Over the past few years, I have had more than my share of navigating my way through the emotional and practical aspects of my treatment for mantle cell lymphoma. While at the back of my mind the broader questions – why me?, how long will I live? – remain, once I got over the initial anger and depression after the initial diagnosis (and after my relapse), I found these practical tips and approaches helped me and my family get through it all:
1. Be thankful for what you have. I am unlucky – I have an aggressive form of lymphoma that can be treated, not cured. However, if I am unlucky with cancer, I am lucky in the strong support of my wife, family and friends on the emotional and practical side. I also have a good benefits plan, along with free healthcare, so I have no financial worries. And whenever I go to the hospital, I am reminded that there are people worse off than me.
2. Take it one step at a time. I could not process all the information and treatment plan at the same time. I could not worry about whether the allo SCT would work and whether I would get GvHD at the same time. The best advice I got from the medical team was to take it step by step. Worry about the current stage, not the future. By dividing treatment into “chewable chunks,” I could also celebrate each milestone – getting through each round of chemo, getting past the first month post-transplant, making it to the 100 day milestone.
3. Don’t get spooked by the stats. In my case, the stats are awful (overall, 50-60 percent mortality within one year). But these are averages, I am an individual. I took the stats seriously, but also, with my medical team, placed the stats in the context of my age, general health, and previous treatment, all of which improved my odds. Some doctors were better than others in walking me through this.
4. Research but not over research. At the beginning, I spent far too much time trolling the web for medical information and patient experiences. After a while, I found my balance between enough information to be knowledgeable but not so much to become obsessive and worry even more. I also found that a lot of information was dated, and it was better to focus on getting more recent information from my medical team.
5. Own your file. It was my life at stake, and I needed to manage my information and interactions with my medical team. I started a binder, organized by topic, and then switched to an iPad to take notes for my appointments. I always would come prepared with questions for my doctors, and, given previous notes, could challenge them when treatment directions would change. My medical team knew me as an empowered and prepared patient, and it strengthened our relationship and my understanding of the why. Of course, these practical suggestions need to be complemented by a deeper reflection on what you want your life to be, during and post-treatment.
None of these make the journey easy or diminish what is a hard road. However, together, they all helped make it more manageable for me and my family.