What do chemo weekends feel like?

There are all kinds of misconceptions about what you feel like after a treatment. I can only speak for my specific treatment (ABVD) and the way that my body handles it, however, I do think there are some universals in chemotherapy. This is mostly for my new friend Michelle, a fellow young alumna, who is starting chemo (cytoxan – if anyone out there was on cytoxan and wouldn’t mind talking about specific side effects with someone, let me know!) for non-cancer related kidney disease.

Short term:

Fatigue and Weakness – For me, this is one of the biggest symptoms. When I say fatigue, I don’t just mean drowsy or sleeping more. While those are components of the fatigue, it’s not all of it. I find myself having less physical stamina. I live on a 3rd floor walk up which has never been fun, but has actually gotten so much as daunting at times. I also work on the 3rd floor and find myself shamefully out of breath some days.

The day after chemo, my energy level is wonky because I’m hyped up from the steroids but still feel run down. I plan on spending my Sunday in bed, often staring blankly at a wall trying to convince myself to get a drink of water or to eat something. Sleep wins more often than not.

By Monday, I’m functional again though it takes a few days to be back up to 100%. Granted, 100% is a moving target and seems to move down after each treatment, but as long as I have the energy to go about my daily routine with some adjustments, I can’t complain.

Weakness mostly is found in my hands and joints. One reason why a car became necessary is that it’s tough for me to not only stand up and hold onto the rails on the T (Boston’s metro system), but also my knees go weak and I’m terrified of falling. I have stripper swung around a pole because I lost my grip and balance on far too many occasions lately. About a week after every chemo session, my knees go completely weak and stairs get kind of interesting. My legs will feel like I’ve run a marathon before I even start to climb up the stairs and then they start to go shaky. It doesn’t happen all the time, but when it creeps up, it’s almost debilitating. I’m learning to take my time and gauge how much I can do.

Pain – I think a lot of people associate cancer with pain. While certain cancers and certain treatments cause quite a bit of pain, my specific treatment does not to the extent many people fear. In fact, I had cancer-related back pain for the past 2 or 3 years that would wake me up out of a dead sleep in tears.  Now my pain level is generally a constant feel of a flu ache. I can’t often pinpoint the pain but rather feel achy all over.

The worst pain I get is nerve pain in my jaw from the vinblastine. Unfortunately, nothing can be done about it from a medical standpoint. Fortunately, it hasn’t been too bad for the past cycle. My first cycle (and remember, dear readers, a cycle is 2 rounds of chemo so about a month) left me in such pain that I thought I needed a root canal on every tooth and even had to miss work because I couldn’t move my mouth. I’m pretty glad that bit of the party is over.

Nausea and Appetite – I find that people tend to cling to this side effect the most. If people in the office about one thing in specific, it’s always about my nausea. I’m impressed that they have the guts to ask- I don’t want to know that anyone else pukes ever. The mere thought makes me more nauseated than the chemo (and it turns out that thought is the root cause of the bulk of nausea – anticipatory nausea – that I do have)! The good news is that there are tons of medicines, both that I get in the IV and that I take a day before and a few days after, that keep me feeling good. I also make ginger tea and drink ginger ale (though now ginger ale gives me anticipatory nausea because I associate it with chemo) which helps settle my stomach.

As a follow up, the excellent anti-nausea drugs plus the steriods they give me to perk me up and help the drugs work better mean that I am VORACIOUS Friday and Saturday. Steroids mean that all that food I consume eating like I’ve never eaten before means that I’ve gained about 15 pounds since starting chemo. Ugh. My online support groups for lymphoma always say the people who can’t stand to lose any weight drop 10 pounds like nothing, but the people who might see losing weight as a desirable side effect tend to pack it on and have a hard time getting it off. Ah, the joys of medicine.

Hairloss – I’ve lost surprisingly little hair. Watch, I’ll wake up in the morning and be bald. And honestly, for some people, that’s exactly what happens. I’ve heard of women walking into the shower and 90% of their hair being gone when they leave. I cut my hair short so it would get caught less. And I am losing, but I have a few things going for me:

1. I have lots of hair. Lots. Not even just thick strands, but in the amount of hair sprouting from my head as well. It also means I have a lot more to lose.

2. I’m losing fairly evenly around my head. When I go in the shower and wash my hair (when the most falls out), I’m losing about the same amount from everywhere I wash, not focused on any one area.

3. Although I have a lot of chemo and fairly frequently, ABVD seems to often leave patients with at least some hair.
Fun fact: The most noticeable hair loss has been my nose hairs. Who would think?

I’m glad I was convinced not to completely shave it, though I do look like Sonic the Hedgehog most days because I have NO idea how to make it do normal things. While I’m not dealing with normal humidity frizz, instead the humidity makes my hair stand on end and all the little cowlicks pop up. At least messy is the edgy, trendy thing to do now.  😉

There are some other odds and ends of course. My skin and lips are dry, I have to brush my teeth a bazillion times a day, colds seem to linger longer, and my hands, feet, butt, and cheeks have peripheral neuropathy where the nerves go a bit haywire and tingle and go numb. So really, my spidey sense really DOES tingle!

All in all for me, thus far, it’s been do-able. The end result is worth fighting back gag reflexes when I see a cupcake (though not Elisa’s funfetti cupcakes: clearly there is a G-d) and stubbing my toe too often because my feet are numb. That’s not to minimize the serious potential side effects and I’m certainly not out of the woods yet as other Hodgkin’s warriors like Cheryl, currently in the ICU for over a month after sudden bleomycin-induced lung damage right before her last treatment, have shown me. It sucks calling your doctor every time you have a sore throat or a cough, just in case. Being anxious about everything sucks even more- but there’s no way to go but onwards and in a year, this will all be a distant memory.

Posted in Treatment
2 comments on “What do chemo weekends feel like?
  1. Caroline says:

    Chemo does suck but for the nausea, try the wrist bands for seasickness. A friend gave me them during chemo and they helped a lot. I had cytoxin with adriamycin – Adriamycin had a lot of bad side effects that masked the ones for cytoxin. I was told that wasn’t as bad. Go to http://www.chemocare.com for side effects of chemo. They have a lot of information.

  2. Thanks so much for writing all this out, Allie. It’s certainly not trivial, but seems handle-able in a way that I didn’t expect from chemo portrayal in TV and movies. Gives me the confidence that I CAN do this!

    And Caroline, I understand that it’s hard to distinguish the side effects of the different drugs. It’s not the same thing, but I’m on about eight different meds, and figuring out where any effect comes from can be tough. But I hadn’t seen the chemocare website — that was definitely helpful.

    I start on Monday, and then I’ll just take what comes as it comes, and figure out how to manage it. I’m pretty anxious to get started already — I feel like the anticipation is worse than what will actually happen.

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