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Myeloma is different in every patient–and every patient is different

Home/About Pat, Inspirational, Tips/Myeloma is different in every patient–and every patient is different

Myeloma is different in every patient–and every patient is different

I haven’t been having much fun lately.  Its not that I’m down or depressed; just busy and a bit overwhelmed with our move and recent myeloma related hiccups.  Regular readers may have noticed.  Where are those fun, tongue-and-cheek posts that Pat used to run?

A recent email exchange reminded me not to take things too seriously.  I was reading an email from Danny Parker.  You remember Danny?  Our lifestyle columnist took a medical leave of absence to tend to the worse case of shingles I’ve ever seen late last year.

Danny pays attention to detail.  He’s an engineer and author.  Sometimes in his spare time he investigates clinical trial results and  reads detailed reports having to do with nutrition and exercise.  Danny emailed me, concerned about a few of his numbers; obscure tests and values I’ve never even seen before.  I’m sure susierose would understand what they’re measuring, but I don’t.  Another good friend and multiple myeloma survivor, Nick Van Dyke, pays a lot of attention to his numbers, too.

By any normal measure, both Danny and Nick are currently myeloma free.  Nick learned a recent scare was most likely a false alarm.  Danny’s test results may or may not show his myeloma is just beginning to become active again; his specialist in California says it’s too early to worry.

I can see following a few numbers in anticipation of a possible therapy change (me), but if I’m doing well I’ll admit it; I barely pay attention.  I worry about your numbers instead.

But it’s different for my two friends.  Nick is convinced he’s cured–and he may well be.  So far, so good!  God forbid if Nick’s myeloma were to return it wouldn’t be life threatening, but it would shatter his carefully constructed belief system.

Danny is a high risk patient.  I’m sure he’s concerned that once his myeloma returns, it may be difficult to control.

I found myself giving advice to Danny to lighten up and not worry so much.  Me, giving advice like that?  If you look up “hypocrite” in the dictionary, you might find that as definition number two!  I’m the one that needs to slow down and make time to have some fun and SMILE!

Danny returned my email, graciously thanking me for my advice.  He reminded me that he’s “a numbers guy” and that’s just the way he’s wired.  Conversely, I’m into the creativity and craft of it all.  Weaving one post into another.  How things look on the page.  Writing artfully, yet keeping things simple so newly diagnosed patients can follow along.  I could use an editor, but I work hard to try and make my writing seem like I have one!

We’re all different.  Our myeloma is different.  The way we live with our relentless, insidious cancer  is different.  Insidious is the perfect word for it.  The definition of this adjective:” proceeding in a gradual, subtle way, but with harmful effects.”  Sound familiar?

I’ve learned so much watching how dear friends like Danny, Nick and dozens of others deal with their myeloma.  I can best describe it as “grace under fire.”  Waiting, watching; never sure what the next test results will foretell.

820Is my new pomalidomide therapy working?  I won’t know for several weeks.  I have a choice.  I can sit around, fret and worry about it, or I can get out, have some fun and LIVE!  Maybe Pattie, Finnegan and I will run into you on the beach this weekend.

Feel good and keep smiling!  Pat