WordPress, the blog service that makes this site possible, tells me that among my most frequently called up topics is Waldenström’s Macroglobulinemia, WM, a non-Hodgkins lymphoma.
It’s been quite awhile since I have done a post on this so I figured it’s about time I did another.
So 2012 is almost history as I write this and it’s been another year of survival for me since being diagnosed with WM, an incurable cancer (they tell me), in 2007.
In fact, I have been doing great. Chemo over a six-month period was not fun and then trying to get my immune system back over the course of a year or so was touchy (the chemo having nearly destroyed it along with cancer cells) and those bone marrow biopsies were not fun either. (See more on immune system recovery at the very end of this post.)
WM affects different people in different ways and the symptoms if there are any noticeable ones are not the same for everyone.
Before I say how it affected me I want to say right here and now that since recovering not from WM but from the treatment, I have felt better and stronger in some respects than I felt in much of my life preceding. Part of it may just be that I am so grateful that I am alive and able to get around and work and enjoy life and that I no longer take good health for granted. But I still don’t eat the things I should much of the time. My long-distance truck driver lifestyle gets in the way. But I was led to believe, partly by my own misunderstanding, perhaps, and maybe in the way it was put to me, that I only had about five years left. Really. Well, I made it through year five anyway and there is no indication that I am going down hill. In fact I only see my oncologist about once every six months now and I am not on any prescribed medicine. But my blood tests show I still have WM. I have too much protean in my blood, however, my blood viscosity has been staying at a normal level. It had been way too thick previously.
While I did some research on WM initially, I did not stick with it, and I am not going to go over all that stuff in this post. You can find all that yourself via Google and other sources.
But I will recap what happened to me (I think a lot of the traffic on this site is from people who have just been informed they have WM or their loved ones):
Oh, and before that, I will add that WM is rare, about 1,500 diagnoses per year in the U.S.
And as I think I already said, not everyone will have the same symptoms and, in fact, many experience no symptoms and it just comes up on a routine blood test. But even if you don’t know you have it, it can cause things to happen to you and lead to death.
So what happened to me is that I had finally late in my working life landed a great paying truck driving job and was feeling great. But then I began to have tingling in my toes. And about this time I noticed a strange sore on the upper, front part of my tongue. Then we had a backyard barbecue and I bit into a big thick juicy steak but also my tongue. It began to bleed and I could not stop it. I went to the emergency room and they could do nothing, really. It did eventually subside.
(And remember, the symptoms are not always the same.)
I have to leave out some details here because it just takes up too much space, but I need to tell you that over several months I had these bleeding episodes and I must have swallowed gallons of blood in my sleep. Finally my oncologist ordered a transfusion of a blood factor into my system and that seemed to stop it all. However, I got a scare recently when I had a dental implant done. It seems that the deep digging they did in my mouth caused a resurgence of uncontrolled bleeding but this time from my gum. But it stopped within 24 hours and no trouble since. And I have had other dental work done.
Over the course of a year I was in and out of the hospital. Once I got so dehydrated from bleeding that I fainted and I actually thought I was in my death throes. I mean everything went blurry but I could still hear voices. I still had some consciousness.
I wanted to protect my good-paying job so I ended up going back to work too early. I got terribly sick while tramping around in deep snow installing snow chains on a truck. I was put back in the hospital. My immune system had not yet recovered enough.
Lost that job. Now I am back at one that pays much less for more work. But I am happy about it nonetheless. I am living and I have a job (no minor deal in this economy) and I am self-sufficient.
I have an appointment with my oncologist next week. I don’t expect any real news out of that, but if there is I’ll post something.
Several people have emailed me and some have told me how they or a loved one with WM are long-time survivors of WM. I hope I continue to be one.
Not sure what this has to do with it, but my mom is 102. I want to keep up with her.
While I certainly do not want to be seen as offering medical advice, I do want to note this: from what I have read there seems to be two general approaches to WM treatment, aggressive and not so much (pardon the modern slang). I read somewhere a doctor advising to try not to disturb the patient’s quality of life any more than is necessary. You see, not a lot is known about this form of cancer. So it is often a guess, albeit hopefully an educated one, as to what steps are appropriate in treatment. Of course you really need to go by what the doctors say, but it would not hurt to read up on things such as the different types of chemo. I had a fairly harsh variety I think, but I understand there are milder forms now. I hope all of this has helped.
Thought of something else. I have gone through three oncologists and left and gone back to one of them. But each one of them did something positive for me. The first one had the worst bedside manner but he saved my life (so thanks). The second got my immune system jump started after consulting with some experts in the SF Bay area. Up to that point the standard things did not work. I took a heavy dosage of Prednisone for about a week. It worked. You are always feeling up and eat like crazy. The third was easy going and gave me confidence. And now I am back to the second one. I live in a relatively rural area, so it is difficult to find doctors knowledgeable about this rare form of cancer here, but my present oncologist is willing to consult the experts — and it did work last time.