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.