Sunday, February 26, 2012

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.

Tuesday, February 21, 2012

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.

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.

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.

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.


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.