A Final Word

This blog post is written by John's wife Brooke. 

I never wanted to write in this blog.

Last summer, after having success with his cancer treatment, John started scouring the internet, looking for blogs written by people who had had similar experiences. He was staring down a long, dark tunnel of uncertainty and I think we both just really wanted to read that other people had been there, done that, and were living to tell the tale. John would often remark that he would be reading a blog, getting to know that person, rooting for them... and then...the last entry would be written by a bereaved husband or wife, boyfriend or girlfriend. The person left behind.

I am now that person and I am writing John's last entry. John died in the early hours of the day, after a long string of transplant-related complications. There was a series of problems that led to this, starting and ending with infection. For the immune-suppressed, the hospital is a minefield of disease, with dangerous bugs lurking in all corners. We just couldn't stay out of there long enough to keep him healthy.

It actually hurts to breathe, knowing hes not here. My stomach and my heart are painfully tight, my teeth hurt from clenching, my body shakes like a leaf. I had to tell two little boys with big eyes that their Dad was never coming home. To say this feels cruel, unfair and absolutely heart-wrenching would be an understatement. I read something in a book the other day, that said "we are all time-optimists". And I agree. I thought there would be more time to say and do all the things we wanted. He was only 38.

For the last 24 hours, my mind has been flipping like a Rolodex through every memory I have of him, the good times and the bad. It was like I was trying to remember every minute, every feature, before he was gone.  My memories are tangled up in cancer and crisis, but when I close my eyes, what I want to remember is...

John bringing me a perfectly poured cappuccino every morning, while I dressed for work.
John spending 12 hours on our deck, lovingly smoking a piece of meat.
John calling me "Brookems" which I hated at first and then loved.
John patiently helping Alex with his homework and making him feel smart and proud.
John singing Luca bedtime songs, which resulted in us having a three year old who loved The Pogues.
Sharing a bottle of wine on the couch and being perfectly and blissfully in love.
John asking me, every day, if his tie went with his shirt.
John testing, re-testing, and re-re-testing the perfect pizza dough recipe.
The feeling of his chest hair. I know this is weird, but I loved to rest my head there and when the chemo took it all away, I was devastated.
Listening to John downstairs playing video games and drinking scotch with a friend, while I curled up with a book
John cooking pasta sauce in his God-awful camouflage shorts and barefeet.
Listening to John argue endlessly with the cable/internet companies. His extreme stubbornness always made me laugh, except when it was used on me.

All of these little things and a million more, made up our life. And now, without him beside me, I am the one facing down a long, dark tunnel of uncertainty.

I want to thank all of the people at the Ottawa General Hospital who looked after John for many, many months. The staff in the Bone Marrow Transplant Unit and the Intensive Care Unit have been nothing less than amazing. They treated all of us with kindness, dignity and great compassion.

I want to thank all of the family and friends who are supporting us through this nightmare. A dear friend referred to this the other day as "bench strength", and she is right. I have basically existed on the kindness of family and friends the last few months, and I am so appreciative.

I will end this post how I should have started it: by saying how much I love my husband and how special he's been to me in the last few months. I was there at the beginning of his fight and I was there at the end, and he never stopped being amazing to me.  I want him back and it can never happen and so I will never be the same. Ever since I met John, all he ever wanted to do was take care of me. He wanted everything to be better, safer, tastier. I wish I could have made things better for him.

Thank you for reading Chemo Brain.

There's No Place Like Home

After another long admission of about three weeks, my leaves of absence went well and I've finally been discharged from the hospital. Again.

I've been down this road before, but really, I hope this is the last time. Barring major illness or catastrophe, it should be.

It feels great to be home. Playing with my kids. Hugs every day. Sleeping in the same bed as my wife.  I'm already getting stronger and steadier, packing in calories, moving around more.  Don't get me wrong, I still move around like a drunken, wobbling disaster, I can't stand for more than three or four minutes at a time, and can basically accomplish nothing that can't be achieved from a seated or prone position, but it's getting better.

And in a couple of days I'll finally be starting the Ottawa Hospital's excellent rehab physio program - an intensive, full time, affair. It will be rough, but much needed to restore all I've lost from the steroids and from the generally sedentary period in the hospital.

I'm also off almost all of my meds, too, which feels great. I'm down to three pills: Ursodiol for my liver, Acyclovir for shingles/chicken pox, and Pantoloc to protect my stomach from all the meds. Though as I'm writing this I'm questioning the need for that last one now...

Cancer Risk Assessment

Cancer Care Ontario has this great guide for assessing and lowering your risk of various cancers: breast, colorectal, cervical and lung. Please tell me if I ever get preachy, but as a guy with a randomly occurring, unpredictable cancer that has no real risk factors, it's important to assess your risks for these kinds of cancers when possible, and to talk to your families about it. Have a look. 

Cancer: the Emperor of all Maladies

I recently mentioned the Ken Burns/Barack Goodman upcoming PBS documentary, Cancer: the Emperor of all Maladies, and I highly recommend the website and short video profiles. But the short I Loved it All, particularly moved me, and absolutely crushed me. I tweeted the other day about how these days everyone's a photographer. But there still remains an art to it that rests in rare, gifted hands, and that's telling moving stories through nothing but stills.

FOLLOW US ON TWITTER

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A glass half full kind of day

As a first bit of good news, I'm getting what they call a "leave of absence" tonight to go home and see how I can function. I'm excited to see my family and sleep in my bed. I'm also a bit scared given how weak and unsteady I still am, but I guess you need to get back on the horse sooner or later. 

Funny, I can leave the hospital but I can't leave my room to walk around the floor. That's because I developed a bit of a cough the last couple of weeks. Nothing major, and I figured it was some kind of irritation from the awful dry air in here.

I mentioned it to the docs a week or so ago, and they were unconcerned. But late last week it clicked in their minds that I could be contagious, so they've put me and my room under "droplet" conditions. Anyone coming in must wear a mask, and I am forbidden from leaving my room. There are many immune-compromised patients here, so they take no chances.

Then they pulled out The Swab. The Swab is roughly the length of a pencil. And they stick every last inch of it up your nose until your eye feels like it's going to pop right out of your head.

The Swab showed I have parainfluenza, which is not a real flu, but rather more like a very minor cold. I've rejected the prescription of Tamiflu, because it's just a damned cold (see previous blog posts about questionable over-prescribing).

But the docs decided to send me for a CT scan to confirm it was this virus in my lungs and not something more pernicious, like a fungal infection. I was going to reject the scan as utterly unnecessary, but confirming there is no fungal infection actually gets me off my the last of the daily IV drugs I need to take, so it was worth doing for that reason alone.

Results were good.

No fungal infection.

It also confirmed my ascites, the massive fluid build-up in my abdomen and under my right lung (from the liver and kidney problems), is rapidly resolving. 

My kidneys are also basically back to normal functioning. Liver is taking longer, but it's getting there.

And, as an unexpected bonus, it confirmed no cancer activity.

I didn't expect any. Still, that was an opportunity to spot something, and it didn't. These lymphomas can sometimes come back quickly, and I'm obviously grateful mine has not. Four months post-transplant, I like that result. 

My odds remain what they are, basically one-in-three that the cancer gets cured. But if I can make it to two years cancer-free, the most experienced Hematologist here tells me I'll be free and clear of the Non-Hodgkin's Lymphoma for good. I've now eaten up one-sixth of that timeline. I'm the guy jumping off a six story building, and as I pass the windows on the 6th floor the folks inside can hear me shout "so far so good!" Just catch me at the bottom, Brookie.

Whether or not the two year time frame is accurate, I do not know. I trust that doctor's experience. But it's a goal. And I know there is always a lot of danger for those who have been through this of developing other cancers later in life, commonly, leukemia.

The Sword of Damocles by Wenceslas Hollar

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Memory

Memory is a funny thing

Ever wake up to a memory and think "did I dream that? Did that really happen?"

Of course you have, we all have.

I still get flashes and recollections of things from when I was extremely sick and out of it from the liver and kidney problems.

These are not good memories.

Caution - Gross tale

The worst one struck me the other day.

Apparently, while I was very sick, I was having gut problems, a likely symptom of graft-vs-host-disease. You'll recall this is where the new immune system rejects organs in you, its new host. A common, and eventually harmless, when treated, manifestation of gvhd. But like aliens armed with anal probes, I was whisked away by a pack of gastro docs for the most invasive colonoscopy in the history of colons.

Things were shoved and penetrated, biopsies were taken, I was violated in a flurry of activity. No dignity in the life of a patient.

But what's so interesting to me is how my mind completely shut this memory down until recently.

Memory is a funny thing.

Quick hit on Brentuximab

Many wind up this page looking for information on and experiences with the drug Brentuximab vedotin (or by its commercial name, Adcetris). This drug targets my systemic anaplastic large cell lymphoma very directly, and effectively saved my life. It put my stage 4 cancer into remission in just a couple of months.

Well, its manufacturer, Seattle Genetics, recently presented results showing very positive survival rates at four years among those who achieved remission by using Brentuximab. Good news.

Bits, bobs, other things

You can now follow @Chemo__Brain (double underscore) on Twitter. Just click the new follow button on the right side of the blog.

If you get a moment, please check out the story of Ottawa's young, courageous Phoebe Rose.

A fascinating essay from scientist Oliver Sacks on finding out he has terminal cancer.

And master documentary filmmaker Ken Burns has a new documentary coming out in March 30 on PBS based on the Pulitzer Prize winning book, Cancer - The Emperor of all Maladies.

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The Incredible Shrinking Man

I've lost 60 pounds in the last three weeks.

Now, that sounds terrible, but it's a really good thing. It means I'm finally making progress in conquering the ascites. That's the crazy accumulation of fluid in my abdomen, an ongoing gift from my earlier liver and kidney failures.

Not only does this mean my body, and in particular liver and kidneys, are steadily improving, it has vastly improved my mobility. Imagine being at the weakest point in your life, and someone throws a 60 pound belt on you. Yeah, that's where I was at. 

At 168 pounds now, I am a bit lighter than an MMA welterweight, which was always my fighting weight anyway. In grade nine. 

There's still lots of fluid in me, and I've lost so much muscle mass, I'll admit I'm a bit worried about what my actual body weight is. Despite an absolutely voracious appetite - I probably eat about 7 protein and carb packed meals every day- my little chicken arms and legs suggest I might literally be a lightweight at this point.

But, with the fluid getting under control, it also means I'm more likely to start sooner in the intensive rehabilitation program, which I really need to help me rebuild all the muscles lost from steroid use and the hospital stays.

I'm actually now off the steroids entirely, which is great. Though on top of all else, as an extra kick in the pants, the steroids gave me a hopefully-temporary diabetes. But this seems to be getting under control now as well.

I need to throw out special thanks to my physioterrorist, Becky. She kicks my ass every day. But she keeps me going and getting stronger. People like this make a big difference in one man's life.

Becky, my wonderful, evil physioterrorist, with an innocent smile.

TEN PERCENT

If you have a moment, check out the story of Mark Newman, diagnosed with a rare melanoma and given a ten per cent chance. 

Stories like help me accept my one-in-three shot. Unfortunately, some people don't even get my odds. 

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How to improve your hospital stay in one easy step.

It's delicious. 

It's actually pronounced si-rotcha.

Put it on a keychain.

And it is essential for turning your sad but perfectly shaped hospital food into something happier.

And a word on drugs.

I'm having a slow awakening regarding the drugs I'm getting as part of treatment.

Antivirus. Antifungal. Antibiotic. Immunosuppressive. Anti graft vs host. Others. They're all important to someone building an immune system. Or are they? When does prophylaxis take precedence over treatment? Best to avoid pneumonia before getting it, right? That's just logical.

Or is it?

Take, for instance, the anti pneumonia drug I was just started on. Quick research shows it shouldn't be taken if you have liver problems. But I just went through the mother of all liver problems. So what are the odds of me getting pneumonia vs the odds of this drug messing with my now-healing liver and kidneys? Too frequently we are told only what the benefits of a drug are while those treating us neglect to articulate and explain a list of side effects longer than my leg. But really, that's the patient's responsibility to always inquire.

Obviously the docs take great care to not put patients in danger, and I'd never suggest otherwise. In fact I have to rate the doctors I have here as nothing short of fantastic, attentive, caring, intelligent and life saving. There's a delicate balance between an effective drug and its side effects and they do their best to ensure you stay on the right side of that scale.

I'm now starting to decline and question certain drugs. Bad idea? Maybe. Probably. But I'm also starting to understand how long term cancer patients find themselves on the road of crazy diets, all juice regimens, and mistletoe treatments. I won't go down that path, but I'm starting to see how it happens.

There's a lot of over prescribing, under explaining, and trial and error. And at a certain point when overcome by nausea, sweats, tremors, or inexplicable shakes and malaise, you just start to realize how inexact this science is.

And then they serve you a fuckin' salisbury steak.

A word on steroids

I wish I was on the same steroids Anderson Silva is on.

Unfortunately he got the ones that make you faster and stronger. I get the prednisone and the cortisone.

The prednisone and the cortisone do pretty wonderful things at the start. For instance, in my case they were key in fighting graft versus host disease.

However, take the prednisone or the cortisone for long enough and side effects start piling up. A quick internet search shows the horrific side effects these steroids can have. From depression and emotional trauma to muscle wastage and osteoporosis. I might have mentioned this already, but I find myself suffering from the muscle wastage in a huge way. Far worse than at any point previous.

Imagine sitting down on your couch and then the depth of panic when you simply cannot get off it. That's happened to me. Or not being sure you can even walk to your car safely to get to the hospital. Or the simple act of walking to the bathroom becoming a kind of high wire performance in which you just hope you don't fall and become some kind of sad Internet story about a dude that cracked his skull on a toilet bowl.

The weakness is really beyond imagining.

The hospital has just put me on a hardcore rehab plan. It will be a long, long process to get back to normal.

And just so people don't get too worried, overall health is actually pretty good. I'm just weak as a puppy, but my liver and kidneys are continuing to heal. And the transplant itself I think could only be described as a success. I am assured that even though this will take a long time to fix I will be back to normal.

I continue to appreciate all the good wishes I'm getting, all the good vibes people are sending me, and all the help people are giving my family. The support we've gotten and continue to receive is of immeasurable value to us. I simply cannot thank everybody enough but I will try to find a way in the near future. I promise it will involve a giant roasted pig, a lot of smoked meat and other delicious things.

Part of the fight now will be just dealing with the boredom of being in the hospital. But my days should be full of exercises and rehab. Lots of hospital food in the future. I hope today's mac and cheese is not a sign of things to come. If tonight brings Salsbury steak imma jump out the window.

Oh, if you're in the mood for something gross, I have a new tube installed. Not unlike the lung tube I had during the worst of my lymphoma, this one is in my stomach and allows my nurses to drain a ridiculous amount of fluid I'm building up my stomach from my earlier liver problems. Consequently, I have lost approximately 20 kilograms in the last week. Crazy. Take that, Jenny Craig.

And the clouds keep rolling on in

"Well I barely woke this morning on the cold ground by the sea.
And I opened up my eyes and those black clouds are all I see.
And I wonder if someone's up there,
If the black clouds can see me,
And the clouds keep rolling on in..."

I watched the JC Chandor and Robert Redford movie All is Lost the other day, and yeah, couldn't help but commisserate with Redford's challenges throughout. Every day a triumph followed by disaster. No matter how clever or how tough, luck is luck and the world will do to you what it wants.

Not unlike this increasingly ridiculous transplant process.

My blood clot in my liver is mostly gone, which is nice, but I might be dealing with the start of the fabled graft-vs-host rejection issues. I don't hate the idea because it can lead to a better fight against the lymphoma, but as one doc put it they can't turn off the switch, so there are too many risks. We'll keep an eye on that.

My steroids right now are my biggest beef because they're doing decidedly un-steroidly things like making me weak and tired. They also appear to have given me a hopefully temporary diabetes requiring insulin and all. I miss the steroid that made me a strong like a horse.

On the other hand my ice cream maker is doing some good things and Brooke just made short ribs. And the world is a far, far better place with short ribs in front of you.

Day 65

Seems I'm apologizing a lot these days for infrequent posts, but my health's been a bit of a mixed bag and it's sometimes tough to work up the energy to make one of these posts.

I'm still a bit preoccupied mentally with what I went through with my kidneys and liver in the last 30 days. The organs are all on the mend now, but it took me a while to grasp just how close to death I was. Just a day or two, really, of things continuing as they were and I would've been gone. Going into this process I prepared myself for that reality, but this was different. I wasn't conscious. I wasn't aware. My liver stopped working and I was sliding away, and I came awfully close to just leaving and not knowing it. That's not easy to take.

Thankfully I'm back home and trying to get back to normal. I've been left with almost 20 excess kilos of fluid in my belly that we're trying to get rid of, so now I just look like a fat vampire.

Oddly enough, the new immune system seems to be doing great and I've had no problems there, which is a nice bit of luck. The whole liver and kidneys thing just turned out to be bad luck. The head of the transplant program said in 23 years I was the first guy to ever go through that. Once again I'm a medical curiosity. Never a good thing.