CORRECTION: In my original version of this and then again in my previously updated version I made a goof and said I was diagnosed with Waldenstrom’s in 1987. I meant 2007 (if I had it then, I did not know it yet).
UPDATE: It had been well over a year since I had last seen an oncologist/hematologist when I visited one yesterday. I had seen her previously and then had jumped to another one when I was afraid she was pushing me gently toward more chemotherapy (although a milder form than my original) when I thought I was not ready for that. But then the other oncologist disappeared due to financial troubles at the cancer center where he worked (Yikes, I didn’t mean he did anything, it was just that the center he worked for apparently had business problems — and the gossip is that the doctors who owned it may have been good at medicine but not so good at business). So I have gone back to my present oncologist and she thinks everything looks stable and there is no need to see me again until six months, unless I detect some drastic change, such as rapid weight loss or heavy night sweats as I had at one time (I still get them, but not so heavy and only occasionally). She reminded me that the nature of Waldenstrom’s is that it is a slow-moving form of cancer — so life goes on as normal (for now). One of the problems of having a rare form of cancer, such as Waldenstrom’s, is that not many doctors have any or at least much experience with it. I am not in a position financial or otherwise in which I would or could travel a far distance to an expert in the field. But my current doctor saw fit in the past to seek advice from the University of San Francisco experts and that helped me (I have referred to that in previous blog posts on this subject, and you can look at those by clicking onto WM at the right side of this blog page). And she seems quite concerned and knowledgable about my cancer in general and is reassuring — that is worth a lot — and she is right here , not miles away. I have seen three oncologists since I was diagnosed in 2007 and each one did something positive for me and I appreciate it. One thing to keep in mind, if you have been just diagnosed with this strange condition, it may not be any more of a death sentence than you already had the day you were born. Most of or a lot of us get something in the end that brings us down, although some people do live to a ripe old age and then just go to sleep. When I first was told I had Waldenstrom’s and that it was incurable and was given some statistics about life expectancy I thought I was a dead man. But life, although interrupted by chemo and then a prolonged period of waiting for my immune system to revive, has gone on pretty much as normal — I’m still working full time at almost 62 now and at the moment feel as healthy as I did at a much younger age (and I have always been quite healthy). I’m just trying to go with it while it lasts. What follows is a re-posting of a post I did a few days ago:
I steadily get hits on posts I have done on Waldenstrom’s Macroglobulinemia — just call it WM. That is the rare form of cancer I have. I have not done a new post on the subject in probably more than a year (guess I could look that up).
But I have been doing fine and have a full-time job. I was diagnosed in the spring of 2007. Things were going so well for me. I had finally managed to latch onto a better paying job and my wife and I purchased a house (well you know, started making payments). The house is gone, and my wife has passed away. But I survived.
I went through six one-week rounds of chemo over a six-month period and tried to go back to work too soon. I was in and out of the hospital because the chemo all but destroyed my immune system — and I’ll stop right here to say that it was the chemo that caused me all, well most, of the problems and pain (but they tell me I had to have it). The only other thing that caused me a problem, and was part of the Waldenstrom’s itself, was uncontrolled bleeding of my tongue. But I got an infusion of a blood factor that solved that problem. I wrote quite a bit about that. In fact you can call up all of my posts on WM by clicking onto the subject WM at the right margin of this page.
The only reason I am doing this post is to let people know who have WM or especially those who have just been diagnosed that apparently this thing, although not curable, is survivable more than you might think. I know the initial info I got was a little ambiguous, to say the least. I was led to believe I had maybe five years if I was lucky, and I did not know when the clock had started ticking, because you usually or are likely to have this thing quite some time before you are ever diagnosed. Well, actually I guess my five years are not up from actual diagnosis, but the last I was told I was in remission, although the doctor did not prefer to use that word. You might say I am in a holding pattern.
I have not seen an oncologist for more than a year, partly because of a mix up or confusion at the cancer center I had last gone to. The oncologist I was seeing parted ways with them over a pay dispute. I also lost confidence in that center.
But I am scheduled to go back to a previous oncologist I had seen and whom I was fairly well satisfied with and I won’t go any farther on that.
I encourage you to check out my other blog posts on the subject by clicking WM at the right, as I mentioned. But I’ll try to quickly as I can summarize what happened to me:
The symptoms are different in different people, I need to mention first. But for me I began to notice a tingling in my feet, kind of like when your foot goes to sleep or when it gets cold. I went to see my family doctor and also a foot specialist. Neither one of them could detect anything wrong, but when my blood tests came back, my family doctor referred me to a hematologist/oncologist.
Coinciding with all of this, I developed something like a cold sore on the middle of the upper and front part of my tongue. I accidentally bit into it during a family barbecue. My tongue began bleeding uncontrollably. I went to the emergency room, something I had to do frequently for the next several months. They never really did anything for it (until eventually my oncologist did that infusion I mentioned). As I said, I blogged about that and you will find it under my WM category.
A doctor’s office person kind of let it slip when she called me that I may have some form of cancer. I knew I was in trouble and grown man that I am, I went to my room and cried briefly and then composed myself. Thank goodness I still had my wife then (she has since passed away).
The oncologist gave me the diagnosis. I may have not fully comprehended everything he said, but as far as I was concerned I was a dead man walking — maybe I would die any day.
I went through the chemo, which in and of itself was not so bad (okay not so good either), but like I said, it destroyed my immune system and that put me in the hospital several times.
I also had to undergo several bone marrow biopsies. Done with skill they are not so painful, except for one part that should only last less than a minute. But not everyone does them with skill — at least that was my conclusion.
I was off work for about two years.
What kept me out so long was that despite repeated injections with various things (I don’t recall what they called them) my white blood cell count stayed way too low. But finally, thanks to the oncologist I am scheduled to see next Monday and thanks to the advice she got from the University of San Francisco Medical Center, after being put on a brief high-dosage regime of Prednisone, my immune system came back — it gave it a jump start, and I have had no problem in that regard since. But I caution, just as the symptoms are not the same for everyone, neither are the treatments.
While I lost my higher paying job in the process, I went back to another job and am extremely happy to be working. And I feel as good at 62 (almost; I’m 61 now) as I did at maybe 52 or even 42 — 32 or 22, well maybe not so much.
I’ll see what the oncologist has to say next Monday.
My wife had encouraged me to read up on WM as much as I could. I did a little, but then lost interest. I just wanted to get on with my life, and for the time I have been able to do just that. But I imagine knowing as much as one can about it if you have it would be better. I’m just trying to enjoy my apparent health right now.
I see I have the categories listed two ways: Waldenstrom’s and WM. Hopefully all my posts on the subject are listed under either one.