More or…less?

Interesting debate going on in one of the Facebook support groups of which I am a member. Actually, there are a lot of interesting debates in this period…This particular one just happens to be my choice of the day…

In a nutshell, some group members wrote that the more they read about myeloma, the more they freaked out, even to the point of having panic attacks.

For me (and for other group members), it was the exact opposite: the less I knew, the more I was worried.

Between 1999 (when I was diagnosed with MGUS) and 2005 (when I was diagnosed with SMM), I didn’t know beans about any of this stuff. Well, that’s not entirely true…I had collected a few scattered “beans.” I simply didn’t know what to do with them. ūüėČ

Now, of course, I know A LOT about myeloma and a bunch of other related stuff, too…Yet I am much calmer and happier and serene than I was years ago. I think the reason is that I feel more in control. And I have also decided to enjoy my life as much as possible.¬†

And now, every time I read one of those terrible statistics about myeloma, I think of Harvard Prof. Stephen Jay Gould’s essay, “The Median isn’t the Message.” I firmly believe it’s worth re-reading from time to time:¬†http://goo.gl/Bq2XC

Oh dear…As usual, I digress! Let’s get back to the point now, to my question of the day:

Is it better to KNOW or…NOT to know…or to know LESS?¬†

Just curious. 

P.S. I wanted to add that I’m beginning to see the light at the end of the tunnel. The translation I’ve been sweating over for the past few weeks (seems like decades) has taken up a lot of my time and energy, but today I can safely say that I’m nearly done with the final editing. I hope to hand in the whole shebang by the middle of next week, before my deadline, that is. Then I can get back to my regular life…research…writing…paying more attention to my cats…

Can’t wait!

8 Comments

  1. Interesting question, one I’ve pondered a lot myself. I have MGUS, diagnosed a year ago. Of course I freaked out and spent hours reading everything I could get my hands on (this blog is still my fave). I participated in the Facebook group for a while, but slowly began to realize that I knew enough, was being monitored by competent specialists, and was only making myself anxious by continuing to read so much. I decided to focus on being positive, healthy and happy. I can’t say how I will feel if I progress, but for now, less is more.

  2. I think knowing all the possibilities has left me more anxious than not knowing. But, as time passes it leads me to acceptance and perspective. And perhaps that is the one positive thing that MGUS has give me–perspective.

  3. Hi Margaret, I read your blog everyday since I discovered it on my birthday last year at age 47. Iyou have been an wxcellent source or comfort, education. & mostly inspiration. I have quickly gotten control of my health and made some life changes. I am a highly trained and skilled Nurse and found that your blog helps really address many questions for a patient a on going progression. I am traveling to Europe in a week as result of reading some quotable and very open feelings you have shared. Thank you,
    Marina

  4. Hi Margaret,
    I was diagnosed with MM 8 years ago. I have been through a range of feelings about how much I wanted to know. When I was first diagnosed with bone lesions at the age of 34, I really didn’t want to read anything about myeloma, except to know what it was. I didn’t want to know what my risk of having more chemo was, nor my risk of dying within 5 years. I wanted to focus all of my energy on getting well (by trusting that my excellent oncologist and nursing staff knew how best to treat me), without any bad news interfering. It was an active denial process. The other thing was that I was physically and emotionally exhausted, and I didn’t really have the energy to seek this information out.
    Since I had 4 months of VAD and an autologous SCT in 2004, I have been in remission. During this phase of my disease I have found information has empowered me and allowed me to take more control of my own treatment. I remember reading Stephen Jay Gould’s article and taking a lot of comfort from it. Being young might well have been in my favour, as might be a whole bunch of other things that meant I was not the average MM patient – nobody is. The stats are not about you.
    I guess I can understand both points of view, and wouldn’t try to persuade anybody to change their mind, because I have been on both sides of the argument. Both positions have served me well though, and given me the strength I need to face the challenges of being a MM patient.

  5. I’m a caregiver, not a patient, but it has always been my MO to get more info before I make a decision… like getting cataract surgery but pushing my opthalmologist to let me watch him operate before I made my final decision (he’s a professor in that department at University of FL) and after seeing the surgery being very calm about having it done.

    There are statistics about MM, but it’s like getting statistics about men wearing suit coats… almost every case has to be done by a tailor/doctor.

    Some people simply cannot digest more information after getting the diagnosis until they have had time to get over being in denial. My daughter simply didn’t want to know anything more than she had to know in order to care for her husband – she was already in information overload. But in time, being aware she was in for a long haul, she began to be more receptive. I think everyone has their own timeline for ‘details’ and it is important for caregiver/patient teams to respect each other’s level of acceptance.

  6. I just wrote a paragraph which got erased when I made a mistake in the send code!
    Your blog has been invaluable to me in the last year since to my HUGE surprise I was diagnosed with SMM. I knew NOTHING about it, and was bowled over by the prognostic statistics.

    The more I read, the more control I begin to feel. And it was so encouraging to become aware of things I could do to improve the outlook.
    Eg – reading TAB’s ongoing story, and info on supplements.
    My ‘numbers’ are stable, and the curcumin, I believe, is responsible for eliminating long term back pain, at the very least! And so far I haven’t turned orange!

    Margaret, I so appreciate the work you do in monitoring MM research developments and translating to digestible nuggets as well as providing links to the research. You deserve a medal, or at least a huge vote of thanks.
    Brava!

    So my vote is for more.
    Ps. I also enjoy the non MM forays into, travel, humor, photography, cats…

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