8 Tread lightly, you could break a bone!

I told you in my last post that I had gotten a skeletal CT scan a week ago Saturday, November 9th. I know what these scans are looking for and I was somewhat apprehensive about getting the results. I still haven’t heard from my oncologist about the scan and I won’t be talking to him about it until Wednesday, the 20th. However, my GP called me on Friday the 15th at 5:30 PM to talk to me. Truth is, whenever my GP calls at 5:30 on a Friday evening it’s never good news.

The first question he asks me is if I’d heard anything about the scan. I said no, nothing. He then proceeds to tell me that I have a four centimetre tumour (lesion) in my right femur. Now, that’s a fairly large lesion but it’s in a fairly large bone too. Still, one of the main problems with multiple myeloma is bone lesions. Patients can have several bone lesions simultaneously making their lives somewhat precarious. Any wrong move can lead to broken bones and immobility.

My GP is rightly concerned about this femoral lesion and tells me that I may need a full length splint to keep my leg immobilized but it’s Friday evening now and I’m in no shape to even consider getting one, especially if it means going to the ER. That’s not going to happen. Not in a hundred years!

After a time my GP and I settle on a plan to keep me more or less immobilized, at least until Monday. Carolyn and I get back to our dinner. A while later my GP calls again after having consulted with an orthopaedic surgeon. The surgeon tells him that I will probably need radiation on that tumour and that radiation treatments happen in Victoria. Until then, I need to keep my right leg as immobile as possible. We’re getting a wheelchair on Tuesday. That will help, and on Wednesday I talk to my oncologist about where we go from here in terms of chemotherapy and now radiation treatments.

You know what? I want some straight answers. That’s all. I know that straight answers are not as easy to come by as they should be, but I’d like a clear, unadulterated assessment of my prognosis at the moment, if you don’t mind. So far, my oncologist and I had not even discussed bone lesions and the treatments for them, and we assumed that the lenalidomide/dexamorphosone chemotherapy drug combination would work and that we would reassess in a year or so.

Yes, I understand that multiple myeloma is highly treatable although it’s incurable, but every myeloma patient presents with an idiopathic set of conditions making blanket prognostications about remissions and potential lifespans kind of useless, if not overly optimistic. So far I have no idea how bad a case of myeloma I presented with and my oncologist is not really interested in what stage I’m at. He says he’s much more interested in how a patient responds to treatments than where they might be on a staging continuum. That’s fine. I hope that sometime soon we will actually be able to assess just how I’m doing on a new course of chemotherapy drugs and that we will be able to conclude that what I’ve experienced so far is a temporary glitch in my treatment.

Whatever. I like taking road trips on winding roads in unfamiliar territory, but a nice stretch of open highway now and again can be exhilarating too. I’d like to see some open road for a change where obstacles can be seen a long way off and I can put the petal to the metal. Is that too much to ask for?

2 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.