The Real Slim Shady & Multiple Myeloma

May I have your attention please?

May I have your attention please?

Will the real Slim Shady please stand up?

I repeat, will the real Slim Shady please stand up?

We're gonna have a problem here..

The request at the gala on Saturday night seemed simple enough....."Will everyone with Multiple Myeloma please stand up?" Hmmmm, I wonder if I should stand up, I pondered, as the words from Eminmen's "The Real Slim Shady" crept into my head.  According to my OSU medical record, I have Primary Amyloidosis diagnosed 3/11/2013, I have Multiple Myeloma diagnosed 3/11/2013 and I have Smoldering Multiple Myeloma diagnosed 5/11/2013.

According to Dr. Gertz at the Mayo Clinic, I "do not meet their criteria for Smoldering Multiple Myeloma."  Notice he didn't say that I don't have it.  I've watched several webcasts and videos from The International Myeloma Foundation in which they will have physicians with different perspectives review a set of diagnostic information and discuss what treatment is warranted.  I call these the myeloma battle of the bands.  Mayo is always on the conservative end of the spectrum--don't treat, cost doesn't warrant the outcome improvement, etc.  (Meanwhile, Antonio Palumbo, MD in Italy is almost always advocating to treat.  Those impulsive Italians!)  

So, when Dr. Gertz says I don't meet their criteria, I take it with a grain of salt, knowing that Mayo is very conservative.  It seems there's not a lot of clear cut, agreed upon criteria that separates Primary Amyloidosis (AL), Smoldering Multiple Myeloma (SMM) and Multiple Myeloma (MM).  At the point I started to get fixated on labeling what I have, Dr. Efebera explained that the name doesn't really matter.  She will look at all the clinical information available to her and develop the most effective treatment plan for me, not based on the combination of letters for my disease.

I trust her expertise and judgement and, in theory, her approach sounds great.  The problem with it is the difference in prognosis for someone with the different combinations of the alphabet soup--AL, AL with SMM, AL with MM.  She told me I'm "in a gray area" between AL and AL with SMM.  

Just this week I saw a study from Mayo that said AL patients with greater than 10% bone marrow plasma cells really have AL with MM.  Well, what do you know, my aspirate sample (the liquidy part of the marrow) was 7% but the core sample (from the solid piece of bone marrow) was smack dab on 10%.  And, according to Dr. Efebera, the core sample is the more accurate measurement.  Did the pathologist round up or round down?

I recently read an article in the New York Times entitled "How Long Have I Got Left?"  It chronicles the quest to get a definitive life expectancy figure by a Neurosurgical resident recently diagnosed with lung cancer.

These statements really captured many of my feelings as I've researched my disease and prognosis--

Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely.

But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer. 

What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. 

The writer describes his quest for a life expectancy number.  But before I can even get to a number, I need a name and there's not a lot of consensus in the medical community about the name of my disease, my unique combination of letters.

I know that one of the spiritual lessons from this journey has been trust.  God brings that message of trust before me on a regular occurrence...bordering on annoying almost (sorry, God, but I call it like I see it.)  This mystery about the name of what I have, much less the amount of time that diagnosis is expected to afford me, is just another opportunity to trust God.

I'm doing pretty good about not worrying about my combination of letters.  I will continue to read and study because I am intellectually curious about this.  I'll keep working to regain my strength and stamina so I can feel that I've left the effects of the disease in the past.  My recent trip to Colorado with my sister in law and her sisters (my adopted sisters) was a big step.  I went backcountry skiing for at least 2 hours each morning and kept up just fine.  I went downhill skiing at Steamboat Springs for one day and successfully made it down my favorite black diamond run "Huevos".  You can see the photographic evidence in my Google photo album.  That's really good progress less than 9 months after my stem cell transplant.  Crossing the finish line on my 100-mile Pelotonia ride will be the ultimate expression that I've moved past the impact the disease and treatment have had on me.

I'll continue to live my life one day at a time trusting that, as it was before my diagnosis, my time on earth is in God's hands.  But I do need someone to tell me whether or not I should stand up.