Life goes on with cancer….

(copyright)

The WALTHER REPORT

By Tony Walther

It’s about two days after I was told that apparently the chemo I had over the past year did not do the job it was supposed to do on my cancer. In fact, it may have actually caused me a problem that I did not have before, which is not to say that it did not save my life for the time being. I don’t know.

And that’s really the whole problem. I don’t know. I changed oncologists because the first one was never terribly communicative and it finally got to the point where he quit communicating with me or berated me for not knowing something he claimed (and maybe did) tell me at one time or another.

I wrote this once before. But I say again:

When you are diagnosed with some life threatening disease or condition, get a second opinion and learn as much as you can yourself. Now, of course, in the end, you have to trust most of the treatment to doctors, but at least you know what is going on and can maybe spot something that may be wrong or not to your liking.

Study up on your disease and ask your doctor or doctors questions, lots of questions. If they can’t answer them or seem resistant, maybe you need better doctors. In my opinion, doctors have no right to refuse or discourage their patients from being inquisitive. Of course it is your responsibility to listen to the doctor and to learn on your own a well, so you do not waste his or her time or the time they need to devote to others.

Doctors and all in the medical profession are only human and you soon find out you are not the only one on their mind. They get in a hurry and sometimes they make mistakes or misjudgments. And I am not accusing anyone of anything. I’m just reminding everyone that as skillful and learned as these people may be, they are human and not infallible.

So now I am in super limbo. I don’t know where I stand and don’t know how to proceed with a life that could go on for a long time, or not.

Much of what I have advised here I did not totally practice myself. I have learned some of this the hard way. I was so devastated when I got my first diagnosis somewhat over a year ago, that I just kind of blindly went through the motions and did what I was told. My wife has done more research on my disease than I, much, much more.

As I mentioned in my previous post, I have Waldenstrom’s macroglobulinemia or WM for short.

It’s treatable, but incurable.

You’re probably thinking, well, so how long did they say your life span will be? They haven’t directly. And I’m not going into it now. I have to do more of my own research anyway. But I am supposed to get more information about my current condition in an appointment next week.

And before I forget, I received several comments and e-mails from total strangers about my WM and they were reassuring. I thanked the authors of those messages, but I want to thank them again and let anyone know that if they get into a similar predicament, there is help, hope, and inspiration out there…..

– I live in the northern end of the Sacramento Valley of California. In a recent post I said that the smoke from the fires was not so bad for the time being – it’s back, the smoke, big time. It’s even getting kind of scary. While I don’t believe we are in any danger from the flames here, that smoke is getting intense. All that we have breathed in over the past several weeks can’t be good. For those who have lung or breathing problems already, it is especially bad.

And when you’re suffering from fear of the unknown as I am, this smoke just seems to magnify the feeling of doom (and since I first wrote this, weather conditions have lifted some of the smoke, but it’s kind of a minute-to-minute situation. And the fires are still burning).

Meanwhile, I still have my loving wife and my family and my oldest daughter is coming to visit today. Life goes on.

Postscript:

I want to make it clear that I have appreciated all of the medical help that I have received thus far, all the way from the folks who tidy up the hospital rooms to the nurses to the doctors. While I mentioned that I changed oncologists, I did not mean to suggest anything other than at the time I felt more comfortable doing that.

4 Responses to Life goes on with cancer….

  1. Joanne says:

    Tony –

    By now, you’ve probably been told about the IWMF, for those with Waldenstrom’s. Check it out online: http://www.iwmf.com. So much info and support, and there’s a talklist with a LOT of members offering advice, resources, etc. Many have had WM for decades, literally.

    Also, there’s a GREAT oncologist in Monterey – Dr. Nancy Rubin – who has other WM patients.

    Good luck!

    – Joanne

  2. tonywalther says:

    Thanks very much!

  3. Sue says:

    My husband has just been diagnosed with WM and is in the “watch and wait” stage. Only others with this disease can understand how strange it is to be told you have cancer but the experts want you to wait and then treat the symptoms as they worsen.

    Like your wife I have been studying this disease and, after first learning everything possible on multiple myeloma (his original diagnosis), I am satisfied that the doctor is right, treatment would be worse than the disease right now. Our big problem is that the oncologist has no personality and actively resents my presence at the appointments and my asking for copies of all tests, etc. As this disease progresses (IF it progresses, this is a strange disease and no two cases seem to be alike) we’ll have to find another doctor that can spend two minutes with a patient and will actually answer questions.

    The hardest part is waiting. It IS a sense of doom and life will never be the same. Other people that get a diagnosis of cancer go into high speed actively fighting and working towards a cure. It’s hard to even decide to tell anyone about it – no one has ever heard of WM and no one really believes that you’re just going to wait six months and repeat the tests.

    I also found that the IWMF is invaluable. It has the most up to date info on treatments and gives you the best understanding of how to cope with this disease. I have no advice to offer – we’re really just starting this journey – I just wanted to let you know that you’re not alone in finding the doctors brusk and not particularly interested in answering questions.

  4. tonywalther says:

    Knowing that you’re not alone in all of this is certainly a comfort. Again, thanks to all for your comments.

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