Tumour Tatt

We asked Doc if it was okay for me to get a tattoo over my left chest to commemorate the removal of Kuato and she was surprisingly supportive. Apparently, it is not uncommon, though a Google search turns up mostly pink ribbons (and having learned a little about the insidiousness of Breast Cancer I completely understand why).

What I am trying to do know is figure out what I want and what would be fitting. I'm looking for comments and suggestions. Here are my ideas so far:

Spider

A play on my last name combined with (like a snake on a caduceus) the dual symbolism of healing and poison. I was thinking of a knotted spider sitting on a web that stretched between my many scars. M is not a fan of this one, saying it would be gross and morbid.

Tsuba

The guard of a samurai sword. The story I heard was they were made to be works of art so that the last thing your opponent would ever see would be beautiful, but I like it more for its actual purpose as a protector. What to put on it is the question. The common battling dragon and tiger motif is one idea (also happen to be M and my Chinese horoscope signs), as well as possibly combining the spider or kraken ideas, though I haven’t found a good model yet.

Kraken

This one I keep coming back to. To me it represents mystery and loss. The mystery of how I got cancer (it doesn’t run in my family) and the ever constant threat of its return. Plus the permanent damage it and the chemo have wrecked on my body and all the losses that have come with that. But to me mystery also represents hope and the future; there is so much we do not know about this limited reality in which exist. It is the desire to unlock those mysteries is what pushes us forward and makes us grow, both as individuals and as a species.

It also happens to be a really kick-ass rum.

OTHER TATTOO IDEAS

As some point I am getting a version of this:

though I don’t see it on my chest.

And I want the line, Still is still moving (Willie Nelson), maybe on my forearm.  

My Own Fucking Fault

It is my fault I got cancer. I don’t mean that I did it deliberately or that I wanted it to happen, but cancer is a glitch in the body’s normal system of cell division. The resulting cancer was as much a part of me as my lungs, my eyes or my heart.

My body, my fault.

This is a thought that occurred to me sometime about halfway through the chemo when I was looking for someone to blame. Best guess is that the medication I was taking for my Crohn’s Disease may have triggered the cancer, but ultimately I was aware that there was a one in a thousand chance of developing cancer associated with the drug and I took it anyway.

My fault.

Then I began to think of everything else that had gone wrong in my life and kept coming back to the same conclusion; I could blame other people and make all the excuses I wanted, but ultimately it comes down to one very simple thing …

It was my own fucking fault.

When we’re babies almost nothing is our fault. We at the mercy of our caregivers, our environment and a world we cannot hope to understand yet. As we grow we take on more and more responsibilities until sometime in your late teens when pretty much everything in your life is now your responsibility. That is not to say you won’t make some colossally stupid decisions along the way, but that is okay; screwing up is a crucial part of growing up. Fuck, it’s a crucial part of being a human being. We don’t ever stop making mistakes.

But if you are truly honest with yourself, almost everything that happens to you is your own fucking fault. Whining that it was someone else’s responsibility or screw up is useless at best and sheer cowardliness at worst. Either way, nothing gets done.

It sounds bleak, but there is a very powerful upside: if it is your fault, you can fix it. And if you can’t fix it, at least you will learn from it, which is the whole point of fucking up in the first place.

The Incomplete Diver

In retrospect I was probably a terrible diver. I could never quite figure out the correct weight I needed for buoyancy in salt water and as a result, I usually ended up slowly sinking to the bottom. It might not sound like much, but buoyancy is a critical skill for divers, both for the prevention of stuff like the bends, and for the protection of the plants and animals that don’t appreciate some idiot in a hundred pounds of gear crashing down on their heads.

But I love the smell of neoprene and salt water and had I had always planned to getting into it more seriously. I was getting close too; through ebay, kijiji and some generous donations, I had almost a complete kit. The only thing left was a couple of good tanks and then I could go whenever I wanted and all I’d need was an air-fill.

And therein lies the rub.

Chemotherapy fucks you up. My hair didn’t even start coming back until two months after my last session. It’s coming back gray and I’ve still got some bald patches that only my wife knows about. My thumbnails look like they’ve been run over by a bulldozer and by the end of the day my feet and hands feel like they’ve been hooked up to a car battery. Nothing too serious, but I GOTTA get a decent pair of shoes.

But it also took a weed-whacker through my lungs. I’m now at a permanent risk for pulmonary fibrosis and oxygen toxicity; my lungs can turn to tissue paper at any time or cause a buildup of oxygen in my tissues leading to everything from delusionary euphoria to being dead.  As a result, breathing compressed air is not such a good idea and the doctor even recommended I get a medical alert bracelet, which makes me wonder how often she thinks I like to suck on a hose.

I sold the last of my diving kit this morning. It was hard to let it go. Harder than I thought it would be. If you've ever thought about trying it, I cannot recommend it enough. I've had some amazing times and met some incredible people, and then I realize all the amazing things and unfufilled plans that I will now never get to see or do. It sucks and it is not fair. But cancer sucks and as for fairness well, spend some time on a cancer ward, or any hospital for a day and talk to talk about life being fair. It will leave scars, and I’m not just talking about the zipper strip down my chest or my extra belly-button.

Fuck it, there is no sense hanging on to the things you will never use. I can’t dive, but from a certain perspective that seems like a fair trade-off to not dying.

Besides, I kept the wet-suit. Next summer I am thinking about taking up surfing.

The fine line between replicating cells and cancer,

expained. via io9

My New Bellybutton.

The surgery was not nearly as fun as the made it look in the brochure. I actually do have a brochure; it is what they give you nowadays instead of having a surgeon actually come out and talk to you. There is large rack in the surgical ward filled with similar brochures covering everything from appendicitis to open heart surgery and eye-removal.

I don’t remember much, just them jamming the epidural between my shoulder blades and the anaesthesiologist saying goodbye, but from all reports everything went spectacularly well. They pulled Kuato screaming into the daylight and sliced him up on a laboratory plate. He measured about the size of my fist and according to the report, contained muscle, lung and keratin fibres. Extreme teratomas have also been known to have hair and proto-teeth, which makes them fun fodder for freak-o-the-week medical shows, but if Kuato said anything about his treatment, they didn’t tell me.

As one friend said, it doesn’t matter if he contained pure plutonium, what matters is that they got him out clean. That they did and the worst case post-surgery scenarios (not being able to talk properly, partial paralysis of my diaphragm and the tumour having invaded nearby organs, etc) are now behind me. I do now have an extra bellybutton, which was not a scenario they covered in the brochure.

I’m not 100% out of the woods yet though; they are going to run the mangled pieces of Kuato under the microscope to check the location and percentage of the remaining active cancer cells. Depending on those tests, they may determine that I need another round or two of chemo just to make sure that no active cancer escaped during the surgery. Even if I get the chemo it is more of precaution, but I would really rather not. It seems a shame to go through all that again just as my hair is starting to come back in.

In the meantime, it’s been almost a month since the surgery and also two since I’ve finished chemo and I’m starting to climb the walls at home. The list of do’s and don’ts after the surgery was pretty long because they don’t want me pulling at the rabbit wire they used to knit my sternum back into place: I’m not allowed to lift anything, pick anything up, let the cats sit on me, walk the dog, drive, mow the lawn, sleep on my side or take a bath for at least six weeks. I’ve never felt so much like a sick person in my life than watching my wife and mother-in law garden all weekend while I sat on a chair like Grandpa at Shady Pines.

Chemo's Last Laugh

I stink. I don’t mean just because I just walked the dog wearing four layers of clothing on a warm spring morning (I get cold), but there seems to have been a fundamental shift in my body chemistry. I don’t smell like myself anymore.

The chemo had one last laugh sometime between the end of my treatments and the surgery. Nothing serious, but my thumbnails now look like troll claws, I lost the remaining hair under my arms and the chemical stink oozing out of my pores means I’m showering as often as possible and wearing out deodorant sticks at a furious pace. When I came out of surgery I had thought the smell was coming off the hospital issued gowns and slips of paper they call bedsheets, but alas, the first night home in my own bed confirmed that it was in fact, coming from me.

Cuz Clowns are Scary Too

The circus really begins tomorrow with the arrival of my parents in town, just in time for me to get a last minute transfusion to top up my platelets before the big show. Friday morning I am getting a Transternal Resection, or a Sternotomy … or in laymen’s terms, open heart surgery.

Actually, I’m not sure that is technically the right term for it as I don’t think they will be directly exposing my heart, even with the ribs open the heart is in a big bag called the pericardium sack. Anyway, they aren’t interested in my heart; they are going in after Kuato, the cancer that has been squatting in my chest the past year or so.

We did find out, through a conversation with a very friendly, if gigantic Russian doctor, that the chemo pounded the little fucker down from 13.2cm to 9.1cm. It’s nice to hear that I didn’t go through three months of hell for nothing. Big Russian Doctor btw, is the guy who’ll be giving me my drugs because in Russia, drugs do you. Its cool though, he’s the same guy who hooked me up when they yanked out my gallbladder and I didn’t feel a frackin' thing! The guy actually cutting me open has a wing of the hospital named after his family. I choose to be encouraged by that and not suspect nepotism or a large endowment of any kind.

Can’t say I’m not nervous about this, but I’m a little excited too. If all goes well, it represents the beginning of the end of this, rather unexpected chapter of my life.

Here goes … everything!

For the less squeamish, here is some youtube footage of how they are going in after the little fucker.

The Post Chemo Blues

I had my last scheduled chemotherapy last Friday. I’d have posted sooner, but I find that I’m not really in the mood to celebrate, mostly because there was the wave of side effects to get through first.

The chemo did another number on my blood cell counts. Not enough to require another transfusion, but enough to push them to the borderline which meant getting up very early on a Saturday and trudging all the way downtown for a simple follow-up blood test. In more productive testing news, Monday morning I had my post-chemo CAT scan to see if the treatments have had any effect on the size of the tumour (I find out the results next week). They had to put an IV line in to inject some dye, but when the test was over and they removed the line, they didn’t put enough pressure and I didn’t pay enough attention. Thanks to my low platelets, I ended up bleeding all over the floor of the CT room which I though was pretty funny, but that may have been the lack of blood.

Then right on schedule the wave of side-effects hit me yesterday. My brain was filled with chemo-fog and my body felt like it weighed twice what it should. There isn’t much you can do on those days besides nap and feel useless.

Cancer is easy to understand, or at least mine was. There is a tumour so you fry it in chemo then cut it out. It is the side effects of the chemo that scare me. I can’t look down at my swollen, discoloured fingers and wonder what scars the treatments might have permanently left me with. They told me going in that I’ll never scuba dive again or be able to have children. Both took some getting used to, but in the end they seemed a reasonable trade off for saving my life.

What they don’t tell you are the side effects they can’t predict. Everyone gets their own unique set and they can’t tell you how long it will take for them to fade away, or even if they ever will. Will I ever be able to walk barefoot on a hardwood floor without cringing or climb a flight of stairs without wheezing? Swimming through high school and university had left me with a pretty solid set of lungs, but now I get winded after a vigorous shower. If I push it too far, I can feel my body sucking in breaths in ways it never did before and it terrifies me. They are going to be cutting into my chest soon and there are risks associated there as well, so will I ever get back to where I was? Almost forty is a tough time to be starting over.

I’m not really depressed or anything, just venting. On the good days I try to get ahead and plan for the future. On the bad, I do what I can and listen to a lot of Warren Zevon, Today I feel better than yesterday. Tomorrow I’ll take as it comes.

A Season in Hell

A Season in Hell,
by Mark Dery

My Five Side Effects that have Stumped the Doctors

I’m alive! Turns out the fever was a drug reaction, not an illness, but it still meant I had to spend five days in hospital while they pumped me full of blood and electrolytes to get my counts up.


(If you've not seen this movie, do so)
The bad news is I have to go back in Thursday or Friday and will have to spend another weekend in the ward, but the good news is that it’s the start of my last round of chemotherapy! Can’t say it’s been a fun process, but so far I’m still on track to be done with this nonsense. It hasn’t been without it is surprises however, for me and for my doctors. So in honour of my last visit, here are:

My Five Side Effects that have Stumped the Doctors
1) Constantly Running Nose
Not the most socially pleasing effects, but thankfully one that can be treated by making sure that I’ve always got one of the dozens of mini-kleenex boxes I stole from the hospital close at hand.

I’ve had, at rough count, blood taken twenty times in the past five days (and from the same two veins, just to torture the crap out of me), and I have been tested for everything from ebola to corn pops, so they know that I’m not sick in sense of having a cold or flu. Then just for fun it culminates every couple of days in me blowing a blood clot the size of a loonie out of my nose.

Likely Cause: No idea, but in a pattern that will become apparent, the nurse were not surprised by this, even if the doctors can’t tell me why it’s happening.

2) Fevers
Like the runny nose, I don’t have any signifiers of being sick, yet that was my second severe fever in two months. Luckily, they know exactly how to test and treat it, (I even carry around a take home crib-note version to give to Emergency Room doctors), but I never did get an adequate explanation as to why it happened.

Likely Cause: Some sort of reaction to the chemo drug. It came on almost instantly after my last express-chemo session.

3) Blisters
My fingers are turning brown and I’m getting gross blisters growing on my fingers and palms. This has been happening since the last time I was in hospital two weeks ago and I pointed it out to the doctors back then. One of the nurses sent me home with a couple of creams that have worked on other patients, but this morning when I pointed out the new blisters forming on my ankles and elbows to the oncologist on-call, she said, ”I dunno. I’ll have to look that up.’

Thanks, genius!

Likely Cause: Thankfully, that oncologist isn’t one of my regular doctors. A two second Google search backed up by a consult with my actual oncologist who explained that the chemo drugs can filter down to the finer capillaries at the low gravity points (like hands and ankles) and leak out, causing blistering or sunburn-like symptoms.

4) Neuropathy
My personal choice for least favourite side effect. The crippling pain in my feet that left me barely able to walk and the lobster-claw stiffness in my hands has faded considerably, but still not gone and I still take a couple of pills a day specifically to prevent it from becoming more uncomfortable. Nor can they promise me that it will ever go away, though they are “pretty-sure” that it will fade with time.

“Pretty sure” is a pretty big leap considering that when the symptoms first presented they were flinging me back and forth to rheumatology, to infectious disease, to neurology to GI in an effort to prove that the pain was being caused by anything but the chemo drugs.

Likely Cause: Chemo neuropathy isn’t that uncommon, but it normal presents as tingling or numbness. I’m sure that the exact reason I got it so quickly, severely and painfully is buried in some medical journal somewhere, but so far no one has been able to adequately explain it to me.

5) Kuato
As I’ve said before, and even explained to a number of emergency room doctors, councillors and med-students, a teratoma is a “side-effect’ tumour that normally indicates the presence of other, more common germ-cell tumours. And in a man my age it almost guarantees the presence of testicular cancer.

I don’t have any sign of any of that (knock wood!) As far as anyone can tell, it is just the teratoma. No one has any real idea why, but it is rare enough that I’m getting a little extra attention from the oncology department, so I’m not complaining.

Likely Cause: All cancer is caused by genetics plus environment. So somewhere in me was the genetic disposition to getting a teratoma, though cancer in my family is rare. The environmental factor is harder to pin down, but my personal hunch is that it had something to do with the drugs I was on to treat my Crohn’s disease.

The War Inside Me

I keep thinking that I’m going to get used to this. The first round laid me pretty flat, but I came out of round two feeling pretty good. So this round was supposed to be easier, right?

The doctors did warn me that it doesn’t work that way; the chemo builds in your system and each round takes a little more out of you than the time before.

After weeks of being assaulted by chemo and hospital food, my taste buds seem to have completely packed it in. I wouldn’t mind so much, but the dead taste they left in my mouth is truly revolting. Add to that the other, “digestive issues” I’ve been having and it can make for a pretty disgusting day.

The pain in my hands and feet has faded, but there is new evidence of the chemical warfare raging inside me. The skin on my hands has become thin and blistered as the chemo slowly ekes out of the capillaries. It makes things like holding stuff, turning on light switches, and brushing my teeth painful and stingy, and I tore a good chunk of skin off one finger undertaking the delicate procedure of opening a blind. At least this is a side effect they were expecting, even if their best treatment option is just lots and lots of glycerine.

Add to the general malaise, fatigue and a serious case of chemo brain has made the week go by in a hazy fuzz. The good news is that round three is over on Good Friday, which puts me within striking distance of finally being finishing with this nonsense.

Well these are not reasurring

In cancer science, many "discoveries" don't hold up.

And a Marketplace report on just how dirty Canadian hopsitals are.

Halfway There

Today was a good day. I got downtown early and was able to get through blood tests and express-chemo in record time. I was already downtown, so I stopped in to see some work friends, fill out a little paperwork and was still home before noon.

Today is the unofficial last day of winter here on the east coast. There’s still snow on the ground but the temperature is rising with double digits expected over the weekend. It was still cool and snowy enough when I got home that I was able to take Nakita on a long romp down the street and into the woods for a bit.

This morning was also the last session of round two, making it the official halfway point of my chemotherapy. Next week round three starts in earnest, meaning a couple of longer sessions in the chair but at the end each day I’ll be able to go home, sleep next to my wife and most importantly, eat non-hospital food.

I’m feeling pretty good right now. I’ll spare you the details about the blood clots in my nose and I have a few achy bones and joints from the home injections to boost my white-cell production. I’m still experiencing chemo neuropathy: muffled hearing, stiff hands and pain in my feet, but I’m able to walk well enough to take Nakita out, I can do stuff around the house and the pain is manageable with meds.

There’ll be more side effects to come, but at this halfway point I have come to realize just how lucky I’ve been through this process. I’m otherwise feeling fairly healthy, my diagnosis hasn’t changed (official update to come on Tuesday) and my long term outlook remains positive. If everything goes to plan, I’ll be done chemo in six weeks then I’m looking at the surgery, which we’ll deal with when it comes.

I have a huge support network I love more than anything and that I owe more than I can ever hope to pay back. Support ranges from my wife, our families, Nakita (never underestimate the help of a good dog), the nurses and doctors (I’ve been EXTREMELY lucky), friends who came to visit my in hospital, took me to movies, cooked me dinner, and made me hats. Then there’s everyone who’s sent me a card, email or posted an encouraging comment. Believe me, every little gesture is appreciated.

When I think of people I’ve meet that aren’t as lucky, I realize how good I’ve got it. There’s Greg Hebert and our friend who watched her boyfriend waste away from throat cancer. The man I met who casually mentioned he just started his sixth year of treatment or the elderly couple dealing with liver cancer. The joking teen in the hospital kitchen with testicular cancer who was clearly terrified and certainly not last nor least, the leukemia patient who was about to be released after six months in the oncology ward, but didn’t want to go home because the last time he’d gone back to Cape Breton an infection set in and nearly killed him.

I can’t buy into the premise that people who are suffering with, or have survived serious illness are suppose to come out of it better people with some sort of insight the rest of the world doesn’t have. I think they are regular people just trying to get by under incredible circumstances. But no matter what kind of person they are, they will find a depth of both courage and fear they have never experience before. And I also know that at some point, it is coming for everyone.

So what whatever your journey is through life, I wish you all the love and support that that I have experienced these past months, and it breaks my heart to know that not everyone will get it.

“May the long time sun shine upon you, all love surround you, and the pure light within you guide your way on your way home.”

Surviving the Hospital

Barring another fever, my days as an inpatient should be over! However, I did get to spend the bulk of February in the hospital and I thought I'd pass on a few tips about surviving your Hospital visit.

Sleep When You Can
It starts very, very early in the hospital. If I was lucky I’d get to sleep until 7am before the morning rush of nurses, blood tests, doctor visits, vital signs, cleaners, breakfast, students, nurse’s aids and morning meds. Then once that started to die down, chemo would start around nine, which meant having the nurse come in every hour or so change the bags and deal with the constant beeping of the IV. For my first round of chemo, that went on for nine hours a day. When I went in to the hospital a second time, I had a fever which meant the IV was running constantly for three days.

You’re nights won’t be much better. Look forward to nightly meds, vitals checks, bed checks and bored nurses talking in the hallways. Sleep when you can.

TV Service
If you must, but my advise is to get internet and/or a portable DVD player. At plus+ten dollars a day for basic cable, the hospital TV service is pure rip off (see below)

Internet
Not all the wards have internet, but it is becoming more common. Immediately check to see if you have access to a network to avoid paying the TV costs because it is easy nowadays to catch up on most shows via the web.

Movies
If you have access to a portable DVD player or a tumbdrive full of favourites, this is also far and away a better bet than the TV service.

Shave your Forearms
If you’re due for a lot of IV, it is better this than having each individual hair pulled out painfully piece by piece every time they have to move a piece of tape.

Bring Food
They make hospital food jokes for a reason. It is really, really bad. Make sure you have a bag of granola bars, fruit and some treats stashed somewhere. And god help you on fish Fridays – diet permitting, this is the day for take out.

Learn to Horde
If they bring it to you and you don’t need it right away, squirrel it away. This goes for everything from meds to sugar packets to peanut butter and plastic cutlery. Because there will always be a time later when you really need something but you won’t have it. My re-occurring problem was they would always bring me cereal in the morning, but no milk.

Pillows and Blankets and Sundries
Just when you think you’ve gotten comfortable with the blankets, they’ll come and change your bed leaving you with nothing but a paper thin sheet and napkin for a bedspread. Bring in a spare blanket from home that they can’t steal, and a pillow too if you can. The hospital ones are wrapped in plastic that always causes the pillowcase to slip off and you wake up every morning with your head sweaty and stuck.

Things like shaving cream, razors, toothbrushes, toothpaste and mouthwash are also advised. The hospital has its own versions if you’re desperate, but you aren’t going to like them.

Lock Up Your Stuff!
I lost two good pens to well meaning nurses. Plus the hospitals are full of people just wandering around, not all of whom are that well meaning. Most rooms have a locker, so bring a lock and make sure you’re valuables are locked away when you’re not around or asleep (or at least lock your suitcase or bag). This goes double in a shared room and triple for day-surgeries and out-patient treatments like blood work or day chemo.

So What Do I Have, Exactly?

I’ve been asked this question once or twice so I shall attempt to clarify:

I have a nine-centimetre mass in the left-to-mid side of my upper chest. It is sitting on top of my lung and pressing towards my heart. We have unaffectionatly dubbed him Kuato.

Its official cancer name is an immature teratoma, which is actually a good news since they the initial diagnosis where lung cancer or lymphoma (that was a bad month).

There are embryonic cells left over from when you where nothing more than a zygote. These cells are primarily found deep inside your body and for most people they’ll never cause a problem. However, every once and while, one of them decides NOW is the time to start growing, but without instructions to grow into anything specific, they become a tumour.

In men my age, that usually happens in the testicles. This can start a chain reaction up the body, stirring other embryonic cells to start to grow. Some of these grow into more aggressive germ-cell tumours (this is what happened to Lance Armstrong) while others become less aggressive teratomas.

I’ve been poked, scanned, shot through with sound waves and Xrays until I glow in the dark, but they can’t find a trace of anything else, yet. I’m doing chemo because all that doesn’t mean that there isn’t something lurking around deep inside somewhere, still only a few cells wide but waiting to explode.

What makes me a frickin’ medical anomaly I have no sign of the more aggressive germ-cell types. So far I only have Kuato. The chances of getting a teratoma on its own are so rare that I’ve actually become something of a case study.

The good news in all of this is that immature teratomas are very self contained and not likely to spread (though they can grow teeth and hair).

The bad news is that given its location in my chest, I may be looking at some major surgery. Teratomas don’t respond that well to chemo, but even if they can shrink it down a little, it would help.

Round II: FIGHT!

Fun new medical term: Chemo-induced neuropathy. After being bounced from GI to rheumatology to infectious disease and finally to neurology, it turns out the infectious disease doctor was right; it is the chemo that is causing the pain in my hands and feet.

It is kind of a good news / bad news situation. The good news is that I don’t have complications from the Crohn’s, arthritis or meningitis, but on the other hand, they don’t know how the next three cycles of chemo will affect the neuropathy and worse yet, they can’t make any predictions of when it will fade away, if ever. I do get codine upon request now, so I suppose it isn’t all bad news.

To try and limit the effects, they are switching out one of the chemo drugs, but like every thing else in this crazy story, it comes with some trade offs. The drug they are taking me off was the one that was rough on my bladder (V) and they are going to switch me over to the one that will be hard on my lungs (B). Real hard … like wearing a medic-alert bracelet for the rest of my life and never being able to scuba dive again, hard.

And the fun part is that V and B aren’t even the drugs responsible for the neuropathy. That is the chemo drug called cisplatin, but cisplatin is the main fighter for germ-cell tumours and they can’t risk changing that out. However V has a history of weird side effects and they’re hoping that it was exacerbating the neuropathy. It gets a little worrisome how often you hear phrases like, ‘we hope’, ‘possibly’ and ‘we’re not sure’ come out of your doctor’s mouth.

If my blood work is good, I start the second round of chemo this afternoon. I’m stuck in the hospital through the weekend, but the good news is that if everything goes well, this will be my last round as an in-patient! The bonus from switching from V to B is that I will be able to be an out-patient and go home between treatments.

I’ve been in this dump for over a week now and the few precious hours I’ve been able to escape over the past two days has reminded me how much I just want to go home.

Good News, Bad News Update

The Good News: I got ice cream for lunch!

The Bad News: my bloodwork from this morning sucked, so I have to have another blood transfusion.

What the Hell Happened

Last Tuesday night may have been one of the worst of my life. Soaking my feet in ice water had stopped being effective for a couple of days, but I still did it, mostly to try and numb the constant burning and throbbing that radiated up from my feet and hands and was gradually spreading up my limbs.

Minute by agonizing minute, the night ticked by. I’d drift off to sleep for twenty minutes until a twitch or jerk would send a fresh ripple of pain. Just the weight of the blankets was painful.

The wife finally came in around six am to check on me and quickly noticed that I’d soaked the sheets in sweat. She ran out to get the thermometer and it wasn’t long after that I was bundled in the car and headed to the hospital.

Chemo kicks the crap out your white blood cells, which help you fight off disease. This leaves you very vulnerable to infection and all chemo patients have this card that tells you what to do in case of fever. If you have to go to an ER, you present this card and they don’t make you wait for 6 hours in a room full of infectious sick people. Luckily, we didn’t have to go to the ER this time; we had called ahead and were rushed right up to oncology where they checked me out and the next thing I knew I was admitted.

Since we’d gone in such a rush, I had nothing but the clothes on my back and my e-reader. I also spent my few days in the transplant ward (also a place where infection is very dangerous) which didn’t have wifi.

Quick run down on the medical stuff. One blood transfusion later and my blood counts are slowly rising plus I haven’t had a fever in a couple of days. And in a development that made me freakin’ ecstatic, this morning they gave me a break from the IV for the first time in four days! It is amazing how much you come to loath those dragging those things around.

The silver lining to all this is that while they have to deal with the fever, they have also been looking into the hand and foot pain. They were pretty dismissive when the pain first started and tried to blame it on my Crohn’s, but the problem with that hypothesis is that chemo is usually beneficial for Auto-Immune Disease patients and I’m still taking steroids, both of which would fight any symptoms of Rheumatoid Arthritis.

I saw my GI doc on my own while I was bumped to and cleared by Rheumatology. Then they tried Infectious Disease just to make sure I didn’t have meningitis, hepatitis or transmissible spongiform encephalopathy. My next stop is Neurology on Monday, but the old Infectious Disease doc probably summed it up best with, “All your Doctors are twenty years old, they haven’t seen shit. Its one of the chemo drugs, you’re just having a bad reaction.” Then again, he also tried to test the reflexes of my ankles by grabbing them real hard and whacking them with a hammer. He thought my reflexes were a little slow, as they might be since I was arched over backwards in pain at the time.

On Monday I have an appointment with my main Doctor (who was on a deserved vacation last week) and will be looked over by Neurology. Hopefully they will clear me as well and we can get back to figuring out which drug is boiling my feet in acid. My real hope however is that they let me go home for a day or two this week. My next five-day round of Chemo is due to start Thursday.

My Crack Medical Team

My Cancer Day

Another sleepless night on the couch. As much as I long for my warm, comfy bed, if I am to hope for any sort of rest, warm and comfy are no longer parts of the equation. Besides, it would not be fair to the Wife to subject her to a night of twitching and jerks, especially since she just drifted off watching ‘The Walking Dead’.

So Nakita and I curl up in the living room with the heat turned off and a bucket of cold water on the floor. Usually around three or four the Husky gives up and goes downstairs where it’s warmer, or where she at least doesn’t have to put up with me stepping over her head every hour.

The bucket of water is for my feet when the cramps start up. After about five minutes of soaking, if I’m lucky, the water works, the cramps fade and I’ll drift off again, only to spasm awake an hour later as blood flow returns with a vengeance and my feet instantly feel like they’ve been clamped in a vice.

It happens in my hands too, but it’s easier to ignore and I can sometimes massage the cramps out. Other times, it means stumbling to the bathroom to stick them under the sink, or if I can’t be bothered, just sitting hunched over with all four extremities in the bucket.

So combine all that with the normal perils of sleeping on a couch just few inches short of comfortable stretching out length and as the sun rises I’m usually wide awake and watching the Canada AM hosts begin their daily death march across five and a half time zones.

Throughout the day, my skin feels like it has shrunk three sizes making it tight and painful to move, especially around major joints or in my face. Where it isn’t tight, it feels like someone turned the sensitivity of every nerve ending up to 11 which can cause waves of unpleasant, prickling sensation from even the lightest touch. When they happen together, I twitch like I’ve just been zapped with a taser.

I eat something small, mostly to cushion the blow of the dozen pills I’ve got to swallow, and then begin the morning rituals of wife and animal care. Once everyone is taken care off, the steroids are about due to kick in, giving me my most productive, if manic hours of the day. My goal right now is to get at least one major chore done a day and hopefully have enough strength left to let Nakita drag me down the street.

By the time we get back I’m usually completely hobbled by foot cramps, which means sitting in a tub of cold water, psyching myself up and numbing myself out as much as I can before attempting to have a shower. What happen next is probably the most unpleasant ten minutes of my day.

Utterly defeated and jerking around like Joe Cocker, I crawl into bed for a nap. Though I’ve only got an hour or two before the cramps wake me up again, with the steroid high wearing off and the rigours of the morning, this will be the most intense sleep I get all day.

The rest of the afternoon and evenings pass by in a gradually thickening fog filled with whatever bouts of productivity I can squeeze in between the spasms, crawling skin, cramps, nosebleeds and general discomfort.

The thing is that I actually think I'm starting to feel a little better. It’s been a week and a day since I got out of hospital, with about ten days to go until I go back in for round two and it finally feels like some of the chemo kickback is starting to clear. I’m looking forward to the next few days, and utterly terrified at how bad I’m going to feel in a month.

Five side effects of Chemo they don’t tell you about…

Chemo is toxic stuff. The nurses put on haz-mat clothing before handling your IV bags and if you’re in-patient for treatment, you at least get the luxury of your own room because it is dangerous for other people to use the same toilet.

But the truth is, the dramatic side effects you see on TV, the vomiting and hair loss are not that common anymore. For many treatments, hair loss is minimal to non-existent and while you will get nausea, they treat it pretty seriously nowadays. During treatment, I got at least two bags IV a day just to control the nausea, followed by one prescribed pill and as much Gravol as I wanted. When your system is getting pounded by cancer and the chemo drugs, the last thing they want is to be worried about your weight.

At some point, you are still going to end up puking like you just pledged Delta Tau Chi, but the point is, they don’t want you doing it all the time.

However, there are some side effects that they have not warned me about, some of which they can control, and some they can’t.

Chores
For five days they pumped nine hours worth of fluid into my arm, most of which is just saline water to carry the chemo drugs and keep me hydrated. It also means I had to pee ... a lot, usually while dragging the bane of my existence, dubbed IV-88. This (the peeing, not the naming your IV machine) is actively encouraged by the medical staff because the chemo is building up in my body and this is making my fluids toxic. Keeping your legs crossed is not advised for the long term health of your bladder.

Visitors are not suppose to use my bathroom at the hospital, and for the first week of my recovery periods at home I am suppose to use only the small upstairs bathroom, as well as keeping the door shut at all times so that the animals don’t go in.

If I happen to use the downstairs bathroom, I have to wash off everything before the wife uses it, and in a few more days I will have to scrub down both bathrooms top to bottom.

For the same reason, I have to do all my laundry separately as well. If there is one thing you really want to do on your first day home is five days worth of stinky hospital clothes!

So, come on cancer patients! Get ready to scrub some toilets and washing sweaty socks.

What? Who said that?
All Drugs Have Side Effects. Chemo is a nasty drug designed to hunt and kill, but like Dick Cheney on a duck hunt, it doesn’t really care what gets in its way and it will blast perfectly healthy tissue right in the face if it dares stand in its way. The first drug they were going to put me on had a pretty good shot at turning my lungs into tissue paper, then they realized that I might need lungs and switched me to one that will use my bladder as an artillery range instead.

The drug they can’t switch out will damage my hearing. They say it’s only a possibility, but I already have enough hearing loss to be recommended for hearing-aids, so I doubt that my luck will be that good.

When we got this news, the wife started laughing hysterically. It also had the audiologist cleaning puke out of his booth since they realized too late that they shouldn’t be sticking tubes down the ears of the guy who just finished five days of chemo.

Pain
My skin hurts, my hair hurts, my head hurts and stomach hurts, but those I was told to expect. However, my hands and feet are killing me and no one can tell me why. Best guesses are something called Hand-Foot syndrome, where minute amounts of the chemo leaks out of the smaller capillaries in your extremities leading to sunburn like symptoms, but I don’t have any of the redness or swelling. Or it could be something called Tumour Lysis where the excess amounts of protein in my system from the tumour and other tissues breaking down leads to gout-like symptoms. Or it could be arthritis brought on by the combination of the chemo and my Crohn’s disease. No one seems to know and the oncologists and GI doctors are playing hot potato with the file.

So in the meantime, I shuffle around on painful feet and have to hold any glasses with both hands and open pill bottles like your Great Aunt Ivy while the poor dog whines and wonders why you’re home all day but can’t take her for a walk. I thought a bath would help … it would have been easier to just set fire to my slippers.

Hiccups
The single most annoying, and not uncommon side effect are the f*cking hiccups!

This actually happens often enough that they expect it and have meds they can give you at request. The problem with that statement is, ‘at request’. No one tells you they have these miracle meds until you’ve spent the first night in synchronous diaphragmatic fluttering agony.

The morning after my night in hell, just after I mentioned the hiccups to the nurse and she said that they could have given me meds for it, is the closest I have ever come to committing violent murder. How dare they keep that a secret? There should be a big fucking sign right when you enter the cancer ward: IF YOU HAVE HICCUPS, PLEASE BUZZ THE NURSE! SHE HAS PILLS!

The Death of Whitney Houston
Who knew?

Things You Didn’t Know About Getting Cancer

The Tests Results Are Wrong
There are lots of things that can spot a potential cancer; Xrays, CT scans, endoscopes, mammograms, bend overs, ball-handling in the shower and my personal favourite; when the wife allows you to do a manual breast exam. However, these identify only POTENTIAL tumours. From there you usually have to go through one or two more doctors and hopefully one refers you to a lab to get a biopsy. A biopsy is the removal of a piece of the potential tumour where it is then looked at by a trained professional who identifies what kind of cancer you have. Sound simple, right?

Nope. If you are lucky, the biopsy will fail because of contamination or insufficient samples and they schedule for another one, a few weeks to a month later. If you’re unlucky, they accidentally pick out some healthy tissue instead and tell you that the extra arm growing out of your liver is just a harmless fat deposit.

Not to mention that cancer is an incredibly complex thing, and the pathologists who look into those microscopes are only human. You get one coming in all cranky because his wife is sex-txting the pool-boy and his kid just announced his intention to drop out of pre-law and travel the world following Lady Gaga’s world tour, you could be royally screwed.

Doctors Will Lie to You
Doctors do not like to look stupid. They spend a lot of time and money to get through med school to raise themselves above the masses and leave mundane forms of address like Mr. and Ms. behind them. They are DOCTORS damn it!

Actually, chances are they ARE smarter than you, at least about mediciney stuff, but as TV shows like Grey’s Anatomy will tell you, they still have a lot to learn about the complex desires of the human heart.

So partially, they lie to you because you’re stupid. It is no good telling you exactly what has gone wrong in your body, because you likely won’t understand it. So they give you the Coles Notes of the Coles Notes version, which means they are gonna gloss over and avoid trickier subjects unless they have to, like exactly how they are going to take a look at that giant polyp in your colon that looks suspiciously on the Xray like a lost My Little Pony.

They might also lie to you because they can be lazy pricks. I was initially referred to a surgeon who flat out lied to me and said the lab had not sent over the results of my biopsy. I knew this was a lie because the doctor in the ER where I’d spent the night before was able to see the results. The surgeon had glanced at the report, judged it to be non-surgical and tossed it into some file where it waited for FIVE WEEKS to be sent to an oncologist where it belonged and I could finally start on proper treatment. Five weeks can be a lifetime for some cancer patients.

Nor can I even call him on his dickishness because once the chemo is over guess what… the dick doctor will be in charge of my case again.

They Don’t Know What is Going On
As I said, caner isn’t just one thing, it is more like a catch all phrase that describes thousands of different conditions. Which means that if your cancer isn’t obvious, the oncologist have a lot of sorting to do to figure out what is going on.

I’m currently on my second day of chemo of a five day in-patient cycle, followed by two weeks home rest before coming in for another five days. This will go on for three months before surgery. And you know what, they still don’t really know what I have. I’ve been cleared of lymphoma and testicular cancer, but my bloodwork is still going haywire and I have a seven inch Kuato sitting inside my chest (hence the needed surgery), but Kuato wouldn’t cause the blood test results and is usually an indicator of something else. So, what is it?

Too bad they are cancelling House.

It Will Be Expensive
I am a full time employee whose salary will be cut by almost 50% while I’m off on extended sick time, plus the drug costs down the road. The wife is a student working part time with another year to go.

Yeah, this is going to suck.

Patience is a Virtue, and a Curse
We’ve all seen the movie or the TV show where a character is diagnosed with cancer in a few days after first noticing a lump… bullshit. It can take months for you to go from your GP, to a specialist and finally to an oncologist. Shiva help you if your file gets to the wrong sort of specialist along the way, because that will eat up weeks. Some of it you will just have to suck up, close your eyes and think of England.

However,

Do not grin and beat it. Be a squeaky wheel. Call every week for that test result. Ask to see another doctor or if nothing else, pester your GP until she’s run every test she can and she’s sick of the sight of you.

Once treatment has begun, don’t be afraid to ask the stupid questions. Tell your doctors everything and everything then watch them scramble to come up with an answer, (My farts smell like Skittles, is that normal?) Trust me, the embarrassment will fade pretty quickly and soon you’ll be dropping your pants in front of strangers and asking nurses to check your stool samples with grace and aplomb.

I’m sure more things will occur to me as I go, but until then, Good Luck!

So It's all Bruce's fault!

I am going into the hospital for five days in-patient chemo. Xrays done when they removed my gallbladder, back in March revealed a teratoma tumor in my upper chest. Teratomas, while harmless enough on their own, are indicitive of other germ-cell tumors such as testicular cancer. They aren't sure specifically what I have right now, but given the idiotic amount of time that has past since the lump was first identified, my oncologist wants this to start now.