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.