Multiple Myeloma Makes Me Special!

I’m always a sociologist so whatever happens to me triggers an instinct I have to do check it out, do the research, connect the dots. In my book, the more information we have the better. At the moment, we have an information deficit and that’s frustrating but, hopefully, that’s about to change.

In any case, one of my first research stops is Statistics Canada. What’s there to learn there? Well, for one thing, multiple myeloma (MM) is a pretty rare form of cancer and that makes me special, don’t you think? Stats Can reports that there will be about 3000 people in Canada diagnosed this year with it. That’s not a very high number. Stats Can also projects that from 2018 to 2022 only 70 men in BC will be diagnosed with MM in my age group every year. Because doctors seldom encounter it, it can be difficult to diagnose, but back to that in a bit.

I’m in good company too when it comes to MM. Jim Carr, the Liberal Member of Parliament for Winnipeg Centre and Minister of International Trade in the Federal Cabinet, was diagnosed with MM the day of the election (Monday, Oct. 21st) when he went into the hospital complaining of flu-like symptoms. By Tuesday he was receiving chemotherapy and dialysis and by Thursday the CBC was reporting that the Minister said he was doing fine, felt okay and was going to continue serving his constituents and the Canadian People. I’m so happy for him. He won’t be cured, but he will probably be able to function quite well for some time to come. By contrast, my doctors knew I had MM three weeks ago and I have yet to see an oncologist and will have to drive 225 kilometres to Victoria for the pleasure. Living in the boonies as we do, access to specialized health care can be spotty at best and will only get worse if the Vancouver Health Authority has its way. (That’s the subject of another blog post but DecafNation, George Le Masurier’s excellent blog, has been on to this for some time). It’s true that an oncologist in Victoria is on my case and has already prescribed medications for me and I got an infusion of a drug a couple of days ago at the hospital here to help with the pain and ‘strengthen bone’. Still, I feel that I’m not getting the level of care I would have gotten if I were a member of the Canadian political aristocracy or if I lived in a large metropolitan centre. My age likely has something to do with it too. I’m an old guy and not likely to live too long anyway and besides, I’m no longer a contributing member of the economy having retired from teaching at North Island College in 2012. Does that sound like sour grapes? It may be, but socio-economic status (class, gender, age, and geographical location, etc.) has a lot to do with health care provision whether we like to admit it or not.

Alright, so back to my situation. I’ve probably had MM for a long time. I have low B12 and was diagnosed with pernicious anemia at one time by a locum (temporary replacement for my regular doctor) , but my doctor didn’t really accept this diagnosis and prescribed B12 monthly injections (which I do myself). The thing is, I had been going to my doctor for years complaining of being tired, having brain fog, being in lots of pain, and suffering from peripheral neuropathy. To give my doctor credit, he ordered MRIs of my brain and spinal cord, lower back, ultrasounds, etc., because there is a history of Multiple Sclerosis and other immunological diseases in my family. To add to this, I has a kidney removed in 2002 because of renal cell cancer, leaving me with one kidney. For a long time we tested my creatinine levels to ensure my kidney was functioning properly and it did for years. In the last three or four years however my kidney showed signs of being very unhappy. Creatinine levels were rising and still are, and I was getting weaker and weaker all the time with worsening symptoms.

My social life was taking a huge hit. Over the past few years I’ve had to pretty much give up going out in the evening because I’m exhausted. I had to give up life drawing, printmaking and sculpting. I had to resign from the Village of Cumberland’s Homelessness and Affordable Housing Committee and I had to resign as Chair of the Board of the Comox Valley Art Gallery (although frankly I had been doing that long enough). I can no longer go on long walks with Carolyn, something that we both really enjoyed.

After a while, I think my doctor kind of gave up trying to figure out what was wrong with me and I was beginning to wonder if it was all in my head.

About a month ago, all that changed. We had gone camping in Strathcona Park in August. I was not feeling great, but well enough to get the canoe out and paddle/sail/motor around a bit. A couple of times, however, we got into bucking huge headwinds and were forced to paddle hard. Carolyn and I are seasoned paddlers and we know what to do. I felt pretty strong and we handled it fine. Of course we had some muscle pain, but scotch helped out with that a bit! Then my daughter and her family joined us. One day as I was sitting at the camp site doing nothing, my back started hurting something awful. By the time I decided to take some ibuprofen (not to be taken by anyone with any kidney issues) my pain was pushing 9 or 9.5 on a 10 point scale. I was taking T3s like they were candy. When it was time to go home, my son-in-law drove the truck and trailer. I rode shotgun. I have driven very little since and not at all for the last month.

A short time later, I made an appointment to see my doctor to let him know about the back pain and my use of ibuprofen. He figured we had better do some blood testing and we did. He was headed out on vacation for three weeks so I wouldn’t be seeing him again until Oct. 22nd or so. Well, he called me on Friday at around 5:30 and told me that my kidney was leaking protein into my urine and that he had referred me to a kidney specialist in Nanaimo. That was a bit of a shock. I didn’t quite know what to say so I left it at that.

Over the weekend, Carolyn and I sat down and wrote down all of my symptoms and questions to which we wanted answers. On Monday, I called the medical clinic and got an appointment to see a locum to ask questions about what a protein leak meant and to lay out my symptoms. Well, he ordered more blood tests and imaging. We saw him again on Thursday by which time he already had a strong suspicion that I had multiple myeloma. On Friday he called and pretty much confirmed the diagnosis. On Monday we saw another locum and she ordered more tests and imaging as well as a bone marrow biopsy. She also referred me to the Cancer Clinic in Victoria.

So, in less than ten days, the locums had figured out that I had cancer and were moving fast to get me treatment. Possibly all that it took was a fresh set of eyes on my case. Certainly, the referral to the kidney specialist would have got me some results but I’m not scheduled to see him before November 7th. I wondered what my regular doctor would say when he got back from vacation. I am definitely pissed off that I went so long undiagnosed, but I don’t really blame my GP entirely for that. I may not have impressed on him the real state of my distress and MM is not easy to diagnose because it shares symptoms with so may other ailments. Besides, raving about past injustices will get me nowhere. I need to focus my full attention on the present and the future.

So, in any case and in the meantime, I called the Cancer Clinic and a person there confirmed my referral, gave me an ID number and said that I would be seeing such-and-such a doctor. Well, my regular doctor informed me just this past week that there had been a mix-up in the referral and that I would be seeing another doctor at the clinic. We have yet to hear from the Cancer Clinic. If I don’t hear from them by tomorrow afternoon I’ll be calling them again. We need some goddamn answers and I need to get some goddamn treatment. Stay tuned.

Life is like that: staving off dementia

I haven’t posted on this site for some time because my life has taken me into other directions for a time now.  For instance, I’ve had physical injuries to consider and pain is my constant reminder of my humanity.  It also limits my mobility since some of the pain I’m experiencing is in my right knee.  The pain makes it difficult for me to walk any distance.  I also tore a rotator cuff and that’s a bummer.  Still waiting to see an orthopaedic surgeon on that one.  Yet, I’m happy to report, things are improving. The pain is becoming manageable and I’m taking fewer meds than I have been.  I’m trying to cut out some of my meds altogether but I’m no martyr so if the pain gets intense again, I’ll be right back there gobbling pills.  I’ve tried physiotherapy – different kinds – but the pain is not from muscular injury but rather from connective tissue damage so working on my muscles has limited effect, at least that’s what I think.  Besides, all that stuff is expensive and I don’t have a limitless pot of money to play with.  Still, things are moving along.

I’ve been able to help Carolyn in the yard putting railings on the stairs, etc., in preparation for the garden show we were featured in this past July 27th.  I love my woodworking shop and have been spending lots of time in there. The garden show was fun, but leading up to it was hard work and required lots of meds and rest times for me to carry on.  Maybe I’ll post pictures here soon of what we’ve been doing. Strangely, I’ve been indifferent towards painting and drawing recently although I’m now feeling the stirrings and I’ve picked up the coloured pencils again.  I have a painting that needs finishing. I’ve been thinking about it a lot and planning how to tackle the next set of challenges with it, but I have time coming up so I’ll get back to it soon.  Doing portraits for some people is easy but I have to work at it.  That’s part of the fun of it.  I’m also working up to doing some sculpture in wood.  I need to get my tools sharpened and that in itself is a challenge.  I need to get lessons on how to do that quickly and easily.

All this to say I haven’t been spending a lot of time posting on this blog.  I have been thinking about what I want to do with the blog, but I have lots of doubt whether or not any of this is worth anything.  It’s not as if I have nothing to say, it’s whether anyone is listening that is the issue and what difference it might make one way or another.  It may be that I use this blog to work out issues I’m thinking about with regard to politics, social action, evolution, economics and such things just for the challenge of getting my ideas straight. It might just help stave off dementia as I get older.  At least that’s what I want to believe.

I know where I was conceived.

I know where I was conceived. It was in a small rickety, squeaky bed in a small room at the end of a small corridor, door on the right. I’m quite convinced all nine of my younger brothers and sisters were also conceived there although I can’t be absolutely certain. I’m not at all sure of where my older siblings were conceived. They are my father’s children but not my mother’s. They shared this house with the rest of us but the details are not important for now. The small room where I was conceived was also the room where the baby of the family slept. There was always a baby in the family as I was growing up.

 

The house containing this small room was also small, and it was always full of children. It no longer exists. The small room and the small house are gone now, torn down and replaced by a large brown duplex not so many years ago. No one driving by on the inconspicuous street on which it fronts would ever know that the house in which I grew up had ever existed. Yet there was life there, lots of life. There still is life on that same place, in the brown duplex, but the people living there now would have no idea of the life that preceded them in that very location years before, just as I have no idea of the life that goes on in that duplex now. We share the experience of a place those duplex dwellers and I, not that they are aware of that. Why would they be?

 

January 29th, 2015, marked the 69th anniversary of my parents’ wedding day. My father has been dead since April, 2007 but my mother lives on in body if not in mind. She no longer recognizes the faces nor the voices of any of her family members and every moment of her life now is disconnected from her past and even from the very moment preceding it. She spends most of her days in a state of catatonia, as a result of years of dementia, she cannot feed herself and three years ago she was beaten up by another resident of the home in which she lives, but that’s mostly forgotten now.

 

In days gone by, when I was born, say, there was much life in my mother. She was a young, beautiful, strong twenty-one year old woman, twelve years younger than my father. In her time, she bore ten children, five daughters and four sons. I’m the oldest of my mother’s children but the sixth oldest of my father’s. He had five daughters from a previous marriage before his wife died in 1946 in childbirth bearing her sixth child, a son they were to call Roger. He shares a coffin with his mother.

…to be continued sometime.