In my last post we talked about the psychological impact of treatment on survivorship. There are two words that inevitably drive the conversation. Those two words are late effects or residual side effects experienced by the individual that has received a diagnosis of a blood disorder or cancer. I am going to review the synopsis of my conversations with Joey after his bone marrow transplant. To add context, my role was to be the best listener possible and not influence the direction or tone at any time. These were among the few times that he was stoic. It translated into direct and pure discussions about what leukemia meant to him and his life. Sometimes the conversations were on the fly such as after a doctor’s appointment or in everyday interactions when he was experiencing a moment of pain, weakness, or confusion.
Yes, the side effects have an (s) at the end. That is because there is usually more than one of the human health systems affected by the treatment protocols that save lives. It is a given trade off that doesn’t get the serious consideration it deserves. However, subconsciously it does, although it does not rank higher than the alternative. The alternative is death and that is not a chosen option for anyone. As a care giver and the one to sign those consent treatment forms, we pray and hope for the best. We tell ourselves it won’t happen, and if it does we will fix it.
Joey made it clear that some of those fixes and work arounds that the doctors share or you figure out as you go along, are not true problem solvers. Instead, they are the next coping mechanism on the trip through the life that was fought to live. Joey was a true soldier because he never complained and I only saw him cry a few times. They were some of the darkest for him. This was when the coping didn’t kick in. For example, reality set in when his heart would start to beat wildly or he would be gripped by a sharp pain in his chest. After we would ride the incidents out, the conversations would start. How can we fix this? Is there a doctor somewhere that has the answer? The talks always start with questions. Finding the answers was not as easy, if they existed at all. We found tons of information on late effects but not much more than what to look for and what the end result could be.
“I just want to be normal… I just want to get a job without worrying about getting tired or not being able to lift something. Why am I so weak? Can I have a day without any pain? I miss my hair. I wish I could grow just a few more inches. I hate having to take my testosterone. Why is it so expensive?”
With each episode it never gets easier for a parent that had to make those treatment decisions. Because you are flooded with did I do the right things for my child during treatment? Then you look at your child and you know you did, because they are here. They live to inspire and offer hope that life is bigger than anything that comes along. We thank God for treatments and the doctors and nurses that administer them. Treatments are there to cure and for now they come with a price. That price is late effects.
The unfortunate late effects appear to be universal because some of the same chemotherapy agents are being used for a variety of diseases. My next post will talk about this more with a few of the most common residual side effects regardless of the diagnosis.
Many blessings!
-Marsha