Yesterday was the five year anniversary of my diagnosis.
I had had my bloodwork come back and the doctor had said that “everything is pointing to MGUS” since I had proper red, white, and platelet counts, calcium was okay, B2M was okay, albumin was okay. Other than the M spike which elevated my protein, it looked like it wasn’t Myeloma.
My dear friend Dr. BM had told me that people die of Myeloma and this was a terrible thing and even MGUS was bad. Dr. SH, the hematologist, had laughed this off and said not to worry and don’t be silly and all that good stuff. So I wasn’t as concerned as I might have been.
I had met at UCLA with the Director of the Jules Stein Eye Institute earlier that day. My daughter has a genetic condition with her retina that has left her with poor vision that cannot be corrected with glasses and I was trying to get involved in some capacity. A friend who has some influence with that organization made the introduction and I was thinking I would go there to discuss being on the Board of Directors for the Eye Institute.
The Director there didn’t see it the same way (no pun intended but hey, that’s pretty funny). I left there with his suggestion to drive around bad neighborhoods in LA in the “Vision Van” and encourage gun-toting gang members to get their eyes checked once every two years.
This was not what I had in mind.
I left in a rather poor mood, having wasted my time and been somewhat humiliated in the process. I was driving to my house. It was a sunny afternoon. A graduating student from Harvard Business School was being recruited by Disney, and my colleague EP and I were on the phone with him convincing him to join our group when my call waiting kicked in. I saw it was Dr. SH’s office. My heart started racing, and I dropped off the work call with my apologies. I said a quick little prayer and picked up the call.
Dr. SH said “I have the bone marrow results back, and it looks like you have Myeloma.”
I was shocked. Numb. This was supposed to be MGUS. I can’t remember if I asked if it needed to be rechecked, but I think I did ask. It did not need to be rechecked.
“Am I going to be alive in five years?”
“That’s a difficult question to answer.”
REALLY?!?!?! Two days earlier it was a joke when I relayed my friend’s concern, and now all of a sudden he can’t tell me if I’m going to be alive in five years?!?!?!?
He continued. “I want you to come in on Friday [the 15th, I believe]. You will be my last patient of the day so we will have plenty of time to discuss options.”
I called my wife. We were both in hysterics.
And that began this journey in earnest.
I considered posting yesterday — but I thought not posting would send a message. Yeah, it’s been five years. Yeah, I’m past the point where that particular doctor couldn’t confidently say I’d still be alive. Yeah, I’m still in complete or near-complete remission. All good stuff.
So to drop everything and post yesterday would have been acknowledging too much to the disease.
I still have to respect it, unfortunately. I still can’t confidently dance around, laughing in its face. It could still come back and if it comes back, the results have not been good.
BUT…I found a doctor that believes he can cure the disease. I went through aggressive treatment. The disease has been gone for over four years. My recent tests, while inconclusive on blood, are highly promising on bone marrow. We’ll see where we are in January. I also want to have a conversation with Dr. R at Mayo, who wrote about this “secondary MGUS” condition that it appears I have. In their research, they don’t understand causality or the prognistic value, but they have seen the late-emerging secondary MGUS is associated with significantly greater OS. At it was seen in about 15% of the people they studied. It bothers me that Dr. BB hasn’t seen enough of it to immediately recognize it in my biology and to assuage my concerns — but we’ll tackle that when we can.
Meanwhile, I’m here. I’ve adjusted to the “new normal.” Yes, there are issues — I’m not sure I’ll ever get 8 hours of sleep on a consistent basis again. My GI tract doesn’t work as well as it did before I got cancer. I’m missing a chunk of fingernail (and a bit of finger) from the tip of my right index finger and it’s unpleasantly numb when it touches something, like somewhere between a foot falling asleep and a funny-bone being hit. And I tire more easily than I used to. And then, I must admit, there’s chemo-brain…which has had more of an impact on my career than the rest of my life but which has been an issue.
All this said, as I pointed out, I’m still here.
And that, really, is what matters.
So on this five year anniversary plus one day, to the newly diagnosed: there is hope. In fact there is even more hope today than there was five years ago. To BB and company, THANK YOU THANK YOU THANK YOU for saving my life. To SH, my diagnosis hematologist, THANK YOU THANK YOU THANK YOU for being open-minded enough to mention BB to me. I’d like to also thank my caregiver and wife, Jill, the other doctors that have weighed in with their opinions and help (both formal and informal) over the years, and to the wonderful friends and followers I have on this blog, and my fellow patients in a broader sense.
And as far as five-year anniversary comments to the disease…well, Myeloma, you can go !*&&)(*!@#! yourself. :)