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I’ll sleep when I’m dead…

Home/Uncategorized/I’ll sleep when I’m dead…

I’ll sleep when I’m dead…

I’m home from the hospital, well rested and no worse for wear–unless you count the seven or eight spots where nurses couldn’t get IVs started because I was so dehydrated.

As I was getting ready to email a myeloma friend and tell him to “be careful and take it easy,” I checked my own email and found a half dozen such suggestions for ME!

One kind, experienced former nurse emailed me this yesterday:

Hey buddy, the MM community needs your wisdom and wit. I feel like you are suddenly sprinting. Don’t forget this is a marathon.

Take a deep breath…Good advice. I should probably take it.

Here’s another helpful reader comment:

Spend less time on MM – believe me, it won’t go away. But try to occupy yourself less with support groups, writing about the disease, etc. It may help to distract you…

More good advice. And I do listen to my readers.

But here’s what another sympathetic reader who knows me all too well had to say:

I’m a type A person and a total nut that way. I’m going to tell you to rest because all the people in the know tell me that…

Of course I don’t do it. I subscribe to Warren Zevon’s motto: “I’ll sleep when I’m dead. So keep on like me, Space Cowboy”…

BINGO!  That from a high risk multiple myeloma patient who emails with me regularly. He understands that after almost five years–as I become refractory to Revlimid–that I, too, have become high risk.

So what else do we have in common, besides intellectual curiosity and an endless motor?

We can both hear our biological clocks ticking–just like a woman in her 40′s who desperately feels her fertility slipping away.

Sorry, but for me this IS A SPRINT.

Don’t you see? These books I’m writing, my columns, my blogs–and all of the patients I’m trying to help–this is my legacy.

I don’t have kids. And while I have tried to be a good husband, spent years teaching, had some interesting jobs and helped create some fun businesses, nothing has ever meant so much to me–or others–as what I’m doing now.

The first draft of my third book, New Myeloma Therapies from a Patient’s Perspective, just went to editing and should be available by Spring.

And I have already started books four and five, including one that I feel is vitally important. It will feature hundreds of sources and tips to help myeloma patients and their families find some much needed financial relief.

I don’t expect these books to make me any money. That’s not the point. After all, with only 20,000 new multiple myeloma patients diagnosed in the United States this year, the market is small. These titles certainly aren’t going to make the New York Times best sellers list!

No. The important thing is I am leaving behind a blueprint for how to become an informed patient.

The important thing is I’m leaving behind something to help my fellow myeloma patients and caregivers after I’m gone.

And what I don’t understand is why my readers don’t understand this.  You should all know me pretty well by now…

Tying to help future generations of cancer patients in only a few short years is an ambitious, overwhelming goal. Wouldn’t you be sprinting?

Thanks for the daily suggestions that I “slow down,” “take it easy” and/or “take a step back and don’t let myeloma define me.” I love my readers–and I hear you.

So I will make you a deal. I will slow down and work harder to take care of myself. That’s good advice. But in return, how about switching gears? How about helping to generate a cumulative “wind at my back” as we work together  to help our fellow survivors?

The reader comments and emails I receive are not only insightful, they’re significant.  Years and years of cumulative experience that can be invaluable to those who follow us.

That’s what I’m trying to do.  Record many of these helpful, hard earned tips in my growing “Patient’s Perspective” book series.

Generations of future multiple myeloma patients and caregivers are counting on us. You might even say their lives depend on it.

And I’m more than happy to help. Yes, even if working so hard cuts my already contracted life a bit shorter.

Because while I’m still around, this compulsion to help is the only thing that gets me up in the morning and helps keep me going–despite all of the discouragement, pain and discomfort.

We are in the middle of a grand experiment.  Together, we can help the next generation of multiple myeloma survivors.

Like I often say to the kind health care professionals who have become such an indispensable part of my life: “I can’t die yet–I’ve got too much to do!”

Time to get back to work! Feel good and keep smiling! Pat