Never tell me the odds

When my doc initially revealed that her plan for me included a stem cell transplant, I didn't really think much of it. Step one, get some stem cells. Step two, inject them into me. Step three, my problems go away.

Good thing Brooke comes to these appointments and actually googles these things.

The goal is to give me a new immune system, because the one I've got, despite serving me fairly well for most of my years, has done a real shitty job of dealing with non-hodgkin's lymphoma.

That's not a very scientific description, so, here goes. The basics: our stem cells are capable of becoming the various cells in our blood stream -- including red blood cells (which carry oxygen to muscles), white blood cells (which fight infection), and platelets (which clot). Most of these come from our bone marrow. Some diseases inhibit production of these cells, and some treatments damage bone marrow and its ability to produce healthy stem cells. 

Lymphocytes are a type of white blood cell which develop in the bone marrow, and non-Hodgkin's lymphoma starts in these cells. The disease causes lymphocytes to multiply uncontrollably, and they can effectively disable the immune system of which they are a key component, cause tumors, and spread to virtually any organ or tissue. 

In my case, my lymphoma is such that the doctors are convinced that even if the treatment I'm getting now is successful in driving the cancer into remission, it will come back. My best bet to actually "cure" the cancer is a stem cell transplant, the idea being that someone else's stem cells will not produce the cancerous lymphocytes.

The more I learn about the stem cell process, though, the scarier it gets.

I'll receive very high doses of chemotherapy and full-body radiation in order to kill my immune system and any lymphoma cells still kicking around. Then the new stem cells are received via blood transfusion, and they settle into the bone marrow, ideally without trouble. The hope is the new stem cells begin producing not just healthy blood cells, but also kill off any remaining lymphoma cells.

In the short term, the challenges involve the dangers of infection from lack of immune system, and the host of chemo- and radiation-related side effects: nausea, loss of appetite, diarrhea, hair loss, etc. (A-ha, you're thinking "hair loss is no problem for Johnny C." True, but a few weeks without nose hairs or eyelashes is quite irritating).

In the longer term, there are possible side effects like bone damage, infertility, cataracts and an increased chance of contracting other cancers down the road, like leukemia (because of the radiation and the toxicity of the chemo). There's also a thing called "graft-vs-host" in which your body's new cells start attacking, or rejecting, various body tissues it thinks are foreign. The possible impacts of that seem to range from annoying rashes to death. This can actually be a good thing too, though, if the new immune system sees any remaining cancer as foreign and attacks it.

My doctor estimates the transplant might happen in mid-October. I'll likely spend 2-4 weeks in isolation in the hospital while my immune system rebuilds, and then further recovery at home after that. The docs figure I'll be off work until the end of the year, but we'll see about that. I'm starting to go stir crazy and don't want to get all Rear Window.

The stem cell process is much, much easier on the donor. Previously these transplants were done primarily through bone marrow transplants, which involve surgical procedures for both donor and patient. More and more, though, it's being done via the blood. For the donor, this involves a few days of injections to ramp up their production of stem cells, then blood is drawn.

I've had a lot of people ask me if they could donate, and the answer is yes, and no. You can donate (and please do), but not for me. The odds of an unrelated friend being an appropriate match is something like 1000:1. Even my parents only have about a 200:1 chance of being a match. The only person the hospital was willing to test was my sister, a 4:1 chance, but it turns out she wasn't a match. But thanks for trying, Trish. Love ya.

The transplant team here at the Ottawa General is now searching for matches on the international registry, which apparently has about 12 million donors on it from around the world.

And this brings me to the point of this long post. I want to encourage everyone who is healthy and willing to please check out www.onematch.ca in Canada or bethematch.org in the U.S. and consider signing up for the donor registry (particularly if you're a young, non-caucasian male -- ethnicity is relevant when seeking matches, and ethnic communities tend to be underrepresented). You might save someone's life, and signing up is apparently as simple as swabbing your mouth. I wish I had done this while I was able to, before my blood went bad. 

If you doubt the impact such a simple donation could have, take a look at the story of Montrealer Mai Duong, a young mom of Vietnamese descent who recently suffered a relapse of her leukemia. She needs a stem cell donor but has as yet not been able to find a match. So she's embarked on a Youtube campaign to encourage Asian-Canadians to sign up to the registry.

My transplant doc informed me that I really only have a 10-15% chance of dying during this procedure. He positioned this as a positive, but basic math says those odds stink. As I've mentioned before, Russian roulette is only slightly more likely to kill you. 

Going into it as healthy and strong as possible gives you a better shot at success, so that's what I'm trying to do. 

I should probably not have had that second piece of cake tonight...

And here my troubles began...

I never wanted a blog. Honestly, unless you're particularly funny or have some rare insight into sports or politics, they always struck me as vain and unnecessary. 

Things change. I've received a hell of a lot of support from folks since I was diagnosed with non-hodgkin's lymphoma in April of this year, and I get a lot of really kind inquiries into how I'm doing and how treatment is progressing. This seems to be a handy way to keep people up to date. I've also gleaned a fair bit of information from the blogs of others who have gone through similar things, so I figured I should pay it forward and put my experience out there.
 
So many people that ask me about these last few months preface their questions with something along the lines of "I know you're a really private person, but..." And they're right. But I really don't mind folks asking about this stuff. What's more, I truly appreciate every call, text message, email, card, and visit I get. The kind of support we've received, whether in the form of kind words, a supportive workplace, emergency late night rides and babysitting when I've been in the ER, the food that people have been dropping off for us, grandparental daycare and lawn mowing services, sisterly visits from the prairies to help with the kids, or friends just buying me a beer when we both know I probably shouldn't have one -- well, my family and I appreciate all of it more than I will ever be able to say.

This first post is a long recap of the past few months, for those who are curious. And forgive me if there are gaps or if any of the details are a bit off, but one of the odder symptoms of cancer treatment is what they call "chemo brain" (or the more scientific "chemotherapy-induced cognitive dysfunction/impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment"). In effect, people will say things to me -- like a doctor telling me how to take a certain drug -- and within minutes it's gone from my head, as if it never happened. For the record I doubt chemo brain is a real medical condition --  but it's a great excuse for when I do my guy thing and forget shit. 

A year ago, I honestly had no idea what a lymphoma was. 

I think I only found out about the disease via Dr. Google when last October I had a lump show up in my right armpit. That kind of swollen lymph node can be a result of a million different things, but I remember thinking "shit, I hope that's not cancer." A swollen lymph node like that would usually result from a simple infection, and that's exactly how the GP I visited wrote it off. It was understandable; lymphomas are notoriously hard to diagnose and easy to miss. And unfortunately it wouldn't be my last misdiagnosis.

Fast forward through a few months of various antibiotics to fight a nonexistent infection, and what was an almond-sized lump in October eventually grew to the size of a small fist. By March of 2014 I had to have it surgically removed. A subsequent biopsy of the mass showed no trace of cancer. Celebrations all around. And if there was no cancer, it meant I either still had an infection or there was some kind of autoimmune disorder at work. Right? Right.
 
Within a week of that surgery, many other lymph nodes started swelling -- rapidly. What followed was a month and a half of the Ottawa General Hospital's experts in infectious disease and general medicine desperately trying to figure it out: if not cancer, what kind of infection or disorder was causing this swelling of lymph nodes? 

The leading candidate was catscratch disease, which is exactly what it sounds like, and which I found odd as I'd never been attacked by a cat. Kikuchi-Fujimoto disease was mentioned as a possibility. Sarcoidosisas well, which I think I saw on an episode of House. Persistent bacterial furunculosis was possible, as were mycobacteriosis, chronic granulomatous disease, and fungal sporthrix. I didn't even look some of these up, they sounded so awful. Some were actually worse than cancer, so in some ways I was lucky. I should also note that my right arm had swollen at this point to about triple its usual size. 

I had a second surgery to remove a lymph node near my collarbone in April, and the biopsy of that node finally returned the diagnosis of non-hodgkin's lymphoma. I can't say I didn't expect it, but it was still a pretty big shock. Several doctors were on hand to inform me that this was one of the easiest cancers to treat, and that with my age and general good health treatment should go smoothly, quickly, and easily. 

It wouldn't take too long to prove all of that wrong.

Overly positive and optimistic doctors are not a good thing. I like my medical advice blunt, to the point, and most of all, accurate. Because what I in fact had and still have is a large cell anaplastic lymphoma, a subtype of t-cell lymphoma. It is a more rare, aggressive and difficult to treat kind of non-Hodgkin's lymphoma.

By early May it had spread across most of my lymphatic system. Internally, unseen lymph nodes were discharging fluid into my right lung and were beginning to press against my spine. My spleen was apparently swelling. My resting heart rate had climbed alarmingly. I was getting mysterious fevers requiring hospital stays (fever being a sign of infection, and infection being a big fear for those with compromised immune systems). My right underarm was a plague of skin lymphoma so awful I had trouble looking at it. Soon, lymph nodes in my neck and jaw would swell to the point that I would worry about spending the rest of my seemingly brief life looking like the elephant man, and they made the slightest contact to the back of my head an excruciating experience (my doctor tested that out by grabbing my head Chewbacca-style during one appointment, and I almost fainted). In one span of three weeks I would see my body weight fluctuate by about 40 pounds. I spent a couple of months sounding like Mickey Mouse because of lymph nodes pressing against my laryngeal nerve. Two ambulance rides later, plus a pile of ER visits, a catheter through my back into my right lung, a second tube running through an artery in my left arm, and things were really not going well.

Meanwhile, the chemotherapy wasn't going great. I'll leave out the more gross details of the side effects of chemo, but I actually had it better than most: my nausea was limited and quite tolerable, and my gut was okay for the most part. But I did grow (and remain) very weak, and the fatigue that followed treatments was beyond imagining. My immune system was basically gone and so I could do almost nothing and see nobody beyond family and medical staff. There were weeks where I could barely eat anything. Then there were weeks where I could eat but couldn't stomach anything with salt...or butter...or grease... or that had been in contact with tortillas. I love tortillas, but the smell of store-bought tortillas still kills me. The thought of hospital food in a foil-covered package nauseates me to this day, but that's probably just normal.

My first shot at chemotherapy (CHOP - Cyclophosphamide, Hydroxydaunorubicin, Oncovin, Prednisolone) had started well, but after about a week of my disease receding, it returned and started growing again. Imagine feeling your disease finally going away… and then coming back after just a week. So we tried a much harsher chemo treatment (ICE - ifosfamide, carboplatin, etoposide ), which went well for about a month before the disease started up again.

This is apparently not uncommon for those with t-cell lymphomas, but still, it was, to understate it, pretty concerning -- far more than I was willing to admit at the time for fear of discouraging my family. With a t-cell lymphoma you supposedly don't have the array of treatment options at your disposal that you would with, say, a b-cell lymphoma. It was not great that I was burning through existing options without success.

But after about nine months of medical bad luck, we might have recently had a good turnaround. Right now I'm on a new drug, brentuximab, recently approved in the U.S. and more recently approved in Canada, and it appears to be working. After only two treatments my disease seems to be in full retreat, and with very minimal side effects (so far). 

I'll emphasize that I'm trying to remain cautiously optimistic. It's too easy to forget that with my first two attempts at chemotherapy, I seemed to get better only to be disappointed when eventually all my symptoms returned worse than ever. I wake up every morning and check my body for new swollen lymph nodes that weren't there the night before. Negative John knows he'll find one soon. Positive John knows he won't.

For now, I feel good and am focusing on getting healthier and stronger in advance of the next step: stem cell transplant. From what I've read and from what I've been told, that will be by far the worst and hardest test yet. But the catheter into my lung was just removed, which is another step towards getting normal again, and I'm able to play with my boys, go out with friends, ride a bike, and hang out with my wife like a husband and not a patient. So even Negative John has to admit things are looking better.

I'm grateful for all the love and support I've gotten from family and friends. I'll try to keep this up to date going forward. I've a lot of folks asking about the upcoming stem cell transplant, so maybe I'll post about that soon (I promise to be more brief).

I'll end this post how I should have started it: by saying how much I love my wife, and underlining how special she's been to me in the last few months. Cancer, and I would imagine any other serious illness, is clearly far worse on families than on the patient. Brooke's taken on far more than she should have to, and I doubt I'd even be alive without her. Thanks baby.