Almost “normal.”

My first chemo session (which, for lack of a better word, is what I’ll call the 2 weeks following each treatment) has been a breeze physically compared to what I expected. The day of treatment I started to feel a little weird a couple hours after my infusion ended. My stomach started to hurt and my brain felt “spacy.” The next morning I felt pretty bad — dizzy and nauseous — but by the afternoon I was feeling a lot better and even got out for a bike ride with Evan on our new tandem. On Sunday, I rode again. Monday brought more sleepiness but slightly less nausea, and by Tuesday, I felt mostly normal.

But though I was feeling good physically, that first week of chemo was rough mentally. I spent a lot of time letting worry consume me. The Internet became a rabbit hole of horror stories and scary side effects. I spent hours trying to sift through information, desperate to do all I can to complement the chemo’s efficacy yet mitigate the side effects. There is a laundry list of things I now need to be hyper-aware of. I can now sunburn way more easily, so that means sunscreen even on cloudy days and buying sun shirts and planning activities so that I am not out midday.

My immune system is significantly compromised due to chemo so that means going into hardcore COVID (and any other illness) protection mode — wearing an N95 mask anywhere inside, avoiding gatherings, keeping my distance from people. It also means being extra cautious about not getting infected wounds, or tick bites, or food-borne illnesses. There’s a list of foods I’m not supposed to eat. If I get a cut, I need to make sure it is cleaned and disinfected immediately. Basically, if anything happens to me, my body’s natural defenses have a much lessened ability to cope. I cannot even explain how much this freaks me out.

Because I have been feeling mostly normal physically, the hardest part about these first two weeks has been remembering all the precautions I have to take and trying to decide what I should or shouldn’t do, especially socially as COVID is still on the rise again. I’m caught between wanting to still do as much as I can through all this and not let it stop me from living my life, and doing what I can to minimize any complications. I don’t want to live in a bubble, but I also don’t want to cause problems for my health that could have been prevented. These precautions are temporary, after all. Someday I hopefully will be able to gather with people again without worry, and eat sushi, and dine indoors and drink a beer.

But even after chemo is over, things won’t just go back to normal immediately. I have no idea how I’ll end up responding but I know I can expect for the side effects to get worse after each treatment. I’ve gotten lucky thus far, but it’s early. It may take months to feel “normal” again once this is all over, and even then, there are potential side effects that can linger even longer. Some, called “late effects,” might actually not show up until years later, like heart and lung damage. And then there’s the chance that all this won’t work and I’ll have to have a more aggressive treatment. Or that it’ll come back and I’ll have to go through this again.

I start to think about all these things and my chest tightens and my breathing gets heavy. Are my lungs weakened already? I try to breathe deeply and it hurts. It’s allergy season. This always happens during allergy season. I feel more out of breath than I usually do as I’m climbing a hill on my bike. Is it a lung issue or is it just that I’m a little weaker and more tired from the chemo, so the effort seems harder?

I know that I cannot live like this, thinking only of the what ifs. I used to be a lot better at living in the moment but getting older has meant worsening anxiety. I know that I cannot continue being jealous of the people who can walk around and not have to worry about all these things, who can go out with friends and plan long bike rides and summer vacations. I know that I need to narrow my focus, be thankful for what I have today, not let myself become overwhelmed with all the worst-case scenarios and pine for the things I cannot do. But though I know what I need to do, putting it into practice can be really hard.

Last weekend, Evan and I took our new DaVinci Symbiosis XC tandem out for its first longer ride — 42 miles in the sticky heat. I felt tired by the end but not bad, especially considering it was 91 degrees when we finished. There’s something about being out for 4+ hours that is different, something that I don’t get with 1-2 hour rides. It felt good to feel that again. Though my legs felt heavy on Sunday morning when we woke up, I went out for another couple hours solo and felt pretty good once I got warmed up. It was a solid weekend, one that felt almost like any other. For a little while, I could forget that I have cancer. All things considered, I know I’m lucky to have that.

This week has been better than last. I’ve gotten out on my bike every day for the past 8 days. I rode over 100 miles and 10k feet of climbing last week. I feel slow, I don’t have a lot of power, and I can’t push too hard, but it feels good. I can still do a 20 mile ride like it’s no big deal, and I’ll take that as long as it lasts. I’m still waking up early and getting out in the morning before work most days, and keeping to a regular schedule like that gives me a sense of normalcy. Getting out for exercise in the morning first thing has helped immensely with the anxiety too. The brain fog that plagued me for the first few days after chemo is gone, and I can concentrate on work again. On my ride this morning, I actually felt just as good as or even better than I did before starting chemo — just in time for my next session tomorrow.

My 32nd birthday is this weekend and I certainly did not expect to spend it recovering from a round of chemo, but I’ll make the best of it. Hopefully this time around is almost as good as these past two weeks. Being active made me feel better even on the few days I wasn’t feeling great, and I’m good at that, so I’ll just keep doing what I do.

9 Replies to “Almost “normal.””

  1. Hi Helena. I am so sorry you are going through this. But someone as fit as you will do better than most. Cycling is great therapy no matter how long or how fast. Good that you are keeping active and striving for normalcy. My wife has a melanoma that she is getting removed from her back and she is getting the associated lymph node tested. The docs think they caught it early but melanoma is nothing to mess with. We are believers so we know that the Good Lord is in charge of all of this. A friend says that when you have anxiety- just say the words “ The Lord is my Shepherd” while you breathe in. Then say “ I shall not want.” Breathing out. Amazing how that little exercise helps your anxiety whenever the doubts and angst show up in your mind. Read the 23rd Psalm and it will surely comfort you.

    Prayers for you and also my wonderful wife.

    Patrick J McCloskey
    ARMADA
    Client Solutions Group
    645 Alpha Drive
    Pittsburgh,Pa 15238
    412 406 5700 (P) | 412 736-4993 (M)
    pmccloskey@armada.net

    [cid:image001.png@01D87104.C7327410]

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    1. Your diagnosis does not define you! Keep living ….. live…laugh …and love hard as clique as that might sound…. And as you said, don’t let the rabbit hole and what ifs consume you!! Love seeing and reading this !

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  2. Helena…..I have you to in my prayers, for healing; for Evan and you to have an ever closer relationship as you go through this; for you to feel the peace that only He can give you. Love your writing and hope you will continue to keep us up to speed.

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  3. Helena, one tip that was helpful for my coworker who had breast cancer was to hydrate, hydrate, hydrate. She nearly gave up chemo after the first session until she was told to keep hydrated.
    I love reading your blogs-you are so very talented. Keep on biking and keeping that positive attitude. You’re an inspiration to me.

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    1. My doctor and nurses have definitely emphasized the importance of hydration and I have been making sure to stay on top of it!

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  4. This is a challenge. You need to approach this like the longest bike ride you will ever have. You can do it.

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  5. You have the inner wisdom, the strength and will of a serious endurance athlete, the love and support of your community. You’ve this and we’ve got you. Big hugs, my friend. All my love.

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