The system failed me. And the worst part is that I was completely unaware of the issues at play. It’s one thing to miss an appointment due to a scheduling screw-up, to have instructions wrong and need a test repeated or to have obstacles consistently thrown in your path unnecessarily. But this failure is something much different. It is something I thought I had dealt with but I now know it is an issue for me more than ever.
Today, I am sterile, despite last-ditch attempts to bank my sperm after two rounds of chemo.
Within a week of being in hospital, I was quite able to recognize the shortfalls in our approach to dealing with cancer. Throughout the course of my treatment, I more specifically noted the big-time lack of focus on the needs of young adults. When you leave the kids hospital, you are thrown in the “grown-up” hospital with all the 50-80 year-olds but you have a totally different set of concerns, fears, issues, and needs.
It is this massive void that has lead to the development of the RTC vision to inspire, inform and support young adults (15-30 years) dealing with cancer. We are founded on the belief that good things can always come from bad. In fact, our existence is that belief in practice.
There is a ton of improvements that I hope to influence in our collective approach to dealing with cancer but the issue of discussing fertility and a patient’s options prior to treatment is one of the most important for me.
I was in hospital for six days before starting chemotherapy for my diagnosis of AML (Leukemia). I had a collection of tests done that week and a Hickman Catheter put in my chest, but there was no discussion about the possibility that I might be sterile from the chemo or from the possible bone marrow transplant that I might have.
The only way this topic even came up was through my request to see a Doc after reviewing a list of potential side-effects from bone marrow transplants. I was actually presented with the one-pager of info in a discussion with my doc and he ironically covered every bullet of info on the page except the final bullet which stated something along the lines, “transplant patients will be permanently sterile.”
Upon reading that line, I immediately asked to see him at which time he assured me, “Oh yeah, it’s a certainty.”
Whenever I encounter a situation that I don’t like, especially one that I don’t want to live with, my mind immediately searches for a way around the obstacle. This situation was no different.
After my second round of chemo, I traveled to Toronto for a bone marrow transplant assessment and, with the help of local healthcare professionals, I got relevant info about sperm banking options. There were no options at the time in Newfoundland but there were in Toronto. So while going to Toronto for my assessment, I planned a one week stay when I would attempt to bank my sperm.
I was already sterile from the chemo. Shitty. But always the optimist, I thought I can get around this by waiting to have a transplant for, say, six months or however long it took for what was suggested as a “temporary” sterility from chemo to reverse itself. Then I could bank my sperm, have my transplant, and hopefully live happily ever after.
I learned pretty quickly that AML doesn.t work that way. You can’t give it time to recover, I needed to maintain treatment (which was one more scheduled round) and then go straight to transplant.
I was then forced to make the most difficult decision of my life.
Have the transplant and improve my chances of a cure to 70 per cent (which means being in remission for five years) and willingly step into the world of sterility without having had the opportunity to bank my sperm.
Not have the transplant and reduce my chances of a cure to 20 per cent and hopefully have my temporary sterility reverse itself and then live as long as I could without having had a transplant.
I took about a month to make this decision. When you are faced with huge decisions, I feel you want complete comfort with one of the options in front of you. That’s how I work but complete comfort was a luxury I didn’t ever experience for this decision.
I ultimately decided to have a transplant and testing since has confirmed I am sterile. I have since had a relapse of my Leukemia and another transplant. The fertility nurse I connect with says she has never heard of anyone’s sterility reversing itself after two transplants.
I’ve beaten the odds tons of times since entering the “cancer community”in 1998. I wasn’t supposed to ever leave the ICU or be well enough to come out of my drug-induced coma in ’99, but I did. I wasn’t expected to be in remission past the fall or winter of 2003 but, a couple of days ago, I celebrated my third anniversary of my second transplant. Those odds don’t discourage me enough to loose hope because I know there’s always hope.
What really frustrates me is that this situation was very avoidable. A simple discussion that first week I was in hospital could have changed so many things for me both during my treatment as I tried to make my transplant decision and now as I build my life with my fiancee, who will be my wife as of New Year’s Eve 2004.
I have started to explore what happened that week I entered hospital. Why didn’t anyone have that simple conversation with me prior to starting treatment?
I deal through doing. The other way I want to deal is to make sure every young cancer patient is aware that they should ask the fertility question before they have treatment. Check out the implications of your treatment, ask your doctor, make sure you know your options. Check out http://www.fertilehope.org; it is a great web resource for guys and gals.
My experience is hopefully a rare one but to make sure this happens as little as possible, please share this article with anyone you know who may be young and newly diagnosed with cancer.