Day 30

Sorry for the lack of updates but there have been some unpredictable setbacks of late.

In positive news, engraphment has gone well. My new immune system has settled in well so far and things are progressing positively on that front.

But my big concern over the past days and weeks has been liver and kidney failure - not the most common side effects of the transplant process, but ones I've seemed to pick up nonetheless. I have a bit of an affinity for these odd side effects. It's not entirely clear what happened but it appears I developed a major clot in my liver which stopped it from working, which in turn stopped my kidneys from working. I was pretty out of it and am told there was talk of real organ failure and possible transplants. I wasn't taking it very seriously at first, but it was pretty serious.

Thankfully this is now in hindsight and what was a pretty serious situation seems to be moving in the right direction with my body finally healing itself.

Still, it's as though just when life seems to be on track again, things conspire to get so very, very hard. I try not to get to emotional here, but the constant hits are discouraging. My wife works very hard to keep me level, and I don't know where I'd be without her. I need this to be over and for things to be back to normal. I truly had no idea how hard this would get.

I've eaten very little these past few weeks and am looking a bit like an extra from the walking dead.

Day 12

Today's counts:

White blood cells: 0.1  (normal: 3.5-10.5, in billions/litre)

Hemoglobin: 85 (normal: 135-175, in grams/litre)

Platelets: <10  (normal: 150-450, in billions/litre)

Did you know hospital pharmacies stock beer and alcohol? Yeah, just in case they're treating an alcoholic for something and they need to avoid withdrawal. I'm hoping they mix up my meds one of these days and plug some whiskey into my IV.

I had the last of my post-transplant immunosuppressive chemo treatments yesterday. I hope that turns out to be the last chemo I'll ever need.

I'm getting daily transfusions of platelets as well as regular blood to bring up my hemoglobin levels (hemoglobin brings oxygen throughout your body, so a low count usually means one is tired and weak, which is indeed the case for me). Actually, apart from being incredibly tired and dealing with canker sores throughout my mouth and throat, I'm not doing too badly. And it seems my white blood cell count has increased from less than 0.1 billion per litre to exactly 0.1 billion per litre, so maybe my new immune system is settling in.

Now, I'm not normally one of those foodies that takes a pic of his meal and tweets it for the world. But I'll make an exception this one time to share with you some of the hospital's greatest hits from the past couple of weeks:

Classic Salisbury steak.

I think this was an egg once.

The raccoons that attack my compost every day wouldn't touch this horror.

Day 7

Today's counts:

White blood cells: <0.1  (normal: 3.5-10.5, in billions/litre)

Hemoglobin: 101 (normal: 135-175, in grams/litre)

Platelets: <10 (normal: 150-450, in billions/litre)

Day seven and I'm reaching the nadir of all the badness going on in my body. I seem to have made it through the worst of the nausea and gut problems. I'm currently dealing with pretty bad fatigue and lethargy, a pile of grumpiness, and of course the newest addition to my collection of side-effects, the mouth sores.

I had dodged these mouth sores on my first trip through chemo months ago, but this time I'm not so fortunate. I pictured them as gross, seeping, cold sore type wounds, but they're actually just canker sores...on my tongue, my cheeks, and probably soon my throat. This makes eating a real challenge so I'm on a mix of painkillers and magic mouthwashes just to be able to eat.

It's a bit of a cruel twist: I was able to eat at first but had no appetite, and now I have an appetite but eating is hard.

I have daily appointments at the hospital to get my blood tested and receive any IV drugs I need, including a daily antibiotic for prophylaxis.

I've noted today's blood counts at the top. My white blood cells are still bottomed out. Once engraftment of my new cells starts, probably in a week or so, we'll see that number climb.

I received a transfusion of platelets yesterday, something I'll need occasionally while my system grows (basically to keep me from bleeding to death if I get cut or injured). That platelet count remains low today, so I'm getting another transfusion. It looks like a bag of margarine emptying into my veins, which is a bit gross.

I should definitely give a shout out to the quality nurses of the blood and marrow transplant program. I'm in good hands here. Apart from a few days early on when I was having nausea issues and again later when I had fevers, I've still been doing this as an outpatient, and my day to day goal is to not be admitted to hospital. My mental health is definitely far better when I eat my own food and sleep in my own bed.

Day 3

These first few days have not been easy. Didn't think they would be, but I perhaps underestimated the nastiness of this procedure. Three days in and I'm pretty damned ill. But all will hopefully be better in a few short weeks.

I've reached some kind of terrible crossroads of fatigue, weakness, nausea, lethargy, boredom, irritation and other less mentionable things. This leaves me as nothing more than a lump on a log.

My white blood cell count has now reached almost zero. This is the chemo and radiation doing their things, a necessity before my new cells can take over. Now the antibiotics, antifungals, antivirals and immunosuppressives get their turns.

I've been asked by some folks going through similar things what the best anti-nausea meds have been, so I can touch on that here. Basically, use whatever works and use lots of it proactively. It's easier to prevent the nausea than treat it. I've had good luck with Zofran, which seems to be standard use with certain chemos. I had great luck with Emend previously, but that might only be an option with good insurance (which I'm fortunate to have). I've recently started on Olanzapine and Maxeran, so the juries are still out on those (I think one of those doubles as an antipsychotic for other uses). I use Stemetil on an as needed basis when I feel the nausea creeping up, and it works well. I tend to pop one before getting into the car, 'cuz my lady likes to drive like Burt Reynolds in White Lightning. Reason #402 why I love her so.

Lift-off / day zero/ my new birthday

Day zero, as they call it here. October 31 is my new birthday.

My new stem cells have arrived safe and sound and are currently making their way into my veins. 

This is what we've waited for, this is it boys, this is war...

Me and 270+ million of my newest friends.

This is pretty exciting for us, and the end of the long first leg of a journey. It's totally anticlimactic though, after the drama of chemo and radiation. It basically looks like someone's hooked a tasty caesar up to my IV. If I don't exhibit any strange reactions to the new cells I should be out of here in time for lunch.

My white blood cell count has dropped considerably over the last 24 hours, which is the desired outcome of all the chemo, radiation and immunosuppressive drugs. They'll keep dropping until they reach zero two to four days from now. My new stem cells will have less of a fight on their hands when they start settling in, but I'm now far more susceptible to illness and infection. 

Again, I truly wish I could thank whoever out there has taken the time to donate these cells. It is truly an indescribable gift. 

T minus-1

Only one blast of radiation left to go after this morning's session. The past couple of radiation sessions have been problematic and featured a variety of technical glitches. They say it's all good, but that's small comfort when dealing with radiation, and if I turn into the hulk tonight or start seeing through time that's where I'm pointing the finger. At least they put on a Dylan soundtrack today. Very much an improvement. And I think I am picking up a slight tan.

I'm on another heavy dose of immunosuppressive drugs today, and all the antinausea meds have me pleasantly sleepy and dopey, so please forgive if I'm less than eloquent.

My new stem cells are still not yet in the building, which feels an awful lot like cutting it close, but apparently this is normal. They like 'em fresh. I'm told they have a group of retired RCMP officers that act as couriers. Thanks boys! Delivery will happen today, and I should be receiving a transfusion of about 270 million new stem cells tomorrow morning in what amounts to a pretty brief, and by all accounts anticlimactic, last step.

At least I hope delivery happens today. When I asked if, in the absence of the new stem cells, my old immune system would grow back, the answer I got back was "prooooooobably." Uh-huh.

T minus-2 (oh, that summer seemed to last forever)

Sorry for skipping t minus-3 but I was feeling pretty crappy yesterday. A bit better today after a good sleep at home. 

I'm now halfway through the radiation treatments and no real complaints, apart from slightly warm skin. I think the real effects will start hitting me tonight. I'm getting a 12 hour dose of ATG at the moment, which is an immunosuppressive drug designed to keep my t-cells from reacting to the stem cells I'll get in a couple of days.

 Radiation machine.

Closer look at the beam of death.

Actually, my biggest complaint right now is the horrific soundtrack that accompanies the treatments, so I guess I can't be feeling too bad. I get two passes through the beam on my back, then two on my front, for a total of maybe 40 minutes per session. And whoever developed this playlist should not ever do so again. I think it is supposed to relax me, but I'd really prefer something in the punk rock realm. Instead it unfortunately it opens, every time, with Abba's Mamma Mia, which will now always carry with it terrible memories.

By the time my head gets under the beam, even with eyes closed, the world turns blue. At about this time I get Here Comes the Sun (radiation playlist track 3).  Then when they flip me over and start roasting my other side some not-even-prime Bon Jovi hits the air and I get to experience some It's My Life....oh I ain't gonna live forever (radiation playlist track 6).

Things get better with some Summer of 69 and, and at least I can think of my girl waiting for me in the lounge (you told me that you'd wait forever, oh and when you held my hand, i knew that it was now or never, radiation playlist track 7).

Then the whole thing just degenerates into unrecognizable awfulness.

But I generally try to keep in my head the song my youngest sings to me every time I put him to bed,  My star keeps me company, and leads me through the night... (Yeah, which I've just now discovered is from that ewoks movie).

Speaking of feeling crappy, for those of you interested in poo, my hospital room has this awesome, handy chart.

Those folks from Bristol sure love their stools, though they should consider dropping the constant food comparisons

T minus-4

Well. Day one of stem cell transplant preconditioning could certainly have gone better.

Like all great streaks, my stellar run of going puke-free came to a horrible, thunderous end last night. I had been pretty lucky with the nausea through all this, but that has clearly run dry. That meant a late trip to the hospital as I was able to keep down neither my fluids (which is dangerous with this kind of chemo) nor my meds. I've been advised that if I fail to take in enough fluids they will have to install a "three-way catheter". What those three ways are, I will leave to your imaginations. I assure you, my imagination has run wild with it so I'm committed to hydration through normal means like never, ever, ever before.

There's a new dose of cyclophosphamide chemotherapy pumping through my veins as of a few minutes ago, along with some better anti-nauseants (emend, zofran), so hopefully today will be better.  Though the repugnant lasagna they just served me seems completely counterproductive to these efforts.

Tomorrow is radiation day one. And yep, that freaks me out a bit.

T minus-5

It's early Sunday morning and the transplant process officially starts now.

My dose of cyclophosphamide chemotherapy has just arrived. Nurse Melissa just finished stabbing me in the brain with a nasal swab the size of a fishing rod (testing for any viruses I might have) and is hooking up my chemo. 

Nurse Melissa. You know they're putting something nasty in you when there's this much protective gear.

No sleep for the next two days. To keep the cyclo from burning through my bladder, where it unfortunately collects, I have to pee every hour on the hour, around the clock for the next 48 hours. Nurse Melissa has threatened me with a catheter the size of a garden hose if I go even two hours without urinating. And that's not one of those pleasant catheters in my back or arm...

I put our youngest to bed last night - probably the last time I'll be allowed to do that for a little while - and read him "The Runaway Bunny" for his bedtime story. I'd never read it before, and it made me think of my mom and how hard this has been on her.

Once there was a little bunny who wanted to run away.

So he said to his mother, “I am running away.”

“If you run away,” said his mother, “I will run after you. For you are my little bunny.”

“If you run after me,” said the little bunny, “I will become a fish in a trout stream
and I will swim away from you.”

“If you become a fish in a trout stream,” said his mother, “I will become a fisherman and I will fish for you.”

“If you become a fisherman,” said the little bunny, “I will become a rock on the mountain, high above you.”

“If you become a rock on the mountain high above me,” said his mother, “I will become a mountain climber, and I will climb to where you are.”

“If you become a mountain climber,” said the little bunny, “I will be a crocus in a hidden garden.”

“If you become a crocus in a hidden garden,” said his mother, “I will be a gardener. And I will find you.”

“If you are a gardener and find me,” said the little bunny, “I will be a bird and fly away from you.”

“If you become a bird and fly away from me,” said his mother, “I will be a tree that you come home to.”

“I will become a little boy and run into a house.”

“If you become a little boy and run into a house,” said the mother bunny, “I will become your mother and catch you in my arms and hug you.”

“Shucks,” said the bunny, “I might just as well stay where I am and be your little bunny.”

And so he did.

“Have a carrot,” said the mother bunny.

Ouch. Right in the feels.

Shaved and Inked

Sometimes events can make our individual problems seem pretty small. That was the case Wednesday at home here in Ottawa. A very sad, strange day. Not much I can say apart from thanks, to our first responders, and to our men and women in the armed forces. I know my colleagues, both current and former, were hard at work for Canadians, and I can honestly say I never missed being at work quite as much as did that day.

While my wife and kids were in lockdown in various parts of the city, I was at the hospital meeting with the radiation oncologist and getting fitted for my radiation shielding (the lungs absorb more radiation than the rest of your body, so they give you shields to even it out).

How many tattoos do you have? Because I now have four. For some reason when Brooke told me that morning that "they will tattoo you," I didn't think that literally meant I would receive tattoos. Then when the technician said he would tattoo me, I again doubted how literal he was being. Only when the student pulled out a needle and ink and said he was going to do my tattoos did it dawn on me that something permanent was about to happen here (yeah, that's the job they give to the student). They shaved a giant rectangle out of my chest (I've since shorn the rest), marked giant crosses all over my body, and inked four dots on my chest and back. Not very visible, but a permanent reminder of my nuking. Apparently this is how they note where all my organs are. Because, of course, why use just a permanent marker when you can just tattoo someone.

The radiation doc put my mind somewhat at ease regarding the side effects of the radiation. Some will be worse than expected, but some not as bad. It's not quite the dose one would get for, say, breast cancer. It's about one-fifth of that. The significant side effects come from the fact that they're irradiating my entire body rather than just one location. So, maybe no burning, but lots of internal irritation. 

He did nothing to alleviate my concerns regarding the long-term side effects, though. I always knew I'd have to be more conscious of cardiovascular and pulmonary health in the long term because of what the radiation does to heart and lungs. And I knew that cataracts are a near certainty now, though far down the road. I wasn't quite prepared to hear that my brain will take some scarring as well. While I'm told there are no short-term issues with that, apparently my memory will start to go "a little bit sooner" than it would have otherwise. 

Whuh???

"You know how old people sometimes forget stuff easily? Well, that'll just happen a year or two earlier. No big deal." 

Yes. Big deal.

Not that I have much of a choice in the matter, I guess. The docs like to remind me of that.

Please, when I forget your birthdays 30 years from now, forgive me.

I still have no excuse for forgetting your birthdays this year, though.

TBI

I was at the hospital yesterday for a long planning session with the folks of the BMT, the Blood and Marrow Transplant program (BMT, not just a Subway sandwich anymore).

They seem to be a kind, dedicated and committed bunch, which is encouraging, and the meeting was informative, if slightly horrifying. I'll be back there next week to meet the radiation oncologist and to do some dry runs of the actual irradiation process, partly to get some measurements and partly to keep me from freaking the hell out when they drop me into the microwave for the real thing.

Our euphemistic initialism of the day was TBI -- total body irradiation. I will get a lot of TBI. GFY, TBI.

I'm frequently asked why I would be given both chemotherapy AND radiation for this -- it seems like overkill. Yes, but I suppose overkill is the idea. The reason for this conditioning regimen is twofold: to kill any remaining cancer, and to suppress my immune system to let the new one take hold. The radiation, a high-energy x-ray, is on occasion very effective against lymphoma and gets into the darker nooks and crannies of the human system that chemotherapy sometimes does not reach. Like your brain. Or your nuts. Of course, THE EXACT TWO PLACES I DON'T WANT RADIATION. I'll get six blasts over the three days preceding the transplant.

I might have mentioned this before, and forgive me for dwelling, but it comes with some charming possible side-effects: nausea, mouth sores, diarrhea, swollen and painful salivary glands, rashes, itching, cataracts, fatigue, hair loss, sterility, mild burns inside and out, secondary cancers, etc. Not so different from the chemo, or living in Chernobyl.

As a bonus, though, I might also actually pick up a tan from this, which is always a positive in Ottawa in November.

I also got the details on the cocktail of immunosuppressants I'll be receiving to keep my new immune system from waking up too quickly and rejecting the various vital organs I rather rely on: methotrexate and antithymocyte globulin.

I'll get the standard package of antinauseants (zofran) and steroids (decadron, or trimspa as I've come to know it), plus an assortment of other meds that could include neulasta (to stimulate white blood cells), ativan and maxeran (to chill me out if I need, I guess), eprex (to encourage red blood cells), hydromorphone (drugstore heroin for pain), benadryl (for the various allergic reactions to various things), stemetil and haldol (apparently in case I get twitchy...is that really a risk?), antibiotics (trimethoprim/sulfamethoxazole), antivirals (acyclovir), and antifungals (fluconazole, nystatin). Yes, antifungals. It's a thing. I am singlehandedly supporting an entire sector of the economy. Between the whole pharmacy I'll be eating every day and the radiation, something is bound to give me superpowers. I just hope they're useful, and not like Aquaman's.

I'll take part in some research along the way, because why not. I'll be a test subject to help assess when it's most advantageous to provide blood transfusions to address low hemoglobin levels (a side effect of the chemo and radiation). I'll also be wearing a heartrate and breathing monitor to see if there are earlier ways to identify the onset of infection. Because apart from the cancer itself coming back, infection remains the biggest risk in this process. Identifying infection early and treating it quickly with antibiotics is key.

Oddly enough, the biggest risk of infection comes from, of all places, me. Since the gut lining gets thinned out and damaged by the preconditioning, there's a chance the nasty bacteria in my gut gets into my blood stream.

Infection risk also means that after October 26th there will be no takeout for a while, no delivery, no restaurants, no fresh fruit, no raw vegetables, no unpasteurized or moldy cheeses, no unpasteurized honey, no more questionable basement charcuterie, no rare meats, and sadly, still no sushi. Fuck you, cancer.

Many have called me fat-headed...

When is it awesome to have an infection?

Right, well, never. But when your head swells to the size of a pumpkin and you think cancer has returned to send your lymph nodes into overdrive again, hearing your doctor say "this is weird, but it doesn't look like the lymphoma and is probably just an infection," is just such sweet music to the ears.

This all started about 10 ten days ago. It was a lovely Sunday afternoon, and I was just relaxing, being myself. 

Then by about 10PM I noticed my head was growing and I seemed to be transforming into the great John Lovitz.

And within about 24 hours I was looking like an orangutan extra from the Planet of the Apes.

My head had become alarmingly huge (okay, huger than normal). I've had weird allergic reactions to random things before, so perhaps this wouldn't usually warrant a great panic. But it felt like my lymph nodes were swelling, taking me back to the worst days of the cancer when the lumps in my neck and jaw were visible from Mars. So I'd be lying if I said the first thought I had wasn't: "fuck, the cancer is back, and just when I'm so close to getting my transplant."

The secondary concern was that my throat was slowly closing. Swallowing was getting very, very difficult. I can survive, however unhappily, without food for a couple of days, but I'm far less adept at surviving without air. Thankfully it didn't come to that.

After some steroids to reduce the swelling and some emergency CT scans the docs were able to give me some reassurances, though qualified, that my cancer was probably not active. Instead, infection became the chief suspect. Relief.

After a second flare-up following some smoked fish for dinner a couple of days ago, it seems that allergic reaction to certain fish is actually now at the top of the list of probable causes. As it turns out, I'd eaten fish when the whole thing started as well. I've never had a fish allergy before - quite the opposite in fact, as I love all the tasty fishes in the sea  -- but chemo can do very weird things to the immune system, including both eliminating existing allergies and crafting surprising new ones for you. 

Hopefully after the stem cell transplant I get a whole different set of allergies and can go back to eating fish. I can live without chocolate and swiss chard. Just leave me everything else.

Give 'im the gas!

Just before that all started, the hospital ran a few tests on me to make sure my heart and lungs could withstand the rigors of the chemotherapy and radiation that will precede my stem cell transplant. I've had many odd sensations since this whole this started, and I can add to those the opportunity I had to watch my own heart beat via echocardiogram.  

After that, they locked me in something that can only be described as gas chamber-like, and tested my pulmonary functions. 

Happy to report that the heart and lungs are strong like a horse's, which I'll say I'm a little proud of given that they both took a beating from the lymphoma. I had a tube in that fucking lung two months ago.


Transplant News

Finally, I've got transplant news. 

Looks like on October 26th I will begin the preconditioning phase of the transplant process. 

That means two days of intense chemotherapy, which will apparently be far worse than I've had so far. 

That's followed by three days of full body radiation, which I've not yet had. 

Then I receive the transplant itself on October 31, which is itself actually the easiest of the procedures. 

That's followed by a month or two of extreme infection control and daily hospital visits to monitor my status (they really want me to do this as an outpatient, which just doesn't seem like a great idea). Then I get to slowly re-expose myself to the world and build my new immunities over the subsequent months.

I'm looking forward to finally getting it done... but I am not looking forward to it. Needless to say, November will be an unpleasant month. I've seen this movie before. Nausea. Fatigue. Full body pain. Leaving a trail of dead skin a meter wide everywhere I go. Skin feeling like it will tear every time I move. Not being able to eat. Not seeing people. Not being able to play with the kids. Plus, the charming new experience of radiation burns, on the inside as well as the outside. 

The odds of this whole thing being a success are less than I thought, and unfortunately, far less than I'd hoped for. 

But as high risk as it is, it's a chance to be rid of cancer. It's one not everyone gets. And we take what opportunities we get and make the best of them.

Light the night

All things considered, I'm pretty fortunate. Sure, one could complain about illness and the lousy luck early on, but I've caught some breaks in the last couple of months. Some folks have it far worse than I do, and without the kind of support I've had. 

The Light the Night walk is an effort to raise awareness of blood cancers and to raise funds for research and local support programs.  It also serves to remind people suffering from blood cancers that there is support for them out there. There are fundraising walks happening across Canada in September and October, and here in Ottawa October 18th. I'll do my best to participate if I'm not in the hospital.

My big sister is taking part in Winnipeg on September 27, a sweetheart thing to do. As a nurse who's seen and done all kinds of things, Trish has been a big help in guiding me through an often impersonal and indifferent health care system. Early on in this process, she made me kick down some doors, getting me into the system faster than the system wanted me to. And in hindsight, I'm lucky she did. Thanks sis.

I just had my fifth dose of the Brentuximab, and it's still working, and still the most awesome drug I've ever taken (well, maybe not quite as awesome as the hydromorphone injections or the steroid that let me eat six meals a day). The side effects are building, but again, it's pretty mild stuff given the alternative. The neuropathy (kind of a tingly numbness) in my fingers and toes is still increasing, and my joints are like the tin man's -- sore when I get off the couch, but fine once they get oiled up. My blood pressure, on the other hand, keeps getting better and better (so it probably had nothing to do with the Brentuximab and more to do with the kids acting like lunatics), and my blood counts - hemoglobin, platelets, white blood cells, etc -- are still in the normal range. I think this was the last treatment (though I've said that before). And no, I'm not getting paid by Seattle Genetics to push their magnificent products, but I'm including this stuff in case anyone in my position is searching for details and experiences about the drug. 

It appears that Montrealer Mai Duong finally found a match for her stem cell transplant. Great news, and a positive outcome in her hard fought and important awareness-raising campaign. Check out the latest on her here. She includes some interesting information on donations and registries around the world. Just another example of how these stem cell and cord blood donations can literally be life-saving.

At my end, we recently met with my transplant team to get an update, and it was a bit of a mixed bag with some harsh realities settling in. More on that later, but at least it was great to hear this will in all likelihood proceed sometime in late October or early November. Out of the approximately 22 million folks on the registry, my one best match has apparently agreed and already sent in blood for additional testing. As long as he/she doesn't get cold feet, this is a go. Whoever you are, wherever you are, thank you. I wish I knew who you were and could thank you directly.

Remission

Is it counterproductive to spark up a cigar and crack a beer when your doctor tells you you're in remission?

Yeah, probably. 

In a continuation of the good news from Friday, my hematologist/oncologist told me this morning the rest of my scans looked good and that she considers me to now be in remission. Even she seemed relieved, shaking her head at the thought of how sick I'd been over the past few months.

Hell, even my blood pressure was normal this morning. Apparently the cure for my high blood pressure is to drink one espresso right before measuring it, consume several hotdogs the night before, and probably most importantly: be told to stop worrying about my blood pressure.

It was also the first time I asked my doctor what stage my cancer was at. I guess waiting months to ask is odd, since that's one of the first questions people ask me. But honestly, I never cared. I figured it was probably at least a stage three, but regardless of classification it was obviously pretty bad and I was going to need serious treatment and a lot of luck. So what difference did it make? 

But on finding out that it was mostly gone I was all of a sudden curious -- and she confirmed that it had been stage four (due to involvement of my pancreas, lungs and skin). 

I'm dying to get back to work and to just be normal again, but I'm still not allowed. Rest and recovery continues to be the doc's orders and it's key that I avoid infections in these pre-transplant days. Because all this good news continues to unfortunately be tempered by the reality that I'm highly likely to relapse, and probably quickly, without a successful stem cell transplant (the Brentuximab is brilliant, but not curative, and those with large cell anaplastic lymphoma typically relapse, sometimes even after the transplant).

Anyways, I'm eager to meet with the transplant team this week to get the plans rolling.

Silver linings

A good friend recently pointed out to me that if there is one silver lining to the cancer adventure, it's that I've had the opportunity to connect and re-connect with friends like never before. It's true. People talk about how some friends start to avoid them when they get sick, and I'm thankful that I've experienced the opposite. I'm very lucky to have great friends that want to hang out with me despite my deathly pallor and stories of lung catheters.

Also, I am thinner, less hirsute, and seemingly no longer allergic to blueberries.

Plus, waiting for my CT scan yesterday I got to catch up on my reading with this gem, the June 1993 issue of the official magazine of Star Trek: Deep Space Nine.

Sure, Major Kira was kind of foxy and all, but come on... Nineteen Ninety fuckin' Three! That's older than OK Computer. Kurt Cobain was alive when this was published. I've hired students younger than this magazine. Folks, don't just donate your stem cells, donate some magazines to the Ottawa Hospital, general campus.

And, finally, I got some unexpected good news from my GP today. I wasn't supposed to get my CT results yet, but she got two of my three scans back (abdomen and pelvis, chest will come in next week). It turns out that my giant spleen has shrunk, my pancreas is showing "no residual measurable disease", and, at least as far as my abdomen goes, I'm showing "significant improvement and treatment response". There's "near total resolution" regarding my lymphatic system and "no newly developed lymphomatous involvement of the abdomen and pelvis". Some of that reads like gibberish, but the bottom line is that things on the inside are even better than I'd dared to hope for, and this gives the stem cell transplant a better chance of success. I hope the rest of the scan shows the same. 

I will celebrate by demolishing some pizza. Yes, I've already abandoned the ketogenic diet after just two weeks. Something to do with the lack of peer reviewed research, no real positive case studies, and an absence of pizza in my life...

That's it. People tell me my blog is a downer so I'm just sharing my glass half full kind of day.

A word from our sponsor, Seattle Genetics

For a guy with nothing to do, things have been a bit busy. There's my excuse for the lack of updates lately.

I'd love to report that I can no longer feel any swollen lymph nodes on my body, but the last of them just refuses to go away. I mean, it's still not growing, and hey, it does seem to be the last one, so I shouldn't complain. But it might have adopted some of my stubbornness. My next CT scan is in a couple of days and it will tell me the full story of what's happening on the inside. I'm pain-free, have for a while been absent the stabbing sensations in my lower spine, and am exercising again, which is all good. So hopefully the scan just confirms what I'm feeling.

From what I can tell the magical Brentuximab is still working. I wish it was a first line treatment for this kind of cancer so folks could avoid going through painful chemos that are unlikely to work, but I suppose the $10k per dose price tag of the brentuximab relegates it to an option of last resort. Hopefully that all changes once the medical community is able to study the drug's effects in the longer term (and hopefully I don't grow any horns or tails from it).

Brentuximab works like a smart bomb, targetting very specific proteins that exist in tumour cells and dropping a toxic payload after it binds to them. Meanwhile, it wreaks (relatively) little havoc on the rest of my body. Contrast this with the first two chemotherapies I tried, which were less targetted and more like a napalm carpetbombing that obliterated a whole host of cells, tissues and processes in my body (my fingernails still look like they belong to something that crawled out of a swamp this morning).

I had my fourth treatment of the Brentuximab a few days ago. It wiped out my energy for a few days this time, and I've got a tingling sensation in my toes and in a couple of fingers. That's not uncommon, but considering the alternative it's a small price to pay. If the numbness spreads the hospital will cut my dosage back in order to prevent any permanent nerve damage, but I say full speed ahead. I won't need fingers and toes if I'm dead.

That said, my hematologist thinks that might've been my last treatment anyway. The stem cell transplant team at the Ottawa Hospital has apparently found some closely matched donors for me on the international registry -- not 100% matches, but matching in 7 out of 8 HLA markers. Those are human leukocyte antigens: proteins in cells that your immune system can use to determine if cells belong or need to be rejected. In a transplant situation, a patient's HLA markers are compared with a donor's, and if 8 out of 8 markers or 10 out of 10 match, it's perfect. The better the match, the less likely you are to face a risky graft-vs-host rejection situation (although sometimes that can actually be good in terms of the new immune system rejecting any remaining cancer). So it is slightly disappointing to not have a perfect match, but as some people don't find matches at all I'll consider this lucky. I think the individual donors still need to be contacted to make sure they remain healthy and willing, so it's not a done deal yet, but things seem to be on track for an October transplant. I'll find out more about the plan next week.

Bethematch.org has a good description of this stuff. Once again, I'd encourage everyone to check it out or the Canadian equivalent at onematch.ca and consider being a donor. Think about it: Brentuximab is likely not a cure, just a temporary treatment, so this transplant might be my one shot at a permanent cure for this disease, and out of millions of people on the registry there are as few as two matches for me - two people who don't know me, but who have signed up for this regardless. You might be the one match for someone else out there.

They won't tell me where the possible donors are from -- they like to tell everyone "they're from Cleveland." I might have the option after a year or so to find out. I wonder how much it costs to send a case of beer overseas.

What else is new? Well, it's been a few weeks since I got my lung catheter removed, and I couldn't be happier. I no longer have to sleep with something that feels like a spoon jammed in my back. Showering is once again pleasant and my lungs remain clear. I'll spare you the story of its removal, but it did involve a not-so-awesome (but kind of awesome-in-hindsight) kurosawa-esque splash of blood.

Finally, I saw a naturopath last week. I had some reservations going in. Given the effectiveness of my current pharmaceutical experience I don't fully buy in to the benefits of alternative treatments, especially considering the junk science around cancer and nutrition that pollutes the internet. Nevertheless, it was a positive meeting. I learned a bit about the functioning of my body and how healthy and unhealthy cell growth works. After some discussion, he has me trying out the ketogenic diet which has (apparently) shown (supposedly) good results in (maybe) limiting cancer growth by limiting glucose levels and the development of "insulinlike growth factor 1", or IGF-1, which is an important hormone to support growth. Unfortunately, it also is key to tumour growth. So yeah, I'm basically on a low-carb, adequate-protein diet. I'm not really confident that this will have any impact on the cancer, and there seems to be no peer reviewed research on it, and it's kind of counterintuitive, but A) I feel good and B) it can't really hurt at this point.

But, my new hobby, baking bread, was ill-timed.

I'm realizing that most of the "keto" community on the internet has absolutely no idea what good food should taste like, so I might have to start putting some recipes on here.

If I die during the transplant having spent the last month of my life eating this low carb garbage instead of pizza and focaccia, I'll be very upset.

"Be here now"

I had another Brentuximab treatment a few days ago, and things still seem to be going well. I can still feel two swollen lymph nodes that are hanging around, but I think they're shrinking. At the very least they are not growing. 

I've now gone more than six weeks without having to visit the emergency room or stay overnight in the hospital. Believe it or not, that's a personal record for the last four or five months. On a recent visit to the doctor's office, I saw a doc I'd not had before and she said she was happy to finally meet "the famous John Carta" who kept getting admitted to hospital with his nasty non-hodgkin's lymphoma and mysterious fevers. Crappiest fame ever. I hope someone at least writes a paper on me.

Side effects from the Brentuximab still seem pretty limited. My muscles and joints have ached for the last few days, but who knows, that might also just be from my muscle weakness coupled with increased activity from feeling better. My blood pressure has been a bit too high recently, but again, that could be from a host of different things that have gone on with me over the last while (including a Five Guys Burger, a Hintonburger, and a visit to Smoked Meat Pete's). But for now I'm off coffee, again. Green tea is a poor replacement.

No word from the transplant folks about whether a match has been found, but there's still time as long as the Brentuximab keeps doing its thing.

As part of my ongoing Netflix therapy, I recently started watching the Spartacus TV series. In a lousy coincidence, it turns out that Andy Whitfield, the actor who played Spartacus in the first season, was diagnosed with a very aggressive non-Hodgkin's lymphoma at the end of filming. He was never able to return to the show, and died about 18 months after his diagnosis.

I don't want to suggest that any one death is more tragic than any other because of celebrity. But I'm sappy these days (I'll pretend it's a side-effect of meds), and he was my age, with kids of similar ages to mine. And, admittedly, I found it heartbreaking that his last words to them were that he had to go to sleep, his body didn’t work, that he was like a butterfly with broken wings, but he would always be watching over them. Now his kids say "hi dad" every time they see a butterfly.

As an awareness-raising activity, he invited documentary filmmaker Lilibet Foster to follow him through treatment. The film should be out sometime soon. You can check out the trailer here. 

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.