Chris’s story was first published on www.iwmf.com on September 15, 2014, with the author’s approval, as a reprint from the Cancer Support Community of Lehigh Valley, www.cancersupportglv.org/get-support/stories-of-hope/chris(link is external).
Chris’ 2018 update to the Story is included below.
The Story is printed as told by Chris in 2014 to the publisher of the Cancer Support Community of Lehigh Valley, and the 2018 update to Elena Malunis of the IWMF.
Chris’ Story – September 2014
Several years ago, I was diagnosed with Waldenstrom’s macroglobulinemia (a mouthful), a rare blood cancer in the lymphoma family, closely related to leukemia. Chances of getting it were estimated to be about 0.03/1,000,000. There is no known cure. With those odds, I’d rather have won the Powerball!
Though I was told that the cancer was indolent, or slow-growing, my expected survival was, at that time, estimated to be five years, give or take.
I’m not sure whether I received that as good news or bad news. It just became the fact of life for me, which I chose, for the most part, to ignore. My family, after all, was riddled with all sorts of cancer, and as much as this may sound strange, I thought I could live with it. My grandmother died from pancreatic cancer; my dad, lymphoma; and my mother – still with us at 80 years of age – has survived both Non-Hodgkin lymphoma and endometrial cancer.
This thought, though, did change when my younger sister was diagnosed with ovarian cancer. She had an 18-year-old son, leaving for college out of state, and a daughter, only four years old at the time of diagnosis. She suffered immensely, and had all the telltale signs of a cancer patient; losing her hair, losing weight, constantly sick to her stomach, and more. She suffered, after trying every possible treatment, for nearly four years, far longer than most. She died two years ago last June. If I could have changed places with her, I would have. I couldn’t.
How does this affect my story, you ask?
Because my cancer is indolent, and the treatment more modern, biologics like Rituxan and Velcade were used in my treatment plan. I did not lose weight; on the contrary, the steroids I received to help me tolerate my chemo added nearly 50 pounds to my already-somewhat-round waistline, weight I still have with me today. My hair has thinned, naturally, and I never lost hair due to treatment. I did however, suffer a side effect, known as peripheral neuropathy, something any diabetic would tell you is not fun.
Because time has elapsed from my initial diagnosis until now – and I’m still alive – people no longer look at me as a “cancer patient.” The story has grown “old,” and no longer topical. At work, I chose to share my story early on, as I knew I would be missing time for chemo several times a week, for several months. I had the support of my coworkers, but, as with most things, time passes, and people forget. The good news is that I must look good, if not fatter from the treatment, and no one sees me any longer as an active cancer patient, which I still am.
However, now my need for time off has become bothersome, and I often think that some of my coworkers wonder when I will die, and get it over with.
Statistically speaking, the longer I live, the longer I’m likely to live. This is good, no? I receive excellent treatment from the staff at two hospitals. I hope that more strides are made in my very rare disease, and that the years will keep adding up until I die of “natural” causes, with my cancer being a “chronic” condition and no longer a death sentence.
So, what is moral of this story?
Take charge of your illness, surround yourself with those who stick with you for the long haul, and support you in good times and bad. Don’t be afraid to ask for help, and be grateful for what you receive. Educate yourself and your family. Do not fear, but fight.
Let your life become that shining beacon, an example for others who will follow. One day a “cure” may replace the word “terminal.”
Chris’ update – November 2018:
First of all – I am still alive, now at double the longevity of the survival rate of “5 years” several years before my 2014 treatment. This is a good thing. Progress is being made every day, though a cure still seems far off. I guess it’s a good thing that Waldenstrom’s is a lazy cancer, growing slowly for the most part.
Since 2014, I am lighter, both in weight and in body parts. I have had multiple operations and biopsies performed, and whether or not they’re related to WM is unknown. I’ve had my gallbladder removed, a prostate biopsy with questionable results requiring periodic follow-ups; a good portion of my stomach has been removed, with the resulting biopsies revealing “more than 25 polyps”. Is more than 25 a lot I asked? The response was “we stop counting at 25,” so I guess the answer is yes. The gastric sleeve was a boon for weight loss, though I can no longer enjoy carbonated beverages (I was a diet coke addict), or a “full” meal for that matter, having to exist on six to seven meals daily, not to exceed 6 ounces at a time. Needless to say, there are lots and lots of vitamins to ingest as well. As an older man with an enlarged prostate (Benign Prostatic Hyperplasia i.e. BPH), I have the typical resultant symptoms, some managed by medicine and more recently with the latest BPH procedure, known as “UroLift,” which is quite well-named as it would turn out – picture a few stents with a “scaffolding” between them to essentially hold the prostate gland, lifting and separating, allowing for a better plumbing functionality. It works, and I now have a new appreciation for women’s gynecological exams as well. It was effective, but a bit intrusive as a procedure.
I have just completed my fourth colonoscopy this year. This has become a regular event. Apparently, another “polyp farm” is in the making, requiring surgically removing the “crop” before it grows out of control. Is it a bad thing that you know your medical record number by heart? I don’t think so. It is also comforting to see the same medical staffers each time and that they remember me and my underlying conditions – it certainly makes for a speedier pre-op discussion, to be sure.
My “numbers” for WM have remained somewhat stable, with minor roller coaster results now and then, but nothing off the chart, to be sure. My latest CT-scans revealed only small items worth watching for in the future, so this is good as well – and it’s been four years since my treatment. Time does fly when you’re having fun. As before, I try to ignore the daily effects of neuropathy, headaches, numbness and the like, and focus more on the positive aspects of being alive.
I recently returned from my first overseas trip. The tour included stops at Lourdes (in France) and Fatima (in Portugal). Along this journey, we encountered many young, and not so young pilgrims, who were recreating the Camino de Santiago i.e. “walk of St. James,” about 518 km in length. Talk about a journey! I liken this walk to the fight for the cure – slow and steady will not only finish the race, but you will encounter wonderful people along the way.
I look forward to the opportunity to write another update – perhaps with a cure?
Chris Moakley
Coplay, Pennsylvania
November 2018