The WALTHER REPORT
By Tony Walther
The thing about Waldenstrom’s macroglobulinemia (WM) cancer is that you have it long before you know it and one usually doesn’t find out about it, except by accident.
My feet tingled. Yes, I was tired, and I did have a rather rapid weight loss, but I attributed the second two symptoms to the fact I was getting a lot of exercise.
But the tingling feet bothered me. At first I thought maybe it was frost bite. I had been out in the cold and snow in the mountains. But that did not really seem likely, since when I noticed the tingling it was some time since I had been in the snow. Then I thought it was the non-carpeted floor in parts of the house my wife and I had just moved into. But that did not seem likely either, since she was not experiencing a problem.
I went to my primary care doctor, the first time I had ever seen him, and he sent me to a foot doctor, but also ordered some blood tests. The foot doctor did not find anything wrong. But I think after I got the first blood tests back, someone somewhere was suspicious. They sent me for another test and shortly after that I was sent to an oncologist. I got a phone call from someone, I don’t remember who, before my second blood test and got the strong hint that cancer was suspected. That’s when my whole world changed. Earlier, when I had noticed my rapid weight loss, I had actually joked to my wife, “maybe I have cancer.” You have to ask yourself, why would someone joke about such a thing? I don’t know, believe me.
The oncologist confirmed that I had cancer. Then he informed me it was a rare and incurable, but treatable kind, WM.
One of the main giveaways in the detection was the fact that my blood was way too thick (I’m using laymen’s terms).
I’m just going off the top of my head here. I don’t have all the numbers and facts before me (something I still promise to get organized so I can write more intelligently about the subject).
But I will tell you: concurrent with all of this, I had developed a sore on the middle part and front of my upper tongue. Other than it was a little bothersome, I didn’t worry much about that. I don’t think I had been alerted to the possibility of cancer just yet, when we were having a barbecue out in the back yard. I remember, besides my wife, my oldest daughter and her family were there. I bit down onto a piece of thick, juicy, good-tasting steak, and at the same time, bit my tongue.
I got kidded a little about that. But, it started to bleed and would not stop. My wife took me to the emergency room and there I waited with a wash cloth, now soaked with blood, in my mouth. I think I waited for some time.
Over the next many weeks, this scene was repeated over and over. Usually in the middle of the night, I would go to the emergency room, bleed all over the place, often wait a long time, and finally it would stop bleeding on its own. I would be sent home, only to return another night (or day).
I even showed up to my first oncology appointment with a bloody rag in my mouth.
At night, I would wake up with a mouth and throat full of thick blood. I swallowed a lot of it, and how I kept from choking on the blood, I do not know. The worst part of it all is that no one seemed to know what to do about it.
On one visit to the emergency room, a doctor did give me a shot of epinephrine directly into my tongue and it seemed to stop the bleeding for a time, but it came back (and I am not sure that was a good thing to do, from what I have heard or read since, but I don’t know).
Eventually, a specialist I went to removed the nodule on my tongue, took a biopsy, and found it to be non-cancerous. He stitched up his work, but eventually it broke loose and the bleeding resumed. It would stop for awhile and then start again. He finally demonstrated to me the correct way to stop it. It’s difficult and really only I could do it for myself. I had to put pressure on my tongue with a finger above and thumb below, hard pressure, and hold it for at least 15 minutes, sometimes much more (once for at least two hours, and I was in a hospital bed at the time). Sometimes this worked and sometimes it didn’t (it is a good first aid technique, though).
Eventually, my oncologist did come to the rescue, by giving me IVs while I was in the hospital with something called blood factor 8. After that, I had no more problem with the tongue bleeding. I never did find out or could get anyone to say how the tongue problem was connected with my WM, but certainly it was not just a strange coincidence (now was it?). The WM literature does speak of mouth and/or gum bleeding.
I did learn this, though: It would be possible to bleed to death right there in the emergency room.