Walkin’ the Green Mile

I ain’ committed no crime, yet I’m on death row in ‘cell #6,’ waitin’ ta walk the big ol’green mile. I’ve been given six lethal infusions that are systematically killing my capability to produce blood. Without intervention, I will surely die. This is by design of course, but it is nonetheless, very much factual. Let me pause while I swallow the very big lump in my throat. This latest infusion packs a pretty big wallop. I’m feeling a bit lightheaded, my ears are ringing above authorized levels, and I have this funny sensation in my sinuses. I have developed rashes in the crooks of my elbows and knees and I had a rather bad day of “shake ‘n bake” (chills and fever) and I don’t feel well enough to eat without throwing it up again.

Tomorrow, things change forever. Or you so might think.            

I’ve already begun an infusion of an anti-rejection drug called Tacrilimus so that at some point tomorrow, I will receive stem cells from Hans, my mystery donor. Those cells will immediately go to the ‘iCells’ and become the ‘0’ required type I need.

The day those cells that look little more than ketchup push into my veins, many consider my new “birthday.” So, while I will have walked that green mile, I will also have found a new life after considerable struggle. My new ‘birthday’ turned out to be pretty nonchalant, but it presented a new chance at living. It was a very quiet 10-15 minutes, yet powerful in significance.

So, why ponder on the details of a procedure that is considerably uncomfortable and one that has mortality figures attached to it? Because life, at the risk of coming across as a wee bit glib, is important and those of us who have threatening situations should recognize that in truly the starkest of terms. It sucks, it hurts, and there’s no fun involved at all, but I will survive. I’m profoundly grateful to you all for your best wishes, your kind smiles, gifts to my family, and for all the small details that (I guarantee you I don’t miss attention!). In truth, I didn’t realize that anything I did had anything to do with those of you who had offered up your own well wishes until I had emerged from my own ‘hovel’ of sorts. After all, this all seemed liked it was most assuredly, all about me! Even though that was true to some extent, I was about to learn that wasn’t quite true.

There are a lot of people at different stages of their treatment shuffling through the MTU each morning, but only about half a dozen inpatient rooms as most of the transplant procedure actually takes place outside the hospital. It makes things overall easy to keep track of everyone. Once I went inpatient for my actual transplant, I lost track of a lot of my compadrés going through this loveliness with me. Much like my first hospitalization, I lost my strength and just felt like watching the birds when they happened to cross my path. Still, part of my daily regimen, is to take a walk. On returning back, I met up with a wife of of a guy going through an “auto [providing one own’s stem cells]. The two of them had just been home for a couple of weeks fishing and had recently returned back to the MTU to finish the deal. Each regimen has its plusses and minuses, inevitably leaving you with the “I couldn’t do that!” expression on your face. In this case, it was full body irradiation.  That was the hurdle I struggled with, yet for their relationship, that’s what he would do for her.

I think that’s when it struck me. It isn’t all about me. In her very simple, pleading voice, she explained to me about her husband sleeping in one of the adjoining suite of rooms. She told me, “I can only imagine what he’s going through, but it’s the least I’d do for him. That’s what love does for one another. So, at that little alcove at the end of the hallway, I saw it wasn’t about a single person. Going through the extreme sacrifice of cancer treatment is as much for others as it is for oneself.



The day before leaving for Seattle, we all gathered for a BBQ in Park City. A large version of this picture hangs at the foot of my bed at the hospital, reminding me that I have a lot of people I am living for and a lot of people who love me. This is only a fraction of the who' fam damily!

We walked each other back to the MTU where her husband was asleep and I had some new things to think about. The day before I headed out from Utah for this grand adventure of healing, this pic was snapped and deemed “Team Todd 2013.” It has most of my local family and it was blown up to poster size so it can look down on me during some rather lonely nights. I am without a spouse and my children live on the other side of the country, so the poster is significant. My children and indeed those smiling down on me from the solitude of Team Todd 2013 are those whom I have to garner the strength to keep living and fighting for. It is indeed not just about me. Happy new birthday, sure…but it means so much more, especially to those who walk with me. The only crime I will have committed will be the one of supreme selfishness to ignore this birthday.

Be well, stay strong J, and much love to you all!

Today's music:  Magia de Amore by Vitorio Grigolo

 

Te recorro lentamente por la piel
Te acaricio tiernamente las mejillas
Y mis manos se enloquecen al llegar
Lentas en tierras perdidas
Suaves colinas dormidas
Y mi boca que no deja de besar
Y se pierde en las arenas atrevidas
Y tu playa se confunde con mi mar
Anchas, ondas compartidas
Sabias, gaviotas amigas
Magia de amor
Juego inocente
Loca ilusiòn que escapò entre la gente
Y que vuelve a mi lado
Sin otra intenciòn que vivir
Sin pedir un por qué
Ni olvidar el perdòn
Me fascina tu manera de querer
Y me entrego a tus malicias decididas
Me abandono a la conquista de tus pies
Bellas palomas prohibidas
Fiesta de miel escondida
Magia de amor
Juego inocente
Loca ilusiòn que escapò entre la gente
Y que vuelve a mi lado
Sin otra intenciòn que vivir
Sin pedir un por qué
Ni olvidar el perdòn
Que vuelve a mi lado
Sin otra intenciòn que vivir
Ni olvidar el perdòn
Sin pedir un por qué
Ni olvidar el perdòn

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.