Done with chemo!

We talked with both doctors, my regular doctor yesterday and a specialist from Seattle today, and they are in agreement; I’ve done enough chemo.

Their reasoning is similar. I was presumably cancer-free as soon as I had the surgery at the end of February; the chemo was just to reduce the chances of a reoccurrence. The first three months are the crucial months, it matters less after that. There’s only 1%-2% difference in long term outcome for 3 months vs 6 months treatment. I’m having a lot of problems with side effects and the risk of permanent damage from the chemo outweighs the slight increased risk of reoccurrence.

The only thing the specialist said that was different than our regular doctor, is the specialist wondered why the heck my cancer center didn’t have me test for COVID when we called to tell them I had a fever. She said, “Chemo doesn’t by itself cause a fever.” Something was causing the fever and she would have wanted to have figured out what it was. It’s true that the chemo was probably hindering my body’s attempt to deal with whatever was causing the fever – but that’s all the more reason to figure out what was causing the fever!

My cancer center did check for a urinary tract infection (which I didn’t have), and they did the standard bloodwork to checks for signs that I wasn’t handling the chemo well (for example, my white blood cell count was low but not hospitalization-level low). But other than screening for a UTI, they didn’t really look for infections and they didn’t have me test for COVID.

The other thing they didn’t do was take any precautions in case I had COVID. They routinely check everyone’s temperature on their way into the center, but since we had called and said I had a temperature, they put me on a special list to admit me with a temperature. Huh. And then they treated me the same as everyone else. Masks are required, 6-feet distancing requested but not enforced in any way, busy waiting room, etc.

I don’t have a temperature anymore so I’m not going to bother getting tested for COVID now. But in hindsight I should have done so two weeks ago. In hindsight it seems crazy not to have gotten tested. But we reported my fever immediately to my doctor and followed their instructions. I thought the chemo was causing the fever along with everything else. I’ve been quite sick and chemo has been the reason. The fever was just one of so many symptoms I’ve been dealing with since starting the chemo.

I know the rest of the world is understandably hyper-focused on COVID, but my life has been revolving around cancer. Cancer is the problem, cancer is the reason, cancer is the fight I’m fighting. For me, everything is colored not by COVID but by cancer and the effects of the chemo.

I’m just going to continue to lay low for awhile and hope to feel better soon. I already feel somewhat better. No more fever, no more headaches. I still have a messed up GI system, no appetite, no energy, tingly hands and feet. And chemo-brain.

My brain is chugging along slowly, the same as the rest of me. I feel stupid, listless, apathetic, timid, confused, anxious. I’ve lost my spark; I don’t tell funny stories anymore, I don’t crack jokes, I’m not creative or playful or proactive. I’m no longer trying to constantly improve everything around me. I just wander around trying to remember to do basic things like move the laundry from the washer to the dryer. Chemo brain is the hardest symptom of all of them for me, and I hope I improve soon.

One thing I have noticed, is that I don’t feel celebratory. Whoo-hoo, I’m cured of cancer, no more chemo! Right? Except not. I feel unsure and vaguely uneasy. I feel a little bit like I failed chemo. And I have more things yet to do – CAT scans and bloodwork every 3 months, and yearly colonoscopies.

There’s no real end point, like a graduation, or getting the job or buying the house. We’re just in the next phase – waiting. Waiting for the chemo side effects to slowly diminish, waiting to do the next set of screenings, waiting for it to not come back. I don’t feel done. I won’t really ever be done. After awhile the frequency of the screenings decrease. By roughly around 7 years from now my risk of cancer reoccurrence will be down to the same as everyone else’s risk of cancer. Is that when I celebrate?

Certainly I should be grateful, grateful that I have no known cancer at this time. But that’s been true since the last day of February and it’s been a hard several months since then.

I’m cautiously happy about the idea of things getting easier over the next few months. But I don’t know if I’ll ever be quite the same again. I’m sobered by the whole experience. I can’t say I ever really trusted the future and I certainly don’t anymore.

I should be grateful for being alive, but I don’t want to just be alive. I want to be lively. I want to be funny, flippant and clever. I want to be confident and benignly capricious. I want to be sexy and snarky. I don’t want to be the old woman peeking out her window at a big scary world. I want to be the teenager who thinks she’s going to save the world.

But first I’m going to go dump some crushed pineapple and spices into a vanilla cake mix and hope for a better outcome than the last time I tried to make cake. And maybe I’ll even eat some of it. Or not. Or maybe I’ll just continue to sit in my hammock under the pine trees and remind myself how lucky I actually am.

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