OHHH, Good Question.
So, what does life “look like” with multiple myeloma?
I am pretty sure that it looks different for each and every one of us. Having Multiple Myeloma (MM) can manifest itself in so many different ways that it is sometimes very hard to comprehend the totality of our situation(s). My MM experience may not be even close to your MM experience. It is quite possible/probable that what I have written about in my column may be one giant “swing and miss” - in a relatability sense. However, I charge on in the hopes that there is a connection being made that is of benefit to others.
Which naturally leads to the question about living life with MM. What is that all about?
Aside from accommodating life’s usual routine trials and tribulations, living the MM life for me has most definitely been about adapting to change and my ability to manage something that was dropped onto my lap without warning.
Not having had any previous experiences with a chronic disease, trying to make sense of what has happened/is happening was/is difficult. Even after six and a half years, I still struggle with just the idea of having cancer. Adjustments to a preconceived notion of what my life was going to look like are made daily. And it’s the acceptance of those adjustments (both physical and emotional) that define my not-so-new reality.
Recently I got back from an automobile trip with my wife to see one of our sons who lives about 900 miles away. It was very enjoyable. Throughout much of the trip I was filled with gratitude. First off, the Covid 19 situation seems to have stabilized (or at least it was to the point of us traveling again). Secondly, my blood numbers improved to where I was able to travel. It was great getting in the car and driving West. At a dinner meal one night I told my wife and son that I was amazed at what a great life I have. Yeah, you read that right. It is not often written that living the “myeloma life” and “great life” can be inter-changeable. Yet, I stand by what I write. My adjusted gratitude for the opportunity to travel certainly was more pronounced than before.
On a journey in an auto, living with MM meant adjusting my awareness for the next available bathroom/washroom facility. It meant a constant vigilance for road signs indicating rest-stops, convenience stores and fast-food restaurants that can service an urgent need. I can tell you that my appreciation for the people who are responsible for keeping those facilities clean has been significantly adjusted. They are life’s un-sung heroes. Truthfully, I did not see that as a big concern in my life prior to myeloma. Now it is critical.
Prior to the trip, I counted and re-counted the expected days away from home and my pill needs while on the road. Do I have enough pills for the trip? What is the procedure for ordering more pills if I run out because of an unforeseen circumstance while away from my home pharmacy? It meant working out the logistics with the specialty pharmacy for the delivery of medication (very expensive pills ,I may add) at a location that I was unfamiliar with, to a third party I have never met who then has to “guarantee” me that they will be at the place of delivery at the time of delivery because a signature is required. Phew. My attention to that detail was a significant adjustment from a limited pre-cancer concern relating only to making sure there was enough aspirin in the car.
An adjustment was made to accommodate a remote video meeting with my oncologist while we were traveling. It meant my wife coordinating a meeting place (a motel lobby) along the way that carried free wi-fi. With permission, we sat in a lobby of a motel along the way discussing blood numbers, neutrophil levels, and other assorted MM related topics. I never saw myself being so dutiful in making sure a meeting was not missed.
I realize that none of the instances mentioned above constituted any major adjustments. However, they were required. It made me realize once again that my and my wife’s lives have changed. The old life gone, the new life is upon us. Adjust and move forward. Some of the time pretty painful, other times, not so much.
Many, if not all of us, never saw MM coming. Never imagined a “living with cancer” lifestyle. Yet, here we are. We do the best with the resources available and we cross our fingers. Trying to do my best means understanding, tolerating or accepting and getting comfortable with the medicinal, physical and mental adjustments of new routines.
I have learned that by accepting the re-arranging of routines and moving forward with what life brings me, I become more aware of and considerate of the re-arranging and adjustments others endure through circumstances that were laid at their doorstep. That awareness, that partial understanding has been a real gift to me. The challenge for me is to take the awareness and understanding and put it into some form of tangible assistance/practice in the service for others.