I Didn’t See That Coming (or I Just Have No Words, part ii)

No, I really didn’t see that coming, not even a hint of it. I’ve had the great good fortune to have a pretty good set of genetics.  Mind you, these aren’t the ones that make me devastatingly handsome or predispose me to the ideal physique with bulging pecs and a washboard “six-pack” stomach, but these genetics make it so that I just don’t get sick.  I rarely even get much more than a cold.  Yeah, I had the chicken pox when I was a kid and I had the shingles when I was in my early 40s, but nothing bad.  I don’t get flu shots typically and I’ve never been in a hospital except as a visitor. I’ve been safe as a driver and although I ski and cycle, never out of control, so I don’t get the fancy injuries that give me scars and the accompanying bragging rights.

That all changed Thursday.

I had a blood test for insurance purposes at my new job, ostensibly looking at risk factors like high cholesterol. Getting the test would qualify me for a 10% discount on my premium after my initial 90 days on the job had elapsed. When the test results came back, I saw that my cholesterol count was down 40 points from a year ago, so combining that with the weight loss I was experiencing from a healthier lifestyle, I was pretty happy. I had scheduled an appointment with my new general practitioner at the VA hospital here in Salt Lake so I could talk about getting off high blood pressure medication if weight loss got down to a certain point and he thought it was a good idea.  I showed him my blood test results from the insurance draw and asked him if there were anything I should do.  He asked me to get another draw while I was there, so we could see a trend.  I had gone out over New Year’s and caught a cold and we assumed some of the numbers might have been skewed a bit as a result. He also asked me to come back in a month to follow-up.  That month came and went and my blood tests didn’t change.  It was enough of a concern that he sent them to a hematologist, who in turn scheduled me for a bone marrow biopsy just a couple of days later.  If the word biopsy doesn’t get your attention, not much will.

My doctor and I didn’t discuss that at all.  Going to a clinic for a follow-up to biopsy with no other stops in between was jarring.  When I showed up, I asked what the hematologist was looking for and very matter of factly, he said he suspected I had something called myelodysplastic syndrome (or MDS).  Not having any idea what that was, we at least had a name.  I had the procedure done – something that was downright unpleasant but not unbearable – and then while the doctor was out of the room, I found it on my smart phone.  I was now officially freaked. MDS is a killer and includes famous victims like Carl Sagan and Susan Sontag; a more recent survivor in the headlines is Robin Roberts. He said he couldn’t be sure, but was likely to rule it out along with leukemia, so I was feeling quite relieved, but still a bit unsettled. The Internet is, without doubt, the hypochondriac’s playground and while I am probably more the polar opposite of a hypochondriac, I was now getting past freaked and more into scared…not quite panicking yet. I would be coming back in a week to get a better idea of what I was up against.

Then came Thursday.

My two moms (my mom and her sister – both kidders, both eminently sensible, and both fiercely protective of me) came with me just in case things got dicey and to take notes. When the hematologist came back, he re-iterated that he didn’t think I had an acute leukemia, didn’t think I had MDS, but did have a blood disorder that would require a marrow transplant in a few months and that he would pass my case over to another doctor from the Huntsman Cancer Institute to get a transplant in the works. Wait, he said the “C” word and the “L” words that shall not be named.  He said I had a leukemia, a cancer of sorts.  Back-up a minute.  I’m feeling healthy. My work-outs at the gym are progressing nicely. I’m skiing. I’m happy. I’m not sickly or pale and don’t have any of the symptoms…none of them. So, I would be getting with this other hematologist that specialized in malignant blood cancers in a couple of weeks when he got back from vacation.

So, there it was. I have freakin’ leukemia.

The nurse came over with excellent, practiced bedside manner and gave me her cell number and asked me to give her a call if I had any questions or concerns and that we would be getting a call with the appointment shortly. We didn’t make it down the hallway to the parking lot before she came back with the news that the doctor was rushing over from the Huntsman Cancer Center to see me now. He wasted no time in telling me that despite how I felt, the lab results were conclusive that I had acute leukemia.  Wait…back up again. This is the bad stuff. I couldn’t wait 3-6 months for the transplant because I don’t have 3-6 months. This could turn on a dime.  My mom asked him, “If this were your son, what would you do?” He didn’t miss a beat, “Admit him tonight and treat it aggressively.”

So, there it was…not just leukemia, but freakin’ acute leukemia.

He admitted that when he saw the lab results, he was expecting to see a sickly old man and was genuinely surprised to see me in good shape, with plenty of energy. That, notwithstanding, I drove home, packed a bag and was admitted a couple of hours later.  That night I got a chest X-Ray, an MRI, a battery of blood tests and cultures and then got some sleep before more poking and prodding.  It’s not just every day you get to wake up to someone sticking a big honkin’ needle in your spinal cord, followed up by another MRI, an echocardiogram, an EKG, a full body bone scan, and so much blood being drawn you suspect you’ll sparkle like one of the vampires out of Twilight. 

I got to come home for the weekend, but I go back in on Monday morning to, as the hematologist said, “treat this aggressively” with chemo.  I’m not looking forward to this at all, but suffice it to say, the alternative is not at all a good thing. I have a lot to live for and a lot of things yet to do in my life. No bravado here, but I’m going to beat this. There’s a lot of sick and fever ahead, not to mention the hair loss thing which I’m just stoked about.  There’s also the fabulous weight loss program, but I didn’t plan on losing the remaining 10 pounds this way, I assure you! I had that part nailed. I imagine there are going to be nights ahead where my pillow is wet from tears as well as sweat, but because I have people who care, I’ll not only survive, I’ll come out on the other side with insight I would have otherwise missed. There are things that we only see after having gone through our own hell of sorts. This is one such opportunity.

I have acute myeloid leukemia.

And as hard as it is for me to actually say, it’s harder for me to accept the kindness and concern of people. I’m just a bull-headed, do-it-myself kinda guy and the Navy made me ‘suffer in silence,’ more often than not. But I can’t do that today and I can’t fight this unseen thing inside me without the great sea of friends around me...and if you’re one of those people, I want to thank you now as well as later. I don’t know that there’s an Emily Post-prescribed response to those five words, but the thing I know I need the most is just you. Be there…just be there.

OK, pass the tissue. I need to melt down in a corner somewhere.