Have WM? Don’t worry, be happy….

August 27, 2008

(Copyright 2008)


By Tony Walther

This was going to be a blog about the latest developments in my Waldenstrom’s macroglobulinemia (WM), a form of cancer, and maybe I will say some things about it, but really I’m just blogging now to put off other things I really should be doing.

(For a summer of fires update, please see the P.S. at the bottom of this blog.)

But, okay, I will say something about my WM. Went to my oncologist yesterday and found out that despite what I had been told many weeks ago by a specialist in San Francisco, I am not in remission. Actually, I don’t think he said unequivocally that I was in remission, but he suggested as much. But I already knew before yesterday that such was not the case. My oncologist here at home told me my cancer was still doing its thing several weeks ago, and again yesterday.

The good news was that things seem to be fairly stable at the moment, although my protein level in the blood is starting to climb again, if ever so slightly. The bad news is that I cannot go back to work and it is not looking as though I ever will. I also may be looking at another round of chemotherapy in the near future.

Not being able to return to work would not be so bad if I had a lot of money, but you know, I don’t. I was really holding out hope that I could go back to work and maybe build up a little nest egg. I am 59 now. So anyone reading this, especially if you are younger, please, for your own sake and for the sake of your family, if you have one, prepare for the future, for that future can come now.

It’s been about a year and two months since I was diagnosed with WM, a non-curable form of non-Hodgkin’s lymphoma. It’s slow moving, indolent they like to say, but the problem is by the time one is diagnosed, one never really knows how long one has had it (I use “one” to avoid that awkward he or she thing and now I have to explain it and I might as well have said he or she or just he because that is often gender neutral anyway).

You hear things like, your life expectancy once you’ve been diagnosed is five years, maybe even ten years, could be more, could be less than all that, because for one reason even the doctors don’t know how long you’ve had it.

So, anyway, the oncologist tells my wife as we are leaving (I’m sitting a ways away in the waiting room) to enjoy the time we have left and don’t worry. While that is easier said than done, I wholeheartedly agree with that advice (what would be the point in doing anything else?).

I intend to write a more detailed blog about my WM soon (as in today or tomorrow). This I would think would be of general interest but also of special interest to anyone who has WM or anyone whose family member has it. It is a rare form of cancer, so unfortunately there has not been a lot of research on it, at least not compared to the more prevalent forms of cancer.

This is my second summer with WM. I went through six, one-week, sessions of chemotherapy and many hospital stays, mostly due to a weak immune system, and worst of all early on I had a bout with uncontrollable bleeding of the tongue, finally put down with an infusion of factor 8 in my blood. When my immune system was at its worst, I had terrible mouth sores.

So now, I do not have any sores and little to no pain or discomfort – oh, except for the neuropathy or nerve damage in my feet, which was actually my first symptom. So if you ever get that, make sure you get a blood test, you might have WM and the sooner you jump on it, the better chance you have of prolonging your life. I have read that many times when one is diagnosed with WM nothing is done because it is in its early stages. I guess that can be unsettling too, to know you have a deadly disease, but nothing can be done about it at the time.

I should add that I suffer from some anxiety and fatigue at times, which my oncologist tells me is expected with my disease.

I always know my blogs have gone on long enough when I get to the second page, so I’ll try to wrap things up.

As I said, I plan to write more about my WM with some more details or tidbits that might be of interest, especially to those with it or affected by it.

And I should always add this piece of advice, always get a second opinion and make sure you are comfortable with your oncologist from the get go.

For now, don’t worry, be happy.

P.S. This certainly has been the summer of fire here in Northern California. It all started about the first day of summer and went on for more than a month. Much of the time here in my town at the northern end of the Sacramento Valley we were nearly surrounded by fire, most of it burning in mountain forests and in brush lands. At times it looked like it would spread into the city limits, and I guess it did a little. But now that the fires are spent, for the most part, we had a close call yesterday. A fire broke out in some brush lands within the city limits and jumped a main road and spread to more brush lands and caused the evacuation of hundreds from homes and businesses and widespread power outages. We did not have to evacuate and suffered no power outage except for a split second during Hillary’s speech. The cause of the fires in the wild lands earlier was predominantly so-called dry lightening strikes. The cause of yesterday’s fire (and come to think of it there was another similar fire this morning) in under investigation, but I suspect it has something to do with transients who live in our urban wild lands… don’t know really.