Spotlight on David McConkey: Living Remotely with Myeloma

For years, I have been running. Sometimes running in remote places such as the Midnight Sun Marathon from Arctic Bay to Nanisivik north of the Arctic Circle, the Laugavegur Trail in Iceland, the Canadian Death Race in Grand Cache, the Haliburton Forest with wolves howling and the Yukon River Marathon. Sometimes running in large urban centres among the masses, such as marathons in New York City and Boston.

When diagnosed with myeloma in November 2010, my goals were to walk without pain and to be in Newfoundland as much as possible. I have reclaimed running once again, although with the myeloma, treatment fatigue and aging, I am now running a fraction of what I used to, with shorter distances and at a slower pace, closer to my home in Newfoundland. Finding runners with myeloma, such as Craig Finkenbeiner, provided a hopeful reference point and inspiration while on the journey that included a stem cell transplant in September 2012, 16 months of complete remission, followed by three and a half years of oral chemo and then the current IV treatment.

As part of reflecting on my personal story with a remote theme for this community spotlight, I decided to check in with three people living with myeloma who are considered to be living in remote places.   James is a person with myeloma living much further north of me, who says “I don’t feel at all ‘remote’, just being around other people with cancer through common treatments,” James emphasizes, “support from family is foremost, then medical services including travel, lodging, insurance and care. Doctors, nurses, people in the medical field (hospitals, emergency services, etc.) and friends all help.”

Within two weeks of diagnosis, Marion found herself an eight-hour drive away from family and friends for the better part of six months, incurring physical discomfort and travel expenses beyond travel grants in order to fly home every weekend to be with family. Healthcare services tend to be closer to home these days, with the exception of a stem cell transplant. She has kept her sense of humour and acknowledges the value of a wonderful support system made up of friends and family. Marion emphasized the importance of being part of our multiple myeloma community (i.e. support groups). “No one can really relate to the feeling of living with myeloma unless they have myeloma as well. We become a 'family' - and that includes my healthcare team!”.

For Pamela, significant past out-of-town travel was mainly associated with the consultation, collection and stem cell transplant. “The first two trips were difficult because I had pain and mobility issues. The trip for the transplant was horrible. I was quite ill afterwards which meant we were there for six weeks. I missed the support we would normally have had during the ordeal and, of course, financial burden was difficult.” The value of family support was highlighted.

A common theme is the importance of informal support from family and friends while away and at home where we have a sense of self and belonging with quality of life. I am committed to living life as fully as possible on a small island out-port called Change Islands. Neighbouring the infamous Fogo Island off the north coast of Newfoundland, it is accessible by ferry with a schedule that can be unpredictable, and the small island may be looked upon as being remote, isolated and limited in resources. There is a temporal shift to ‘island time’, so you actively get caught up in the daily ebb and flow of life that compliments and centres on what is truly important. I call it home. A healing place offering the support of a close-knit, social, resourceful and resilient community clinging to the coastal volcanic rock, with trails to run and hike that may offer sightings of icebergs and whales.

My view of the place is much more in-tune with the experiences and views of those deemed as living remotely with myeloma. There is a rich quality of life that comes with ‘off the beaten path’ settings that are wrapped in the support of family and/or friends, particularly when one can remain connected through technology and have access to Myeloma Canada’s network of support groups. The portability of an all-oral treatment regimen meant I could be home, or elsewhere, 21 out of 28 days per month. A significant benefit allowing one to focus on life-living and not tying-up staff and resources at a cancer treatment centre in a large urban area that also requires time and travel.

Photo credit: Tony Brathwaite

With the need to shift to an intravenous drug administered at a cancer clinic, my daily routine has changed dramatically. Krypolisâ (carfilzomib), is working well at this time, so I am not complaining and I am whining less as I accept this as my current life’s work. Like many in an out-port community or living remotely, life work often requires one to work away. My past routine reluctantly had me going off the island once per month. This new weekly routine involves about six hours of travel each way, including a ferry crossing and a road trip, a 10 km round trip walk for my intravenous treatment in a hospital setting for two consecutive days, three out of four weeks per month. As of mid-July, it will be one year on my current treatment regimen, and now with a dose reduction, I will only need to do the commute twice monthly. Those days per week that are not medical or travel-related remain precious. Personally, I am appreciative of a home-away-from-home while staying in St John’s and the excellent support I receive at the Health Sciences Centre there.   Being diagnosed and dealing with myeloma can truly be catastrophic at times and although it may be stressful, we still go to where we need to go and do what we need to do when medical needs require us to. These critical times and events can be modified or exasperated by the support and resources (or lack thereof), as well as our perceptions, no matter where one lives. Heartfelt island hugs to those who are managing well and/or struggling, regardless of where they reside.   Given my experience and that of others, I strongly support the treatment and medical support close to home, where we have access to the informal support of family and friends, as well as research advances allowing the portability of an all-oral regimen, enabling us to be where we most want to be, in place and in time. David McConkey

In addition to David being a runner with myeloma, he is an artist who recently collaborated with poet Tony Brathwaite on a book entitled “An Other Being”. He is a Co-support Group Leader of Myeloma NL and is the Atlantic Region Representative on the Myeloma Canada Patient Advisory Council. He is currently looking forward to an April run/walk for three consecutive days on the Mountain to Sea Trail in North Carolina with Kenny Capps, a runner with myeloma embarking on his “Throwing Bones; Blood, Sweat and Cures”; as well as an upcoming Drum Circle fundraising event for Myeloma Canada in early March and the St John’s Multiple Myeloma March in September.   Our appreciation goes out to those who inspired and contributed to the theme of this article including James Nitsman of Labrador, Marion Bentley and Pamela Orchard of Sault Ste Marie.