In August of 2004, I was diagnosed with a very large and aggressive tumor in my abdomen that eventually was identified as a “B-cell Non-Hodgkin’s Lymphoma with unusual architecture.” When I learned I was not in remission after ten cycles of three different and increasingly intense chemo regimens, I was told my last-ditch hope was a stem-cell transplant followed by multiple radiation treatments. Unfortunately, the chance of success without achieving remission from my particular “chemo-resistant” tumor was only 15 percent, so I had to make a decision about whether or not to proceed anyway. At that point, I contacted the wonderful people at the National Bone Marrow Transplant Link (nbmtLINK) and asked if they knew of anyone I could talk to who had undergone a successful autologous transplant without having been in remission. Within a week I received phone calls from three different survivors, one eighteen years post-transplant. Each of them gave me reason to hope. All of them assured me they would go through a transplant again, if needed, to gain the life they were leading afterwards. Their encouragement was all I needed to hear before taking the chance myself.
Today, I have celebrated fifteen “second birthdays.” Now I am the one who can tell others it was more than worth it. As soon as I was cleared to do so, I took the training to be a peer-support volunteer for the nbmtLINK so I could pay it forward. I have spoken to numerous people from all over the country who needed the reassurance that can only be offered by someone who has “been there, done that, and come out on the other side.” A few of them became “phone-friends” who kept in touch throughout their own transplant journeys.
In 2010, I wrote a book called Gathering Stones: One Woman’s Personal Journey through Cancer, which can be found here.
I wrote the book to help other people by sharing some of the methods I used to help myself cope and the lessons I learned along the way as I fought my way back to good health.
I heard recently that the nbmtLINK is focusing on the late-term physical and emotional effects of transplantation, so I am writing this blog as another way to give back… showing that cancer does not need to define a person. As one of my dear friends said, “Some people not only had cancer, but now cancer has them.” I believe it is important to leave the cancer behind and move on with the rest of life once one has achieved remission. I certainly understand the dread of recurrence, which can be debilitating. However, I counteract that by vowing not to ruin every blessed day of remission I have been given by worrying about how many more I might get. And for those of you who are “newbies” at the remission game, I can say those fears have lessened over time until now the experience almost seems to have happened to someone else, someone I cared about, but not to me.
One of the suggestions I have often given to people facing a transplant is to think of it as “an investment in your future,” and a future can be well worth that risk. I honestly can say that if I were given the opportunity to go back and erase my cancer experience, I would not do it because it has taught me so much and equipped me for the life I am living now. It gave me the resilience I needed to undergo four major surgeries within the first five years, post-transplant. The challenge I faced gave me the empathy and compassion for others’ suffering that serves me well as a Hospice respite care volunteer who provides relief for families taking care of patients in their homes. And over all, the experience gave me a stronger faith in the God who listened and guided me though a harrowing ordeal. There is no doubt my cancer experience has changed me and the way I live each day. My life now is a good one, made better by having faced and conquered the beast called Cancer.
Martha Nielsen
