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.