sometimes. But anyway, you’ll just have to take my word for it. If I’d won, I probably would have bought some new boots by now.)
So I could be busy counting my millions and that would probably be better. (Although there’s the added stress of hiring the goons.) But for now, this is fine. I can busy myself coming up with a list of superhero powers I’d like to receive with my stem cell transplant. With my recent swollen Hulk hands, I think I’m going to see if I can get some Hulk powers.