The Short Story: You’ll notice the “living proof” tag on my page, I’m riding because my last Cancer treatment was in February 2006 and I’m now thirteen years cancer-free. If they let me select all three options, I would. Because I’m also riding in honor of Richard, Angela, Michele, Tracy, Jill, Janet, Bruce, Marci, Shannon, Pete, Roy, Jay, Debbie, and Nurith, and in memory of Jashvantray, Laura, Tomer, Linda, Lucy, Patrick, Linda, Kevin, Adele, Perry and countless others. Last, but even more importantly than the other reasons, I’m riding for Guy and everybody else who has held or are holding things together at home, supporting the people in their lives as they battle this disease. It’s harder than being the patient.

The Long Story: Easiest way for me to share this is to copy the email updates I sent out to friends and family, starting here:

May 5, 2005

Guess what Lance Armstrong and I have in common? Hint: it's neither bicycling ability nor am I leaving my wife and child for Sheryl Crow.

So some of you are aware of this already but I was diagnosed with Testicular Cancer last month. I had surgery April 22nd to remove the, um, offending anatomical unit, and over the last couple of weeks I've had a lot of blood drawn, drank some particularly vile glop to provide contrast for a CAT scan, and also sat down with an Oncologist. The good news: TC has a very high cure rate, over 90%, and my prognosis is good. The bad news: the surgery didn't get all of it, I've got an enlarged lymph node in my abdomen and an elevated level of Alpha Feto Protein, which means the cancer has started to travel. Given the cell type of my particular flavor of TC, embryonal cell carcinoma, chemotherapy is the treatment of choice (my God, my hair will fall out! Oh, right, never mind), and I'll be starting most likely on June 6. I'll be doing 4 cycles of chemo, each cycle lasts 3 weeks, so 12 weeks total. I'll be completely unavailable the first week of each cycle while foul things are dripped into my veins, and for the remaining two I'm going to try to work if I can manage it.

-John

This brought us out to August of 2005, when I got to rest, recuperate a bit, and a month later find out that the chemo did NOT get everything, which set me up for a Retroperitoneal Lymph Node Dissection (RPLND) to get the rest of the cancer. RPLND turns out to be the technical term for open patient up from sternum to groin, move everything out of the way, remove remaining tumor plus all the rest of the lymph nodes from the back of the abdominal wall (right next to the aorta and the spine), put everything back, and staple back together.

Which led to this email:

Ow.

Ow, ow.

$%&*(+@#()!! ow.

Ow.

Pretty much sums up the surgical recovery experience. Thank god for my magic morphine button. Am now home and resting comfortably but I miss my magic morphine button.

Attached is a picture of the results for those of you who like your visuals. My advice is don't open it if you are averse to either:

A. Industrial grade incisions that look more like something out of CSI than anything else.

B. Paunchy middle aged man-gut.

-John

Said picture is in my Gallery, see the warnings above…

After surgery, my AFP levels still weren't normal, which led to this:

October 24 2005:

Subject: The latest...

And we're DONE screwing around this time, no more pansy-ass treatments like regular chemo and teeny little surgeries like the one I just had....

Regarding the surgery, I'm recovering nicely and as long as I keep my shirt on and don't try to lift anything heavier than 10 lbs, it's not really apparent that four weeks ago my viscera were anywhere but where they normally belong.

We got the results back on the histology of what they took out of me last month and also my latest AFP levels. The good news is that by histology they didn't find any spread of live cancer cells beyond the main mass that they took out, margins were clean and so were the additional lymph nodes that were removed. Also, just prior to starting chemo last week my AFP levels were down at 17, (normal is 6), which is the lowest they have been since we started this whole mess. The bad news is that there were live cells inside the main mass, and my AFP level is not dropping as fast as we would like, which means that most likely there's some cancer cells still hanging about. Best guess is somewhere in my lymphatic system, but the fact is we really don't know where they are.

So as a reward for recovering so quickly from the surgery I had last month, I got to start a new round of chemo last week! We're using a different cocktail of drugs this time, and because of the particular cocktail I'm getting, I have to get infused as an inpatient. Pretty much the same schedule as before, a three-week cycle where I get infused for five days then get the next 16 at home to recover. I'll get two cycles of this, so six weeks total. The goal here is to knock down as many of my cancer cells using standard therapy as possible, however, given that these guys have already survived one round of chemo, the odds of getting all of them this way aren't that good. What we're really doing is getting as much of the cancer cleared out as we can, which increases the chances of the next phase working, which brings me to the REALLY fun part, which is High Dose Chemo.

Sometime in December I'll get shot up with various growth factors for blood stem cells so I'll have lots of them floating around in my blood stream, they'll do apheresis to collect the stem cells and then they'll get frozen away. Then they're going to hit me with whopping great doses of chemo to get anything that's left after the previous two rounds. The goal is to kill 100% of the cancer cells so that they never come back, the side effect here is that my immune system is pretty much going to be gone once they're done giving me the chemo. When all of the chemo is cleared from my system, they'll infuse the stem cells we collected previously back in, the stem cells travel to my bone marrow where they belong and my immune system comes back. We'll apparently be doing two rounds of this, not quite sure right now what all the logistics are going to be yet, as I haven't talked with the Oncologist who will be running this phase of my treatment. He's actually a specialist in lymphomas and leukemias, where this sort of thing is much more common. What we do know is that we're probably looking at March before all of this is done, and I'll be spending a fair bit of time during December - March in isolation at Mass General. I won't *quite* be Bubble-Boy, but the risk of infection while my immune system is knocked down is pretty high. I'll be allowed visitors but everybody will be wearing masks, stringently washing hands, that sort of thing. It sounds scary but I'm told that the biggest problem I'll be facing during this time is boredom, as I'll feel pretty good through most of this, but they're not going to let me out to play...

More when I know it,

-John

Treatment went more or less a described above, I sent this email 13 years ago now...

From: John Smutko

Subject: Home, Hopeful, and Hairless

Date: March 6, 2006 6:00:59 PM EST

First off, thanks to everyone for positive thoughts/prayers/vibes/wishes as we've gone through this and sincerest apologies to any and all of you that I haven't responded to promptly the last few weeks, been a little distracted, sorry!

So, the brief version in order according to the subject line:

I got home last Monday after vigorous lobbying of my physicians and nurses over the weekend. I wasn't quite feeling 100% but since all we seemed to be doing was sitting around waiting for my digestive tract to straighten itself out I figured I could do that just as well at home as in my 18' X 15' cell, er, that is, hospital room. Guy and Casey were probably the only people happier than me to get me out of there.

And, the answers to the most common questions we've all got right now: What's the prognosis? Did it work? Well, we're hopeful, and both the situation going into the High Dose Chemo/Stem Cell Transplant and coming out of it is about as good as it could be considering how things have gone up 'til now. I could spend some more time putting a positive spin on this, but the truth is, we just don't know. There has been no detectable cancer in my system by both blood serum tumor marker levels and CT scan since November, before we even started the High Dose roller coaster, and so I'm officially in remission. Does this mean we got everything? Maybe. Probably. But reality is there's gonna be a long stretch of monitoring my AFP levels and regular CAT scans in my future. As so often happens in the ass-backwards world of cancer treatment, the longer we don't know for sure, the better. In other words, we want to see normal levels of AFP and nothing showing up on CAT scans for the next few years, so it's gonna be a while. Given that, I actually want to think about this as little as possible. Accordingly, I hereby reserve the right to answer any and all questions concerning when my next tests will take place and their potential outcome by either literally or figuratively sticking my fingers in my ears and saying La, la, la, I can't hear you. Seriously. I want to get back to my normal life starting now. Or, at least, starting when my damn eyebrows grow back, which brings me to item number three in the subject line.

I have no hair. Really. And no, before all of you overly clever types make the inevitable joke regarding the fact that I didn't start with much, this situation is by no means limited to the top of my head, nor even eyebrows, eyelashes, and mustache/beard. It's ALL gone. Everywhere. There's maybe 10 hairs apiece left on my arms and legs. And yes, I had sufficient time and lack of anything better to do to actually count them, although the levels of percocet and morphine in my system made for a somewhat iffy ability to concentrate enough to actually do it. This coupled with the foot long surgical scar and the pheresis catheter hanging out of my chest makes for a really attractive package just now, thank god my wife is understanding. Only positive is I'm actually under 200 lbs for the first time since college. I'm not recommending this as a weight loss program, but damn it's effective.

More details for those who have actually read this far and care to keep going. Fair warning, continuing means you're gonna hear more about my lower intestines and colon than you probably ever wanted to. The first round of Stem Cell Transplant went remarkably well. So they tell me. From my point of view it was the worst New Years I ever had. I mean, I've puked in the New Year on a number of occasions but the diarrhea was a novel twist. And while I'm sure the food service folk's hearts were in the right place on New Years Eve, I was in no mood to appreciate the party hat and noisemaker that appeared on my dinner tray. Fortunately, those symptoms cleared up in about 4 days and after putting my stem cells back, they let me go home after only 9 days. This of course turned out only to be a weekend pass as they let me go on a Friday and I promptly popped a fever and landed myself back in the hospital on Sunday for 5 days of IV antibiotics. Got out again, and recovered to the point where I was feeling really good by the end of January, which of course meant that I got to start the next round early. So back in I went on Feb. 9. Things actually weren't too bad, the first week that is. Had some nausea, but that was pretty much done the day after infusion of the nasty stuff ended. I got my cells back for the second time on the 15th, and they were actually talking about letting me get out of there over the following weekend. Then things went into the toilet on Friday night. Hah! I kill me. This started a week and a half of frequent diarrhea coupled with some of the most astonishing pain I've ever experienced, the result of which was that I spent most of the rest of my time in a lovely narcotic-induced fog. Apparently high dose chemo can result in inflammation of the colon. All I know is that I learned a distinctive stab of pain in my lower left abdomen meant things were rounding the corner and I had about 10 seconds to get to the bathroom and prepare myself for the even larger dose of agony that was coming. Mark, if you were wondering why I had to abruptly end our phone conversation, now you know. Emma and Hana, I *think* I actually talked to you guys individually later that day, but honestly, after 2 Percocet and a couple shots of morphine my memory of those events more closely resembles a deleted scene from the Trainspotting DVD than anything else. To top all of THAT off, as we got towards the end of my stay my blood pressure decided to go through the roof, apparently another fun little side effect of high dose chemo. This kicked off more treatment fun as we tried various drugs to get it back down, and just to be safe my treatment team decided to send me for a CT scan of my noggin to see if anything was going on there that could explain why my BP was suddenly going up. That was Thursday morning, seeing as how I wasn't going anywhere, the folks who schedule these things got me in for the actual scan shortly after NBC showed us Sasha Cohen falling on her butt. My doctor walks in the next morning with a good news/bad news situation. The good news, nothing wrong that would account for the elevated BP. The bad news, there was a half-centimeter something in my left frontal lobe. As we had not previously done any scans of my brain, they really had no idea what it was. Lovely. So he tells me that they're going to do an MRI to confirm what it is. The scheduling folks work their magic once again and I head down for the scan right after Chad Hedrick won the silver medal in the 10,000 meter speed skating. Fortunately my nurse Joanna had loaded me up with enough morphine and ativan so that I could frankly give a rats ass at this point. I then got to wait until Saturday morning for Emily (another of my nurses) to walk in with the radiologists report and a big grin on her face to inform me that it was just blood vessels and nothing to worry about. A word about Emily and Joanna and every other nurse that had to put up with me through this, these women are amazing, and I have absolutely no complaints about the care I got from all of them. OK, I could have lived without Joanna greeting me at the start of every shift with So how are your poops? in her Polish accent, but that's it. As you have no doubt deduced by now, high dose chemo not only kills tumor cells and hematopoeitic stem cells, it also does a fine job on your dignity.

Three more true tales of medical professionals:

1. So I'm being examined by one of the senior docs on the Bone Marrow Transplant team and the inevitable junior intern. What are you gonna do, it's a teaching hospital. As they are checking over my abdomen, the intern notices the aforementioned lack of body hair. He asks, I kid you not, So what's up with your underarm hair? Have you been shaving it or..? To my credit I did NOT respond with the first two things to pop into my head, which were No, two cycles of taxol and one of high dose chemo, dumbass. and Wow, I'd think Harvard would have taught you how to read a frickin' chart by now.

2. Apparently, somewhere along the line at MGH my height was measured and recorded as 6'0. I am in fact 6'2. Wouldn't have thought this was a big deal but it seems chemo dosage is calculated based on body mass and surface area, so getting the measurements right is actually a good idea. No fewer than 5 separate physicians and nurses poked their heads into my room to confirm my actual height. Mind you, nobody actually bothered to break out a scale or even a tape measure. This time around the filter was not functioning and I discovered that saying things like Hey, if I'm actually only 6 foot you'll have a nice margin of error on getting the lethal dose right and Come on, you guys haven't managed to kill me yet leave junior Interns confused and irritate the crap out of senior Attendings.

3. This last one is less about my medical caregivers and more about what 5 years of working with and for Salespeople has done to me. George, Stu, and Elizabeth, I hold each of you largely responsible for this. So one of the weekends I was in the hospital one of the Docs who usually treats lymphoma/leukemia patients was covering the transplant patients. He comes in and gives me the standard daily medical exam that has become such a treasured part of my routine. Being the first time I'd ever met him we go through the usual chitchat, he asks me what I do. I respond that I'm a scientist at a small biotech, I usually try to keep it high level with MDs. He says Oh really? Which one? I tell him, and say I'm actually an Application Scientist working with the commercial team.

Him: Oh, what does your company do?

Me (expecting his eyes to glaze over and move the conversation to a different topic): We sell reagent kits around RNA amplification for expression analysis

Him: What are you guys based on? IVT? Rolling circle? Turns out he's a fellow in one of the labs at MGH doing lymphoma research.

Me: None of the above, it's a novel technology

Him: How's it work?

Me: Want me to show you? I've got my laptop over here...

So I proceed to take him through the process and some of the data, thereby registering a number of personal firsts:

First time presenting to somebody actually treating me.

First time presenting wearing a T-shirt, hospital pants, and slippers.

First time presenting while half-baked on narcotics.

First time presenting to somebody who gave me an actual physical rectal exam.

-John

And since then? Well, with a couple false alarms, I’ve been cancer free since they let me out of MGH. I’ve watched my little girl growing up, and her new little brothers come into the world and become the marvelous little stinkers they are. I’ve been awed by my wife Gayun’s ability to hold our family together through my treatment and after, all while working with patients at the MGH Cancer Center as a Genetic Counselor. I’ve seen friends, family, and colleagues fight Cancer with grace and strength. I've been grateful that I survived, but struggle with the knowledge that so many others have not. Nobody should have to go through fighting this disease themselves or seeing somebody die from it.

That’s why I ride.