What a difference a year makes. But at the same time it is amazing how key things stay the same. Last summer, I wrote of chemo breaks, travel adventures, fun times with friends and family alike. All while having Stage IV cancer for more than four years. I felt great and I wanted to make the most of it – and, boy, did I.
This summer was different in many ways. In February, I was surprised with an explosion of aggressive disease in my liver. Goodbye, clinical trial; hello, emergency struggle to stay alive. It was a very rough spring but, thankfully, to paraphrase Mark Twain, “The report of my death was an exaggeration.”
But my life was changed in many ways. Although my health has returned, it came at an expense: I am no longer able to take any treatment breaks. Biweekly infusions are what is currently keeping me alive. Not the most fun summer vacation activity, but arguably the most meaningful.
Last summer, I wrote that “I would have generated good memories with the kids regardless of doing chemo or not. Thousands of Stage IV survivors are doing this successfully as I type this post.” A year ago, I wrote that as an observation — today, I write that as a fact of life for me and my family.
Yes, Dad is in bed a lot this summer. No, he is not able to travel, but family fun is too strong to be broken by such superficial things — it’s flexible. The kids are having a great summer vacation from school. Grandparents visited in June. Then the rest of the family went to visit them in July while I had my treatments and they had a wonderful time. We are planning on getting a family dog, as a part of my daughter’s 10th birthday celebration.
Cancer may impact some physical abilities but they don’t stop kids’ birthdays and the related fun activities. As my daughter told me “I’m basically a teenager now!” My response mirrored that of any father in that situation, cancer or no cancer: “Hmmm.” Cancer can’t stop the indelible march of time as children grow up. My daughter reaching double digits? As a 5-year-plus survivor of Stage IV cancer, it blows me away that I have seen this milestone. After all, my daughter was a preschooler when I was diagnosed.
Maybe on the surface this year’s summer vacation appears less exciting and impactful than the summer of 2016. But, in fact, it is just as meaningful — in its own way. The kids see Dad making the best life he can under hard circumstances, a valuable life lesson for them. They come together with me, all of us supporting each other in our own age-appropriate ways. We find ways to have fun under the current physical limitations that are ever-changing.
The picture above? It was taken this summer. I have lost a lot of weight. I was unable to gain as much jump height as I could last summer. But my “cannonball life” is not about physical abilities, it’s about attitude — and that is something cancer can’t take away. This currently incurable summer or the next.
Tom Marsilje, Ph.D., is a 20-year oncology drug discovery scientist with “currently incurable” stage IV colon cancer. He also writes a personal blog on life at the intersection of being both a cancer patient and researcher “Adventures in Living Terminally Optimistic,” a science column for Fight Colorectal Cancer “The Currently Incurable Scientist,” and posts science and advocacy updates to Twitter @CurrentIncurSci. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than one million patients and caregivers.