The following is a continuation of my series on my 30th anniversary of remission from Hodgkin’s Lymphoma.
Considering the major detour in our plans for getting married, my battle with Hodgkin’s Lymphoma, everything went as it needed to go. The plans for the wedding. Thirty radiation treatments. And the all clear from the oncologist. I was given a follow up appointment for when we got back from our honeymoon. I got married (my first time), and we had a fun time on our honeymoon.
A common fear that nearly all of us survivors have once completed with our treatments, is the fear of recurrence, or relapse. In other words, “it came back.” The hint of a symptom we had during our diagnosis can send us off of a cliff of uncontrollable worry. We barely get to celebrate our remission before that twisted concern already attacks us emotionally. For me, and I do not know why, I did not have this feeling. I felt the follow up was just a pain in the ass, taking up my time.
I had gone through a CT scan before, so this was not going to be a big deal. And I had no reason to expect any news differently than my last appointment. Except for some sunburn on my trip, I had no issues with my body as far as any symptoms or changes.
But the phone call I got a week later with the results sent a feeling of paranoia through me like I had never felt before. “Mr. Edelman, we have the results of your CT scan. Dr. M would like to discuss those results with you.” Yep, if it was nothing, I would have been told so right at that moment. I was not going to be made to come in just to be told “all is good.”
Dr. M: Paul, the CT scan picked up new disease below your abdomen.
(It needs to be noted that with my original diagnosis, any evidence of Hodgkin’s had been limited above my abdomen)
Dr. M: I cannot determine if this is actually a new onset, or if your Hodgkin’s has recurred, because of how soon, but we are considering this a recurrence.
I had relapsed. FUCK CANCER!
I have been counseling cancer patients for nearly three decades and one thing that I always tell my patients is that you either need to have an extra set of ears at the appointments (we did not have phones to record conversations back then). There is no doubt that I missed some very important discussion after Dr. M had told me about the relapse because my mind had taken me in a totally different direction. It would have been normal for me to once again revisit the “denial”stage, but I did not.
Self: It was your choice. This is your fault.
Of course, these two sentences are totally irrational, but at the time, it was appropriate, and earned.
Under normal circumstances, oncologists will treat with chemotherapy and likely followed up with radiation. Historically, Hodgkin’s had been treated with radiation alone, and with success. But vanity played a role, as I was going to get married in less than four months from my diagnosis and staging. Radiation would show the least amount of effect and I would be done before my wedding, and well, I would be in the middle of my chemotherapy at the time of my wedding, delays were not possible in the treatments.
Now I would begin my second guessing. While I would never know if I would have relapsed with just chemo, at that time, I would have still be going through chemo. But clearly, the decision was mine, and it was made. It was my fault.
Who knows how much conversation I had missed at that point, my mind wandering. But when Dr. M finally regained my attention, I heard the words that I had feared all along.
Dr. M: We want you to start on chemotherapy as soon as possible.
So, back on the treadmill I went. There were things that needed to be done to prepare for this next phase.