The Long Term Side-Effects of Surviving Cancer

It took me a long time to understand that there were permanent side-effects of surviving cancer and enduring chemotherapy. It took me an even longer period of time to accept that fact. 

In the first few months after my chemotherapy ended, my body was an absolute mess, but I was clinging to the belief that I just needed a bit of time. I thought time would erase the trauma of my past, the physical damage done to my body, and my pain. 

When you break your leg or arm, it takes a frustratingly long time to heal, but then the bone is entirely mended and you are free to live as if you never broke it in the first place.

I initially thought that my body just needed to mend as a broken bone would. But that is not how chemotherapy works. There is a reason that cancer doctors hand you a list of “long-term” side effects of chemo when you finish your treatment. 

I fought hard for so long to be ok— to be healthy. My cancer had tried to kill me, but I survived. I won the ultimate battle, and I hoped that meant my suffering was finally coming to an end.  I believed the only permanent product of my cancer would be scars from various surgeries. I entertained the idea that those scars would be a solitary, solemn reminder of a horrible battle fought— a reminder I could cover up with the right clothes or even makeup when I wanted to forget.

How wrong I was.

So, not only was I left to deal with immense trauma after chemotherapy, the chemo freaking damaged my brain and left me to find ways to manage anxiety caused by that damage. I do really well at handling my anxiety now (as I have been dealing with it for years) but when traumatic things happen, it’s like my brain just freaks out and can’t calm down to save its life (more on this to come in future posts).

But oh, there’s more.

While certain parts of my body have healed from chemotherapy, others have not. My kidneys and liver have damage and calcification, my thyroid and adrenals struggle to operate and regulate everything properly. My intestinal tract is a mess because I was on antibiotics for two-and-a-half years (this kills all the good bacteria in your gut). I have intestinal scar tissue from adhesions, blockages, and surgeries. I have severely decreased fertility (if I am even fertile at all), my hands, feet, and lower back have nerve damage from vincristine, and I am at high risk for heart and joint problems, learning disabilities, and secondary cancers for the rest of my life.

This is all when I am NOT dealing with any unexpected “bumps” in the road. 

Yes, this is a lot of overwhelming medical jargon.

Believe me, this is the abridged, simplified version and it is about three-hundred times more overwhelming than it sounds.  

I have learned to live with all of this and manage the “abnormalities” of my body. My life follows a necessary routine. 

I have to take a god-awful amount of supplements to keep my body from falling apart and to help prevent myself from getting leukemia again. 

I see a god-awful amount of medical professionals who are overwhelmed and clueless the majority of the time because I don’t fit into their pre-determined boxes.

I have spent so much time in doctor’s offices and hospitals over the last few years that I am just waiting for them to make me pay rent. 

I still have a lot of days where I have next-to-no energy or suffer from head and body aches.

Being at high risk for joint problems led to the development of injury in my knee that should have healed a year ago. I haven’t been able to run or do anything similar since.

Despite these things, it wasn’t until April 2019 that I really realized that the long-term effects of chemo could keep me from living my life, or even take my life before I had a chance to really live. During this time, I had my second life-threatening abdominal surgery (the first one occurred during my chemo treatment). I am still struggling to fully recover from that.

At that point, I realized I couldn’t kid myself anymore.

There were so many things that were glaring me in the face. I couldn’t run away from them anymore (curse my knee injury).  I had to accept that there were things that I couldn’t change about my health. I had to accept what implications it held for my present and potentially my future.

This is the point I also realized that I had to adapt my lifestyle and daily activities to accommodate my health. This meant doing things I didn’t want to do and refraining from activities I did want to do.

I lost a large degree of control that I really didn’t want to lose.

With my health on the line, I didn’t have a choice.

I still don’t have a choice.

I am confronted with the realization that I have to accept the permanent effects of my chemotherapy, which is the last thing I ever wanted to do. Suffering for so many years left me with one desire: to be happy, at peace, and not inhibited by my health. I felt like I deserved that.

But even if I did deserve to have my life turn around and catch a break, life does not always work like that.

In my case, I think it likes to intentionally work in the opposite way.

But the future still scares me to death sometimes. There are nights when I have nightmares about getting cancer back or dying from some other medical horror, and I wake up crying. Then I can’t stop the tears because that nightmare could become my reality.

When any kind of medical complication arises, I lose my mind I because I feel like I can’t handle even one more medical procedure or hospital stay. I feel like a traumatized animal who can’t handle any more physical or mental abuse.

I just need a break that I haven’t been able to catch since I got diagnosed with leukemia eight years ago.

There are times when I am so frustrated that I have to watch everyone else around me just living their happy, healthy lives, that I just scream and cry and want to give up.

While I figure out how to come to terms with my body and its limitations (and these peace negotiations may take a WHILE), I do still have the ability to give my body the best shot possible. I still have that kind of control.

So, I am determined to take care of myself in every way I can. This means not only doing what is best to keep my body healthy; it means living life and enjoying everything that I am able to do. I go on every adventure I can, try to see the good in everything, and laugh as much as possible.

And the future is uncertain. While I feel like I am 80-years old mentally, my body is supposedly young and resilient. My blood looks good and my heart and other important organs are strong. Some of my other health problems could improve as well.

I don’t stop searching for answers and trying to solve the enigma that is my body. I’m in the process of doing everything I can to manage the physical complications my body presents and prevent future problems that could put me in the hospital. I do live in an age where there is an endless number of medical care options.

Some days are just a lot harder than others.

But, as long as the apocalypse doesn’t happen, and I can still take all of my god-forsaken pills and have an emergency room to go to (if need be), then who knows what the future may hold?

In the meantime, as I deal with some of these permanent chemotherapy side-effects,  I will remain as optimistic as possible.

Fingers crossed.