Paul's Heart

Life As A Dad, And A Survivor

No Control

Great album, great singer, but has nothing to do with this post’s topic other than the title, “no control.” Continuing on with things related to my battle with Hodgkin’s Lymphoma in recognition of Lymphoma Recognition Month (known as Blood Cancer Month also), the issue of “control” was not something I had thought about, until after my treatments were done, but affected me the entire way through my battle.

From the moment you meet with an oncologist, and they begin to pursue a diagnosis of cancer, whether you realize it or not, you have begun to have control of your life taken away from you. You do not see it happening, because you are focused on getting through this, more importantly, surviving. Your intent is to do whatever it takes.

A soon-to-be diagnosed cancer patient quickly discovers doctor appointments to keep, scans and bloodwork to be done, and then of course a treatment schedule with routine lab work to follow, all on a tight time schedule to keep you on track for the best shot at remission. You have no control over this. I mean sure, you could refuse, but then, that would result in the obvious.

The time period for me from beginning to end was November of 1988 to March of 1990, seventeen months, two Winter seasons (that meant no skiing), one Summer season (no trips to the beach and water park), including a honeymoon as I got married during that time. A cancer patient soon learns, your treatment team does not work around the patient (even for a wedding), the patient works around the treatment team. There are also certain foods that have to be avoided. And then finally, your body itself, will dictate what you can do, when you can do it, for how long. The point is, you are no longer in control. As I said, being so wrapped up with what needed to be done, dealing with the current side effects of what was happening, I never really gave any thought about what I wanted, so control, or lack of control was the last thing on my mind.

My wedding, though still occurring on the date as planned, was still impacted by the timing of my treatment schedule. And as the second set of Winter months came around, as an avid skier, I missed the prior season because of all of the testing and staging I was going through, I had no intention of missing the next season. Here is how that went.

“So doc, I was looking to hit the slopes in a couple of weeks in between my cycles of treatment. If I feel up to it, do you think I could handle it?” I was twenty-three years old, asking another adult, not even a parent, if I could do something I had done for many years.

He answered, “well Paul, I guess you could. But I would think about it, because, well, you will obviously be dressed warmly because of the cold.” I said, “of course.” He continued, “you probably sweat a lot from all of the physical exertion.” I chuckled, “yeah.” Where was he going with this? I was just asking if my body could physically handle skiing. “What would happen if you would catch cold or something because of that, or catch something from other skiers? If that impacted your blood counts, then your treatment could be delayed, and you are near the end as it is. Do you really want to delay it any further?”

There it was. I had my “final” treatment date on my calendar from the date of my first injection. I was going to have many more years of skiing, but I wanted to get my treatments over and done with. The funny thing is, during the entire time, I never realized how much control cancer had over my life, until…

Two weeks after my final injection, when I would have been preparing for my next cycle, had there been one, I just sat there. I had nothing to do now. I was free to get back to life. And I felt confused. Because for so long, I had been following everyone else’s directions, meeting the orders of doctors. Imagine emerging from your home following a hurricane. You exit your home slowly, not knowing what to expect as far as damage and destruction. You see the bright sunshine, but you also see what has been left behind in the storm’s aftermath. I personally know this feeling as well having survived a direct hit by hurricane Irma five years ago. I would have follow up appointments to keep, and likely blood work and scans, but there was no longer a timetable to keep. I realized I was back in control.

I had not social media or internet back in 1988, or else I might just have learned others had been experiencing this same feeling of lack of control. I frequently see posts from patients asking about getting a tattoo during treatments, or dying hair, going on vacations, and of course, getting married and pregnancies. These patients now experience the same loss of control without realizing that is what is happening. Because as they post their “can I” situation, I am right there with the same advice my doctor gave me about skiing. “Sure, you could probably do it, but would it be worth it, if it resulted in delaying your treatments?” In the game of “highest card wins,” you only get one card. You live with the card you draw. Sometimes it is best not to draw any card. But that means you have to give up control. That is what cancer does.

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