In an effort to (1) alert interested parties that I am still alive and kicking, (2) have a (slightly) more uplifting comment sit atop my blog, and (3) push that photo of the “madam” puppet farther down the queue so it doesn’t pop up every time I reference this blog online…I thought I would cross-post something that I posted in a comment on Pat Killingsworth’s blog.
Pat had discussed the moment of his diagnosis. It’s certainly a life-changing moment. I started this blog to at least part put the lie to the idea that one replaced one’s birthday with the date of one’s transplant. I hoped that would be rubbish and indeed it has been. My life two months before my transplants wasn’t very different from my life right now.
But my life is undeniably very different from how it was before transplant. In some ways, horribly so (complications, awareness of one’s mortality, the impact on career and other aspects of one’s “normal life”) but in some ways beautifully (a resolve to be more positive, to not be bothered by trivialities, a perspective on helping others). Don’t get me wrong, I’m not Pollyanna-ish enough to suggest I’m glad I got cancer. But I do take what learning from it that I can.
In any case, the date of my diagnosis was a bigger life-changer than the date of my transplant, and I recall it pretty clearly. Pat had asked for people to discuss the moment of their diagnosis. Mine can be found elsewhere in my blog in the first pages, but I reproduce a version of it here.
Have a good weekend, all!
I had turned 40 a few months before, and I noticed a pain in my shoulder. I had always viewed — pardon me for those in the profession — chiropractors as somewhere just above witch doctors on the medical ladder. But I considered that I might need to see one and I thought the pain was simply age related. I had no idea that it was what it turned out to be…a tumor.
I have genetically high cholesterol, and had been on Lipitor for some time. Lipitor can irritate the liver, so one generally needs bloodwork done every three months to ensure things are okay and maintain one’s prescription. I had avoided this for a year because I didn’t like needles (editor’s note: did I pick the wrong disease OR WHAT?!?!?!?). When I tried to renew my prescription, my doctor told me I needed to man up and get the bloodwork done or he wouldn’t fill it.
I got my bloodwork done sometime in early October, 2008. Two days later he called me and said he wanted to do one more test. I went back in and gave more blood. The next day he called me and said that I had elevated protein in my blood and he wanted me to see a hematologist. I remember clearly sitting at my desk (directly to my left as I type this), with a white note pad, looking out the window as I took notes on what seemed to be a very strange conversation that wasn’t even threatening at the time.
At that time, I was very naive about hematology (really, though, isn’t everybody unless they have a need to be learned about it)? I thought the protein might be a reflection of my diet, which emphasized lean protein. He gently told me he didn’t think so, and that it was most likely a condition called MGUS. He told me that there was a small chance it could also be something called Multiple Myeloma (I can see myself writing it down in my mind’s eye right now — blue ink on that white notepad). I still wasn’t that nervous, but jokingly said “anything that ends in ‘oma is bad.” He said it was a “malignancy of the blood” and that it wasn’t as bad as leukemia or anything like that. He’s a very non-alarmist sort of guy, my primary care physician.
So I made the appointment with the recommended hematologist, and that night I spoke with my childhood best friend, who himself is a primary care physician. My childhood best friend, unlikely my own primary care physician, is a bit more of a stress case. He told me that MGUS was “terrible” and that Myeloma was “fatal in three to five years” and that I needed to rest more, quit my job, consume 10X my daily Vitamin D, give up wine, etc. I was depressed. Possibly more about the over-the-top lifestyle changes than the diagnosis, which I still had trouble understanding could be real.
I saw the kindly Beverly Hills hematologist, who explained that my bloodwork looked fine except for the protein, and he thought it was very unlikely to be anything other than MGUS. He said they rarely saw Myeloma in someone my age, that 2% of the general population have MGUS, etc. He wanted to do a bone marrow biopsy to confirm that’s what it was. I wasn’t prepared to do that the same day, and I wanted to be given conscious sedation for it, so I scheduled it for the next day. Along with many X-rays.
The next day I went in, had the BMB and X-rays and left. I still wasn’t that concerned, buoyed by the doctor’s opinion that all the other tests looked normal. I had good amount of the “good protein” (albumin), normal B2M (which would be high in cancer), good kidney function, normal red and white and platelet counts, etc. “Everything is pointing towards MGUS,” he said. The hematologist flat out laughed when I told him my friend said I could have 3-5 years to live. He said that was ridiculous, and I should be more concerned about crossing the street as I left the office.
Now, as it happens, my daughter (5 at the time) had recently been diagnosed with a pretty serious retinal defect that would render her with seriously impaired vision and with no current means to correct to treat it. I was hoping to join the board of the Jules Stein Eye Institute at UCLA so as to be up to date on treatment options and possibly even influence the direction of research, etc. On the day after my bone marrow biopsy, I had a meeting with their director, a forgettable man whose first name, now that I think about it, was Bart. I never made that connection before just now — funny how the mind works.
Anyhow, *this* Bart and I had a bit of a disconnect. Here I was, a senior executive at Disney, involved in strategic planning and feeling as though I could have a material impact on the Eye Institute’s future direction — and this guy’s idea of my ability to help was to drive around bad parts of LA in the “Vision Wagon” handing out pamphlets about the importance of having your eyes checked every two years.
Frankly, I was a little perturbed as I was driving home.
I was on a call with my office in my car at around 2:30PM — on Mulholland drive as it happens, I remember that clearly as well — speaking with a newly-minted graduate of a top business school to whom we had extended an employment offer, and I was convincing him of the merits of joining Disney, when I saw call waiting coming from the hematologist. I politely excused myself, leaving my colleague to finish the sell job.
I said a quick prayer and picked up the other call. I pulled over to the side of the road because I was concerned that traveling through the canyon road might lose coverage. The hematologist said “I’ve received the results of your bone marrow, and it looks like you have multiple myeloma.”
I was stunned. I paused a moment and said “Does this mean I’m going to be around in five years?”
The doctor said, soberly, “that’s a very difficult question to answer.”
In my mind, I was pretty ticked off. Wasn’t this the guy who three days ago was LAUGHING at the assertion that I only had 3-5 years to live?
I was going to voice some incredulity at that flip-flop, but determined a better question was simply “is it curable?”
He said “it is TREATABLE. I’ve cleared my calendar tomorrow afternoon, you will be my only patient. Come in at 3PM and we’ll take as long as you need to discuss the options.”
And that was “the moment” of my diagnosis.
So as to make sense of the Bart coincidence to those that don’t already know, let me add a brief epilogue.
In the 3PM session the next day, I told my doctor I wanted to beat the disease and would travel anywhere in the world as needed. He told me I didn’t need to leave the US, but that there were a number of different approaches to treatment. He said that he recommended the use of dex and thalidomide, followed by one transplant. He said that there was another doctor in town named JB, who he said was opposed to transplants, because “he doesn’t think they extend life expectancy…and he’s right…but I like them because you then aren’t on any drugs and you aren’t tethered to monthly doctor visits” (I didn’t question him about maintenance at that particular visit, but he told me at my next visit that he didn’t believe in it). He told me that Mayo agreed with his approach, and that when it came back, other drugs like Revlimid and Velcade could be used. How amazing this approach is to me now…so many things about my chosen doctor’s protocol that was deemed “crazy” at the time is now the standard of care. Maintenance. Revlimid in newly-diagnosed disease. Velcade in newly-diagnosed disease. Anyhow, I continue.
My diagnosing hematologist was open-minded enough to say that there was a guy in Arkansas named Bartalogie [sic] who did two and sometimes three transplants. I said “why would somebody do more than one if it doesn’t extend life expectancy.” The doctor said “he believes it does. And it is a factory there, they only treat this disease, and he sees more of it than any other center in the world…but the results have never been duplicated outside Arkansas so there are a lot of skeptics.” He suggested I go.
I consulted with several other specialists over the next few weeks at very prominent centers across the country, before ultimately being treated by Bart Barlogie. And the rest can be found in the pages of this blog. Suffice to say, I’m very glad to be here over five years later with no evidence of MRD at this time.
Have a good weekend, all!