I am a 67 year old WM patient living in Calgary, Alberta, Canada. My wife, Nancy, and I lead an active lifestyle, especially since retiring about 5 years ago. We are avid downhill skiers and love to tour on our Harley Davidson motorcycle. We spend the summer months at my family cabin on a lake in Northwestern Ontario where we must cut and split firewood to “feed” the cook stove, bath in the lake, use the outhouse, and carry water in pails. (No comforts of the big city!) Since retirement, we have spent over 40% of our time away from home – hiking, riding, skiing, sight-seeing and enjoying new places in Canada, the US and Europe. Life is GOOD!!
Here are a few details of my journey with WM.
- In 2002 I started to experience some symptoms that I was not used to. I had a terrible cough and was losing weight, no matter how much I ate. I was anaemic. I suffered with lack of energy.
- I saw my family doctor on numerous occasions, and was referred to other family doctors – no satisfaction.
- I was referred to an internal medicine specialist to deal with the cough, which had by this time caused rib damage on 2 separate occasions.
- The specialist ordered numerous tests – nothing was conclusive; except my blood reports were something he had not seen before.
- I was referred to a hematologist/oncologist.
- By now, besides the other symptoms, I was also suffering from severe night sweats.
- The hematologist told me that he believed he knew the problem and ordered a bone marrow biopsy for that week.
- By this time the “clock” had run to late August of 2004.
- While we waited for results and diagnosis, Nancy and I did one of the best hikes we have ever done, a very strenuous, all day trip, in the mountains of Southern Alberta on Labour Day weekend, 2004.
- Diagnosis came the following week, I heard what I had not expected to hear – the statement – “you have cancer”. Even though it was cancer, it was treatable; although not curable. And it had a HUGE name: Waldenstrom’s Macroglobulinemia!
- Although diagnosed, this cancer was different than many others – it did not require immediate treatment. I was put onto a “watch and wait” program.
- I did what many others would naturally do – I turned to the internet.
- I found the IWMF, joined the foundation, got printed material, and educated myself as best I could – I was unaware of other patients in Calgary with the disease.
- Soon after diagnosis I went for a walk with my 2 dogs. As luck would have it, I ran into a friend who lived close by. Cam got his dog and we continued the walk together. As we walked, I told Cam of my diagnosis. Cam’s response: Strange thing about that – I have been diagnosed with the same disease! Very coincidental, given the frequency of occurrence.
- I continued to be monitored by my oncologist, having monthly blood work.
- In April 2005 I told my oncologist that I was really struggling with how I felt; my energy level, my cough, the night sweats and my weight loss. At 57 years old I weighed less than I had in high school.
- Treatment began immediately. It consisted of Cyclophosphamide, Fludarabine, Rituximab and Prednisone.
- I handled the treatment well – other than treatment day, I hardly missed a day of work.
- Recovery was good – blood reports were also good. Seemed that the treatment had done its job.
- I continued to be monitored quarterly by my oncologist, but did not let this slow me down – I was active.
- By August 2009 some of the symptoms had returned and I was not feeling as I should. Blood work and symptoms said treatment must start again.
- Four years, four months after the first treatment concluded, in September 2009 the second treatment began – Cyclophosphamide, Vincristine, Rituximab, and Prednisone.
- I handled the treatments well, but have had some lasting side effects of the Vincristine – slight neuropathy in my fingers and the soles of my feet. Nothing that has deterred me from skiing or hiking, or taking long rides on the Harley.
- I have continued to be monitored since treatment ended in December 2009. At this point, although the numbers have crept up, there are no symptoms nor is there blood work that indicates that treatment is close at hand.
- This past April, Nancy and I hauled our Harley Davidson motorcycle to Flagstaff, Arizona. We set out on a bike trip that was to go through Arizona, New Mexico, Texas, Louisiana and was to end at Tampa for the 2014 Ed Forum. Our accommodation was about a 50/50 split between timeshares and tenting in KOA Kampgrounds. We had an excellent trip, most often on secondary highways, as far as Rockport, Texas when a rainstorm washed out some of the roads and the accommodation we were to use in Louisiana and the Florida Panhandle. Not deterred, we changed our routing and returned to Sedona, Arizona. We hiked for several days then flew to Tampa to participate in the Forum.
- Along with my friend Cam Fraser, I co-facilitate the WM Support Group for Alberta. I strongly believe that a positive attitude and a healthy lifestyle have been to my benefit. Nobody likes knowing that they have an incurable disease, but I have taken the attitude that nothing is going to get in my way of striking things off my “bucket list”. I truly do enjoy talking to other patients and caregivers about our ability to continue to enjoy our lives and the retirement we saved and planned for.