Challenges. Throughout our lifetimes we all face challenges, but nothing, in my opinion, come close to the various and numerous challenges inherent in dealing with cancer.
I was diagnosed in the fall of 2004 with multiple myeloma - a complicated, incurable, but treatable blood cancer. Not only are there various aspects of the disease, each aspect can affect each patient differently.
My first challenge was upon being diagnosed
While on a business trip to Western Canada in late 2003, I decided to spend a day or two skiing in the back country (in and outside of Delirium Dive, part of the Sunshine ski area). Prior to accepting a company move to Toronto, we lived in Calgary and being an avid skier, I was very familiar with the area. A good thing because I locked up my
back skiing in wind-blown crud several kilometers in the backcountry. It took me many hours and most of a bottle of ibuprofen just to get back to the resort area, never mind back to Toronto. I assumed being healthy, fairly young (54 at the time) and in pretty good shape, that I had torn some muscles. I proceeded to treat the injury accordingly, with little to no success.
After several months and various treatments, I took the advice of a sports therapist and went for an MRI (the last several months of treatments is a story in itself, one I am more than willing to share with anyone who may be interested). While on the MRI table I was told that I indeed had back problems: two badly broken vertebrae. I asked what would cause such a thing (note I was several months removed from the skiing incident in the West). I was told that while "not a diagnosis" my injuries were "consistent with" the disease multiple myeloma. I had to go home and look it up.... my first experience with Doctor Google.
My next challenge came with trying to understand this very complicated blood cancer disease
I think it is safe to assume that most of the people reading this are dealing with myeloma and know it is a cancer of the plasma cells. It is very complicated and you have my empathy if you feel somewhat overwhelmed trying understand this thing! Heck, I've been dealing with this for over 12 years - Doctors, lectures, group sessions, forums, symposiums, educational forums, conferences, many, many websites and frankly, I still do not "really" understand it, never mind the range of treatment options. It really frustrates me that I have something that is killing me and I can't sort out not only how I got it, but also what is the most appropriate way to deal with it. I would like to say that over time I have learned to accept it and live with it but that is simply not the case. While perhaps not as frequent, my search for understanding is never ending. I suspect it is similar with most myeloma patients.
My treatment challenges fall into two parts: mental/psychological, and physical.
The Mental Challenges
I feel quite strongly that the mental challenges of this disease and its treatments have been more demanding than the physical ones. Care itself can be a big challenge. I have little to no patience with what I feel are general and patronizing statements and ignorance regarding my heath and treatment of this disease. This includes healthcare professionals and friends. I received the formal results of my original MRI from a GP whom was filling in for my regular GP who was away on holidays. I could sense her nervousness and unease. Delivering such news cannot be easy. After telling me the basic facts she added, "if you have to have cancer this is one of the better ones to have." I stopped listening at this point. I am sure she mentioned the next steps, available treatments etc., but all I heard was the old justification scale, that I should feel better because I could have had something worse. I replied to her "What kind of comment is that? There is absolutely no good kind of cancer!". The words were barely out of my mouth when I immediately felt badly about what I had said. There were two reasons for feeling this way. The first was that it was obvious that I had hurt her. Her message had hurt me, so I felt compelled to hurt back, even though the message was no fault of hers. The second reason was a little scary. I realized that she really didn't know all that much about the disease.
The mental challenges of this disease on yourself, family, caregivers, friends and work associates are extreme. Literally everything in your life changes. I found that I needed as much if not more help with the mental aspects of the disease as the physical. It was extremely tough knowing at that time the healthcare providers did not really understand the disease. Since then, I have been extremely fortunate with the care I have received from both the Princess Margaret Cancer Centre and the Juravinski Cancer Centre, which has been both consistent and exceptional.
Another mental anguish that myself and other myeloma patients face is the incurable aspect of the disease. It is a continuous challenge living in constant fear of what the future will bring. My biggest personal mental challenge is living with the disease. I long for and cherish the days when I did not have to think about it. However, the disease lurks in the corners and often doesn't take much to remind me of its presence.
The cost and procurement of drugs and treatment options is also a challenge. While I am a personal believer in universal health care and in particular the Canadian system, access to new and innovative treatments can be slow and cumbersome when trying to navigate options. Education and advocacy are clearly the short-term answers. I do get involved, but there is a very personal dilemma as a result. The involvement itself reminds me of my disease, something I long to forget. Regardless of how much I think to myself "just suck it up" or how unrealistic my longing to forget may be, the mental effect of the "incurable" aspect is a big part of this so-called journey.
There are many myeloma patients who face financial challenges. Some worry about how to make their monthly rent, while others, like me, think about how to deal with the US $22,000 cost per month for access to drugs not yet available in Canada. In some aspects I was very fortunate to have "acquired" this disease later in life (54), so I was for the most part nearing the end of my working career. I initially worked during my first treatment regimen, but found it extremely difficult, and as such cannot imagine having to work during treatments for any length of time.
Thankfully, we did have some money saved and since my wife is still working, we are not in bad shape. I like to say that while not rich, we are not indigent either. No one in this country should be forced to deal with additional stresses of finance while dealing with myeloma, or any life threatening condition for that matter.
Lastly, I would be remiss to not write about what I call the "mental drain" of myeloma and other cancers. I have found, for whatever reason, a disintegration of mental acuity and confidence. Over time I have lost confidence in myself to the point that I am just not really sure of anything anymore. Knowing the maintenance of a positive attitude and actually keeping one are two very different things. There are in fact many options and groups that help deal with the mental aspects of the disease. I do work with, and am part of a local myeloma support group. I believe interacting with other patients and caregivers who are dealing with many of the same issues is very comforting. There are also patient organizations such as Myeloma Canada and the Myeloma Beacon which are also very helpful. Further, there are options such as Wellspring and its various programs that help cancer patients deal with the mental drain of the disease. They give patients and caregivers a place to go. I have completed several programs at Wellspring and have found them to be educational as well as helpful.
Everyone has their own way of dealing with the mental challenges of this disease. For
me, it is our boat. Something about being at the boat, on the boat, on the water, relaxes me and put things into perspective more than any other activity.
The Physical Challenges:
Over the past twelve years of treatment and relapse, I have had experience with most of the treatment options currently available, outside of new trials, in Canada. Also, I would like to mention upfront that many of the drugs I have received have been through clinical trials.
For me these have included:
- V.A.D.: vincristine (Oncovin®), Adriamycin®(doxorubicin), Decadron®(dexamethasone)
- Autologus Stem cell transplants (twice, each 10 years apart)
- lenalidomide (Revlimid®) and pomalidomide (Pomalyst®)
- bortezomib (Velcade®)
- steroids (both dexamethasone and prednisone)
- carfilzomib (Krypolis®)
For me, all have had some degree of success in keeping my condition under control. Some really good, others, not so much. I am always reminded of a comment I heard once about injecting foreign chemicals into your body: there are no free rides. In fact, we hear and read at length about the possible "side" effects of various compounds and groups of compounds.
I prefer to think of it simply as the "effects" of taking a drug. I don't see how "side" has anything to do with it. While we certainly want the positive effects of any compound by controlling the disease, we must deal with negative effects as well. Those we like to label as "tolerable" effects.
All drugs have different and varying effects on each individual who takes them. While there are many similarities, there are many differences. My experiences have ranged from easily tolerated, to difficult to tolerate, to almost killing me. It's been a ride, one I expect has not yet been concluded (never give up!).
It often seems to the newly diagnosed that the focus of science is on the control of the cancer and not on the cure. However, I believe we must remember that the development and manufacturing of a drug is a business, and one that has given me many, many new treatment options that were not available just a few short years ago. Frankly, I would not be alive if it were not for the new drugs being developed. Well, enough of the "soapbox", I am more than willing to share my personal experiences with any of the therapies noted above.
Please let me close by mentioning the challenges facing the caregivers. I often say, the only thing worse than living with cancer is living with someone living with cancer. Living through the effects of treatments, never mind the effects of the disease, can be be downright terrifying. Navigating the daily pitfalls of the disease, the physical effects of treatments, financial issues, family and personal issues, all often while trying to work full time, puts an unimaginable level of stress on the caregivers. I have no idea how they deal with it.
I would like to thank my wife mostly, but also all of the other people, both professional and friends who have made my care experiences nothing but positive.
This, I know, will continue.
Steve Homewood, November 2016
To contact myself or my wife and caregiver Jan, you can reach us by email at: firstname.lastname@example.org