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Life After Cancer - Now What?

December 6th, 2017 |

by SueAndryk | Survivor: Acute Promyelocytic Leukemia    Connect

When I finished chemo there were bubbles and balloons celebrating the day I had counted down to for nine months.Hurray! I made it! I’m a cancer survivor! Hugs, high fives and fist bumps all around. But after the bubbles burst and balloons deflated all I could think was — now what?

I had spent the past nine months in survival mode enduring a month in the hospital and 112 arsenic infusions in total.

My life revolved around going to chemo, dealing with side effects and mustering up enough energy to do something fun on my chemo breaks before going back to the Monday – Friday grind of going to the cancer center to have my daily bag of arsenic pumped directly into my heart.

Chemo felt like a job at times but instead of getting paid in money I got paid in life. And when it was time to move on from my job to survive cancer to my new life after cancer it all felt somewhat bittersweet. It was hard saying goodbye to all the amazing people who saved my life and helped me cope by making me laugh every day. And while I was ready to be done with chemo and for my new life after cancer, I didn’' have the energy to do much more than rest and heal. I was exhausted, in pain and feeling so far away from anything resembling my pre-cancer self.

At 40 years old I felt like I was fast forwarded to being 70 years old dealing with issues such as chronic pain, managing my energy and coping with my friends dying on a regular basis. My hands and feet were numb from chemo-induced nerve damage and when the feeling started returning I fell repeatedly while losing balance adjusting to my constantly changing “new normal”. And just when I thought it was over there was always a constant barrage of extra things to deal with like the nightmarish withdrawal going off pain meds, a never ending mountain of medical bills, the crippling fatigue that made going back to work full-time more exhausting than imagined, getting sick constantly with a weakened immune system and people not understanding why you can’t just get over it and get on with your life as it had been. But there is no going back to your old life and being who you were before cancer. Your old life is gone. It doesn't fit anymore.

Not that I didn’t try to go back to my old life, I did. Repeatedly.

I tried to do all the things I used to do in my pre-cancer life as a digital nomad who could work from anywhere. All through chemo I said I was going to finish walking the pilgrimage route known as the Camino across Spain. Several months before being diagnosed with leukemia I had walked about half way but ended up in the hospital for a week on IV antibiotics with an infection in my leg so still had about 300 miles to go. Less than five months after finishing chemo I packed up my backpack and boarded a plane to Spain.

While finishing walking the Camino was one of the best things I’ve ever done — cleared my head of a massive amount of cancer psychological baggage, met interesting people, gave me my confidence back and was empowering to finish — it also made me realize that I’m not the same as I was pre-cancer. My body didn't recover as fast, I was constantly in a daze of fatigue, I had to stop for 2 weeks with an infection that wouldn't clear up and I had to deal with yet another one of my cancer friends dying while being alone on the road. And then after all that it was time to hunker down in a temporary apartment in an unfamiliar city and get some work done coding iPhone apps with my chemo brain and exhausted body before heading off to the next adventure. Forget about it, I just didn't have the energy to live that life anymore.

So I headed back home to finish healing and figure out a life that better fits where I’m at in this stage of life after cancer.

As the months have passed cancer has taken up less of my identity but at the same time my pre-cancer self as a digital nomad has continued to fade. My life is in flux. I feel neither sick nor well, caught in the seemingly endless phase of better but not well. I’m not sure if I’ll ever leave the land of better but not well. Maybe eventually it will become my "new normal" and I’ll accept better as my new definition of well. Being sick with cancer was easier to accept in some ways as there was a chemo end date to look forward to — I’ll be declared cancer free and showered in bubbles! There is no such end date for healing. My hands and feet might be numb for the rest of my life or they might not. And the same can be said of all my lingering chemo related issues.

Regardless, I'm grateful to be alive and able to have a second chance at life even if it looks vastly different than the future I was building toward when I was diagnosed. At times I miss my old life. Life was easier back then. More carefree. But as I move forward after cancer and come to a greater acceptance that I can't go back to the old me, the more new pathways open up that I would have never considered in my life before cancer. There were no bubbles or balloons to mark reaching the fork in the road of acceptance of a new life but I’m happy to finally be here taking bold new steps forward and spending less energy looking back at what might have been. The future is wide open.

This post originally appeared on Sue's Blog,

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SueAndryk's picture
I’m an indie iPhone app developer, chemist, entrepreneur, world traveler, outdoor enthusiast and tinkerer. I had leukemia (APL) in 2015 so write about that topic quite a bit to help all those going through a tough time feel a little less alone.