Yikes! It appears that it has been a year since I posted anything about my Waldenstrom’s (at least I don’t recall any posts on it recently; my mind has been on other things).
When I was diagnosed with it in 2007 I actually thought it was my death sentence, and through my chemotherapy and maybe a year beyond I was almost expecting every day would be my last.
But here I am nine years later and I feel as healthy as I ever have. I’m 66 (67 in August) and still work full time as a truck driver (actually I supposedly retired but currently I am working pretty much full time). And when I say healthy as I ever have, I mean pretty darn good. I have had good health all my life, well up until I was diagnosed with Waldenstrom’s Macroglobulinemia — let’s call it Waldenstrom’s or WM. It is a form of cancer.
My main symptom now is a higher-than-normal immunoglobulin M blood count (and that is usually referred to as IgM). I also have a continuing neuropathy in my feet (but it has not gotten any worse). An original symptom was uncontrolled bleeding from a sore on my tongue. That seemed to be cured by an infusion of blood factor 8 into my blood system.
I admit I never did do deep research into Waldenstrom’s, although I did read up on it some. At first I did not really want to know. I had a communication problem with my original oncologist. And he led me to believe I might have a much abbreviated life span. But I have to credit him maybe with saving my life. Had he not done the factor 8 thing, I am sure I would have bled to death. I went to the emergency room several times and no one could do anything. Well, one time an emergency room doctor stuck a needle in my tongue, injecting epinephrine. That seemed to stop the bleeding for a while. One time after a bout of bleeding and then a respite, my wife and I took a nice walk on a nice day down by the river. I was in a good mood. But later that day I was sitting at my computer and I sneezed. The bleeding started all over again.
Like I say, the bleeding would stop eventually, only to start up again. I had to stick out my tongue and use a thumb and finger to apply pressure to the wound for long periods of time until the bleeding would finally subside for a time. I swallowed one heck of a lot of blood in my sleep — and got blood all over my bedding and the bathroom sink, not to mention clothing.
However, much of my suffering, the bleeding notwithstanding, came from the effects of the treatment, chemotherapy. It made me weak and destroyed my immune system.
No one could seem to bring it back, that is until another oncologist on the advice of doctors at the University of San Francisco Hospital suggested she give me a high-dosage regimen of Prednisone. It worked. It jump started my immune system.
So nine to eight years ago or even less, I thought I was winding down my life.
So much has happened since then.
My wife, who I married when she was still 16 (a month shy of 17) died almost six years ago. Having never been to Europe except serving in Germany in the army, I have travelled to Spain twice in the last two years, and I have come some distance in learning Spanish — something I began years ago in college, but let slide. I have a better attitude at work because I appreciate being alive and well and being able to earn money, and just being able to live.
When I thought I was a goner, I would sometimes talk to my wife about things from my childhood, talking rapidly, as if I kept talking I would keep living. And once I had her drive my to a now abandoned cattle auction yard where I once sold a cow and calf. Long story but short version: when I was a teenager I had this idea I was going into the cattle business. I thought I would start with a white face heifer I bought from a rancher and go from there. She had a set of twins (thanks to the rancher’s bull), and then she had a second calf. But once I graduated from high school I was lost in life. I was not ready for college. I was not even ready for life. I got married. Sounds crazy, huh?
But we were together for almost 43 years. My wife died at 59.
And of course when you lose your spouse you can’t help but think, if only I had (yeah, you should tell your spouse how much you love her (or him, as the case may be) and do some things to demonstrate that.
And when you are healthy you take life for granted.
I sometimes think I am back to doing that now. But I know better. I lost my life partner and I thought I had lost or would shortly lose my own life.
If you have been just diagnosed with Waldenstrom’s all is not lost. Make the best of every day.
It ain’t over till it’s over.
And right now it almost seems as I might live out my expected life span after all. For the past several years I have been only going to my oncologist every six months, and my blood work always shows status quo. I still have the cancer but I am essentially in remission.
I’m not taking anything or anyone for granted. I’m trying to enjoy life every day.
Symptoms for WM vary. Not everyone will have the same ones or all of the same ones. You usually find out you have it because you had a blood test for something else. Left unchecked, WM can weaken functions in your body, cause you to have a stroke or other problems — all possibly leading to your demise of course. There is no cure, except to keep on living and enjoy life while you can, as everyone should.