Myeloma and Pernicious Anemia: My Constant Companions

Pernicious Anemia

In January of this year I published a post about the connections between myeloma and pernicious anemia. In that post I misidentified pernicious anemia as a B12 deficiency. It’s not. Pernicious anemia is actually an autoimmune disease that produces antibodies to a protein called intrinsic factor that is produced in the gut and that is required to ‘extract’ B12 from food. It’s a devilishly difficult condition to diagnose. Low levels of B12 are obviously an important indicator, but there are other reasons that a person might have low B12 levels. Probably the best accessible article on pernicious anemia can be found on the Pernicious Anaemia Society’s website. It’s well worth reading.

Now, I have assumed for some time that I have pernicious anemia but I’m no longer certain. It turns out that 50% to 70% of people who have a B12 deficiency, which I definitely have, will have that deficiency caused by pernicious anemia. I have not been tested for intrinsic factor antibody, a test that would definitively confirm a diagnosis of pernicious anemia, so I don’t really know if I have it or not.

Whatever, I know for a fact that I have a B12 deficiency. In order to treat that deficiency I inject B12 (cobalamin) into my thigh every two weeks. However, because of my mixed record of injecting B12 over the past twenty-five years I may have what’s called  Autoimmune Metaplastic Atrophic Gastritis (AMAG). That just means that my B12 symptoms may never go away, even after my regular injections. Then again they may dissipate, but I have no confidence that that will happen.

An International study is now underway initiated by the Pernicious Anemia Society to try to understand the extent of the disease and to track the problems people have had with getting a proper diagnosis. It may be that we will get some answers, but I’m not holding my breath. At seventy-five years of age, I have a limited amount of breath left in me in any case so maybe I should hold on to some of my breath!

Myeloma

Yeah, well, myeloma. As I noted in my January post, the symptoms of myeloma and pernicious anemia overlap considerably. So, I have no idea what’s driving me nuts with peripheral neuropathy, numbness and tingling in my hands and feet, fuzzy brain, poor balance, weakness, especially in my legs, and bone pain, to name just a few of the symptoms I’m experiencing. It could be both the B12 issues and the myeloma that are teaming up to keep me in my place, and the chemotherapy is also no doubt contributing to my now radically re-assessed quality of life.

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So, that’s it. I’m old, I have a severe B12 deficiency that could be the result of pernicious anemia, and I have multiple myeloma, with its attendant chemotherapy.

As I lay in bed last night I harkened back to times in my life when I was still able to do things easily and effortlessly, things like canoeing, woodworking, building decks, garden structures, and a number of other physical things. I can still paint and draw, but with some difficulty. Writing is even getting to be an issue because I can barely feel the tips of my fingers on my left hand, my dominant hand.

It’s been difficult at times, not because of my physical abilities, but because of my attitude towards them. I’ve had challenges keeping the dark side away, the feeling that I can’t do things anymore like I used to, making me a lesser human being, somehow.

Carolyn and I both read the news and despair at the state of the world, but Carolyn seems to have a greater capacity than I do for keeping the dark side away and for maintaining a sense of perspective about the world. It’s true that the world is in a mess, but it’s always been in a mess if the press is to be believed. I have to keep reminding myself that the press, all of it, has a vested interest in propagating the dark side. That’s where the money is. Outrage and fear sells the goods. The bright side doesn’t.

That said, I don’t want to be captured by the dark side or the bright side. The world is a complex place. Life is finite and changes all the time. Mommy doesn’t have to change my diapers like she did seventy-three years ago, even if she were still alive. I don’t have to put a uniform on and go to elementary school. I never have to write a final exam or go on a job hunt ever again. Of course, I won’t experience the joy of the early days of fatherhood ever again either, of falling in love, nor of the thrill of discovering a wonderful, new camping spot.

I guess my point with all this rambling is that life is full of variety, both at the individual as well as at the socio-political level. Some things we call bad, some good. Those are judgment calls, which for us are adjudicated with reference to capitalist morality which itself is expressed in possessive individualism based on wealth and health. We look down on the poor and the unhealthy.

These judgments are not easy to counteract both at the individual and the political levels because they are so deeply rooted in our culture. They are so familiar to us that we consider them normal and reasonable. It’s easy to feel self-loathing for being poor or in ill-health. It’s almost expected of us. And those individual feelings are reinforced every day in a thousand ways by the vast majority of us as we compare ourselves to others, those with money or excellent health (mental and physical).

If I let myself I can easily be dragged onto the psychologically dark and barren landscape of blame and feelings of unworthiness. Enough of that now. I have a limited number of days, months, and years left to live. I cannot, I will not live them in fear and self-loathing.

Death is like a destination, one we have no choice in travelling towards. But, you know, some of the best trips I’ve taken have been at their finest and most exciting just before reaching our intended destination. Maybe that’s a good metaphor for the last bit of my life.