Still alive and kicking with Waldenstrom’s…

Have you or someone near you been diagnosed with Waldenstrom’s Macroglobulinemia (WM)?

Take it from me, I have it, and it is not a death sentence. I mean we all face the fact that we will not live forever and we don’t really know when our time will be up.

But when I was diagnosed back in the spring of 2007, either through a poor presentation by my then oncologist or by my own misinterpretation (maybe a little of both), I pretty much thought I was a goner. I thought the best I could even hope for was maybe five more years on the outside, and actually I went through a spell where I felt I might not last the week, at any given point in time. That was primarily the result of nerves and the side effects and after effects of chemotherapy.

Well it’s been eight years and I am 65 and darn near 66 (my birthday being in August) and I feel nearly as healthy now as a I did decades ago, and I have always been in good health, the WM diagnosis notwithstanding.

(My mother died a year ago at the age of 103. At one point I forlornly observed to her that she might outlive me. Seemingly without batting an eyelash her immediate rejoinder was “yup”. That was just mom, you would have had to known her. I’m the baby of the family and I knew even then that she cared and that she loved me, and I certainly miss her.)

I went through one round of chemotherapy and then it took a long time for me to get my immune system up and running. There were several multiple-week hospital stays. That whole ordeal was unpleasant to say the least. And if you saw some of the photos taken of me back then you would see that I looked older than I do now.

Read up and understand chemotherapy. My advice is don’t be too quick to choose it or a certain kind of it before you know some facts. I think I suffered more or have suffered more to date from the treatment than the disease — but apparently I had to have that chemo or things would have gotten out of hand.

The unpleasantness lasted for a couple of years at least. I really have not kept good track of that. I try not to remember too much. But even then I was no invalid and had many good days.

WM does not affect everyone the same way. My major side effect or symptom of WM was uncontrolled bleeding from my tongue. I also developed a numbness in my feet (neuropathy), and still have it, but it is not so bad that I cannot walk. I wrote about all that in some of my other posts. I think you can call up those posts by clicking onto WM on the right side of this text under categories.

I think I am correct in saying that WM itself does not kill you. But it makes you more susceptible to other problems, such as heart disease.

It would probably be a good idea to read up as much as you can about this rare form of cancer. Only about one thousand people per year are diagnosed with it in the United States, or at least that was the last statistic I read.

One problem you may encounter unless you are fortunate enough to be near some major hospital that has doctors who are knowledgeable about WM is that most doctors know little to nothing about it. Even oncologists often know little to nothing about it.

For the benefit of those readers who have read some of my past posts on me and my WM I want to assure you that I am still alive and well — feel great. I still work full-time as an over-the-road truck driver.

And I travelled to Spain on vacation last year and had a great time.

And for anyone just diagnosed I know how it is. I was shook up to say the least. But then I moved on…

6 Responses to Still alive and kicking with Waldenstrom’s…

  1. Judy Walton says:

    Hi Tony, I’m glad I found your Blog I’m going to read it to my husband whom has just started treatment at 60 years of age I saw you have had it for 8 years and seem like your living your life so I’m picking your story to read.

    Thanks Judy Walton

  2. Donald B Ross says:

    Don Ross
    I was diagnosed with high blood protein 25 years ago
    8 years ago the diagnosis changed to WM and they started chemo
    and accomplished nothing other than ruining my immune system
    6 months ago they gave up on chemo.
    I am 75 years old now they tell me If I watch myself I may only
    live another 20 years.
    watch that chemo it came close to killing me

    thank you live long and prosper

  3. I was diagnosed with high protein in my blood 25 years ago.
    8 years ago they started chemo diagnosed WM
    They could not control it
    My immunity has been compromised
    But they still say if I’M CAREFULL I still have 20 years
    I’m 75 years old
    Good luck


  4. I ve had WM for 25 years .been treated for last 9.

  5. Nasser says:

    My dad was diagnosed Jan 2017 the he is 77 now and he finished his chemo. and cancer free since last June. he is doing very well and the dr told us there are many treatment options for it when it comes back. but he is living his life here in Australia after I brought him from Syria. That was the best thing happened to him coming her to get the best treatment and care option.
    When I am down I always read your blog it makes me feel much better thank you for sharing your story wit us

  6. Julian Barajas says:

    Hi Tony,
    5/13/17. I currently have waldenstrom. I am 49 and still going through chemo. I was diagnose on 2/27/17.
    You are so correct, biggest battle. I been in hospital 5 different occasion and was a Code Blue on 4/11/17. I refuse to give up!!!
    This damn cancer has affected my kidneys. I currently have 31% function.
    Thank you for the good read.
    Never give up.
    Julian Barajas

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