Mixed feelings.

It’s been almost two months since my last chemo treatment. The time has flown, and it’s been an incredibly busy couple months — selling two houses, buying a new house, moving, running an event, hiring and onboarding someone new at work and becoming a supervisor for the first time, and trying to soak in as much of fall as I can in the outdoors. I’ve barely had time to celebrate finishing treatment or reflect on the past six months because I’ve been so focused on what I need to do in the moment to keep life moving forward. I started this blog post weeks ago, but have struggled to find the appropriate words to explain all my feelings — mainly, I think, because they are ever-changing.

October 19 – 7.5 weeks out from chemo. Eyebrows are getting fuller again, I’m feeling good on the bike, and enjoying the first snow!

Sometimes, I can’t believe that I had cancer. It’s like it was one of those vivid dreams where you wake up and aren’t sure what’s real. What just happened? Was that me? In some ways, I now feel very removed from all of it. I don’t have lingering physical side effects as reminders and I’m feeling pretty normal day-to-day. I don’t have any more nausea, queasiness, or taste issues — those resolved within a couple weeks of my final treatment. I’ve finally been able to return to an unrestricted diet, and I’ve been so excited to eat Greek yogurt, sauerkraut, kimchi, kombucha, and raw veggies. A few weeks ago I looked in the mirror and was amazed at the color in my face. I didn’t realize how pale I’d started looking, especially towards the end of treatment, until my cheeks became rosy again. I never lost all of my hair but it thinned out a lot, and it’s definitely growing back quickly and getting thicker. Soon I’ll be deep into the awkward grow-out phase (anyone have short hair styling tips?!?)

August 26 – riding to my last chemo treatment. 27 miles was a challenge.
October 2 – in the middle of 70 miles on the tandem and feeling good!

Of course I’m not as fit as I was pre-chemo, but I’m noticeably getting stronger on the bike. At the beginning of October I did my longest ride since early May (before starting chemo). Evan and I did 70 miles on the tandem and it felt a lot better than I expected. A week later, I rode my mountain bike for over 4 hours on technical trails with lots of climbing, and once again, I surprised myself with how good I felt. The power in my legs for quick bursts and punchy climbs is returning — this was something I completely lost during chemo. I felt like I could spin my way along for a few hours but as soon as I needed to put any real power down, I was done. It’s been a relief to feel that coming back. My capacity for doing back-to-back workouts and riding every day or even a couple times a day (I’ve been commuting to and from work — 14+ miles each way) is getting better and better too. About 4-5 weeks after my last treatment, I seemed to suddenly turn a corner with regards to fitness.

October 8 – Being able to do longer mountain bike rides again has me STOKED. Photo by Ben Swab.

I also started running again, which is something that ended up falling by the wayside during chemo for a couple reasons. One, I had limited energy to spend on exercise and I tend to gravitate towards bikes, and two, running hurt more. It felt like my joints and connective tissue ached a lot more that normal once I started chemo. Now I’m excited to add running back into the mix, especially as we come into winter, which is usually when I doing more running and hiking anyway.

October 16 – Fall colors on the water.

Physically, I feel like the pieces are falling back into place, but the mental pieces of recovery have been really challenging at times and much less linear. I wasn’t as ecstatic as I expected upon finishing up treatment. When I was going through chemo, I couldn’t wait until the end. I thought I’d just be so happy for it to be over that nothing else would matter, but those feelings haven’t come automatically. Don’t get me wrong, of course I am happy and very grateful that everything went so well, but I haven’t felt the overwhelming relief and pure joy that I anticipated.

September 15 – Enjoying quiet walks at our new house.

I think part of the reason it’s been tough to celebrate is that finishing treatment wasn’t a switch. I had my last chemo but then I had to wait several weeks until I could do anything differently. I still had to take precautions to protect my fragile immune system and lifting those has been an ongoing process. I’m still concerned about what would happen if I got sick with something like COVID. Would I have a worse outcome than if I didn’t have chemo? Is my immune system really back to “normal?” I didn’t have any post-treatment bloodwork, so I can only assume that my blood cell counts are back into normal ranges, but how else has chemo impacted my body that may effect how I’d respond to an illness? My oncologist said 3-4 weeks of precautions after my last treatment, and I’m well beyond that. I just need to trust him, because I can’t keep putting life on hold. I feel good physically, so I should take that as a sign that I’m doing well, but I’ve been feeling a lack of trust in my body.

Thinking I was super healthy and then finding out that I had cancer has messed with my head more than I realized. It freaks me out that something could be so wrong with me and I was continuing to function like normal. What else could be wrong with me? If I get cancer again, how long will it be before I know? Am I actually not healthy at all? But the flip side of that is I did catch it early. I knew myself enough to know that the swollen lymph node I felt wasn’t normal and that I should get it checked out. I think in time, as I continue to heal, the trust will come back, but it may take a while.

September 4 – Getting out in the race canoe.

I wouldn’t say that anxiety about recurrence has been front and center, but it’s certainly been on my mind. Treatment worked great and it’s over. I’m cancer-free. But what if it comes back? Statistically, there’s a 10-30% chance of relapse for all Hodgkin’s cases. The interim PET scan is the best prognostic indicator of outcome, and mine was totally clear of cancer, so that is a huge win in my favor. I also had an early stage when I got treated, so it is more than likely that I did my time and it won’t come back. I won’t have any scans or testing until December. Until then I am trying not to think about it too much, but I’m sure that as scan day approaches I’ll become a nervous wreck.

September 18 – Exploring some new roads from our new house with Evan’s parents.

There are a lot of things I’m still being thoughtful about to try to reduce my risk of recurrence. When I was going through treatment I wanted to do all I could to complement chemo with diet and lifestyle practices, and I learned a lot about factors that can contribute to cancer growth and overall health.

Some of the changes I’ve made are reducing my sugar intake and cutting out alcohol. I quit drinking when I received my diagnosis because I wanted to be as healthy as I could be going into treatment. Throughout chemo, I was looking forward to being able to have a beer again, but now I decided I want to give my body more time to recover. I imagine I’ll go back to having an occasional beer or glass of wine at some point, but for now I’m still abstaining, which is a decision I feel oddly conflicted about. I feel good about it, and don’t feel like it’s something I “have” to do but rather something I am choosing to do to maximize my recovery, but it also represents a part of me that is nervous about my health in a way I never felt I had to be before.

I don’t want to totally obsess over food and completely cut out everything I like that might not be the healthiest, but I’m trying to figure out a balance and how to eat really well most of the time and also not be so rigid that it takes enjoyment out of eating or social events. I want to feel empowered to optimize my health but not overly anxious about it, and that’s been a learning process.

October 8 – fall!

There’s been a lot of dissonance between expectations and reality with regards to how this experience has effected my psyche. When I was first diagnosed, I vowed to spend less of my life being worried about “what ifs.” Anything can happen at any time to all of us, no matter how careful and vigilant we are about doing the right things. At some point we have to let go and accept that we can’t control everything. Life lived in a bubble of too much comfort is not a life I want to be living. If caution is coming in the way of happiness, what’s the point? This was all easy to wax poetic about at the beginning of this journey, but I’m realizing that the emotions and challenges that come with being a “survivor” are complex. During my initial diagnosis and treatment, my mind went into protection mode and I was so focused on doing what I had to do to get through it. Now, I find a lot of thoughts bubbling up that I had shoved aside. Why me? What did I do wrong?

A really big and scary “what if” came true. Part of me feels empowered — I got through it and it wasn’t as bad as I expected. Here I am on the other side doing just fine, recovering faster than I thought I would and with no long-term negative physical effects. But another part is freaked out that it happened. Will I always jump to the worst-case scenario? Will this experience make my anxiety better or worse?

I have a choice here. I can’t control what happens but I can control what I choose to focus on and how I deal with these fears. I imagine all these feelings will also fade in time, especially if I stay in remission, and I will figure out how to work through them. While part of me feels like this experience never even happened, the other part is very clearly scarred from it. Navigating life post-cancer is more complicated than I thought it would be and it’s not as simple as being happy that it’s over. But I also gained some valuable perspective and I think overall I’m happier than before I was diagnosed because of it. I definitely sweat the small stuff less. I feel more confident. I have a lot more appreciation every time I ride my bike and I don’t take feeling good for granted.

October 8 – A 4+ hour mountain bike ride with a ton of rocks and climbing left me much less exhausted than I anticipated, and that was really exciting! Photo by Ben Swab.
September 25 – exploring our new property.
October 2 – Riding to Bellefonte from our new house and back with friends.
September 29 – Riding home from work. Going back to the office full time has been a big adjustment, but I’m really excited to be able to bike commute now.
October 8 – colors are starting to change in Coopers Gap.
October 8 – Dutch Alvin Trail in the fall has the best colors.
September 10 – First MTB ride in a while, first ride with Evan and I on solo bikes in a while. I was still feeling pretty whooped.
September 24 – Exploring our new backyard with friends.

7 Replies to “Mixed feelings.”

    1. I’m glad that, at least physically, you are feeling close to normal and have most of your strength back.

      It’s humbling to read something like this; thank you for shining some light into the complicated road you’re on right now. It’s no small thing.

      I think I would subscribe to your notion that eventually, with enough time, these insecurities will fade away. And I say that as a pessimist. This is a big defining moment for you right now, that casts a long shadow–because it’s so recent. Over time, with you doing and experiencing more things; accomplishing more things; creating more and more awesome and vivid memories–this will inevitably be a much smaller percentage of how you see yourself and your circumstances. You won’t view your life through the lens of being a cancer survivor.

      I dig the pics. The colors have been really good this year.

      Time to head back out!

      Like

      1. Helena
        I’m so relieved you cancer free. That was a hard scary life changing time and you handled it so well. You are such an inspiration! Thank you for sharing your journey. Your so strong and amazing! ❤️

        Like

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