onward ho!

I finally got a call from the BC Cancer Agency, and I have an appointment for March 9, when I'll meet with oncologist Dr. Cheryl Ho and presumably be scheduled for further testing before a treatment strategy is decided.

Although my lung tumors proved to be squamous cell carcinoma, it's unknown what type/s lurk in my lymph nodes, spleen and bone marrow. I'm hoping for lymphoma.

Seriously, I want lymphoma (the easily-treatable kind with the great odds for success) to be the yet-unidentified cancer in my body. That would mean that the lung cancer isn't Stage IV, which would give me a much brighter prognosis. I've been looking for a t-shirt, "I want lymphoma," but haven't had any luck finding one.

The BC Cancer Agency is a superstore for cancer patients. Consults, testing and treatment, counseling for patients and their families, a resource library and even a lodge for affordable overnight stays (meals included!) for out-of-town patients. That's me, an out-of-town patient, but I'll be driving back home to my own bed if I can manage it.

I had my PET Scan (positron emission tomography) at the Cancer Agency, and it was all good until the very nice assistant decided to assist me with a firm, supportive arm around my waist.

I really wish someone had told her that my side was terribly sensitive, downright painful in fact, so she wouldn't have been subjected to my thoughtless but swift reaction of pulling back a fist and yelling, "Getyer fuckin hands offa me right now!" Intense pain does not improve my usually sunny disposition, and I'll be feeling badly about that one for a long time.

It was less than a month from the PET Scan that set off the alarm, "CANCER!" followed by surgery, and the subsequent biopsy results of squamous cell carcinoma. Pretty darn quick, and I was liking the pace. Now's is going to be almost another month between the biopsy results and a consult with an oncologist. Sigh. Hurry up and wait.

But, you may ask, why so long? Because the BC Cancer Agency's procedure includes "triage" on referrals, and it takes weeks. Triage? On referrals? If you're like me and know the definition of the word, you picture a stack of bleeding, gasping sheets of paper that have just been dragged in from a horrible accident out on the street.

Oncologists rush in to study these sheets of paper, deciding which ones get their attention (earlier appointments) and which are left for later appointments. Be glad that oncologists don't work in the ER.

The posters and t.v. ads always stress the importance of early detection in cancer. Silly me; I thought early detection implied early treatment, but it might mean that late detection results in no treatment at all... because the patient dies of old age before getting to see an oncologist.

Seriously though, I am impressed with the response of my general practitioner, Dr. Ingrey, and all medical professionals who have dealt with me in Vancouver since I've become a cancer patient. At no time in the process did I feel like a widget on the assembly line, no small feat because, in 2007, there were over 21,000 new cases of cancer diagnosed in the province of British Columbia alone.

the wrong bus

• Jan.  12 - Diagnosed with cancer.
• Feb.   5 - Wedge resection lung surgery, three tumors removed.
• Feb.   7 - Drainage tube removed from said lung.
• Feb.   8 - Home from Vancouver General Hospital.
• Feb. 12 - Biopsy result: squamous cell carcinoma.
• Feb. 17 - One and only stitch removed.

That starfishy thing at the right? It's a piece of lung with cancer. It's interesting, how things change after you've been diagnosed with cancer and start to enjoy new experiences brought about by the disease.

For example, my doctor said, "Your incisions look good," as he removed a stitch this afternoon. Sigh. I remember being told that my hair looked good, my clothes looked good and even my ass looked good. Today, my incisions look good and my doctor looks too young to be practicing medicine. I'm obviously on the wrong bus, but I don't know how to get off.

The stitch hadn't been bothering me but, now that it's gone, I'm missing a pinching feeling when I turn or move a certain way. I'm also missing an occasional jab from the end of the heavy, stiff thread (they don't really use catgut),  and a pull when it got caught in a seam of my shirt. I assume you know I don't mean "missing" in a gee-I-can't-live-without-you kinda way.

Still some sharp twinges in my chest but nothing serious. My breathing is improving daily, and I can almost accomplish a full yawn. It's really nice to be able to sleep on my side again, and I look forward to being able to sleep on the other side too. Still to come, being able to sneeze without feeling like I've been tasered by an overzealous RCMP officer at YVR.

I left the hospital with instructions for a number of exercises, including deep breathing and coughing. Yes and, coughing exercises and, no, I wouldn't have imagined that one either. I guess it's good for expanding the lungs or toning their muscles or something. I have no idea. I just do my exercises and don't question the experts, but I have to say my coughing has improved tremendously. At first, it was a pathetic little, "huh!" but now it's sounding like an almost-respectable smoker's cough.

I have instructions not to lift anything over ten pounds for 6-8 weeks. Ten pounds is nothing. My cat weighs ten pounds, my camera bag weighs ten pounds. This is the most difficult part of the whole recovery, not being able to pick up my cat. Poor Fraser, he probably wonders what he did wrong. Not only am I not picking him up but, in bed, when he heads for his usual snuggle spot across my shoulder, he gets shoved to the floor. He is adapting though. Now he avoids walking across my chest by walking across my face. This is especially charming at 3 a.m. when I'm sound asleep. Imagine ten pounds of weight distributed to four relatively small paws. Then imagine one of those paws stepping on your closed eyeball, pressing down with most of that ten pounds. Charming.

I've been taking red reishi mushroom capsules since I've been home from hospital. Okay, I see your eyebrows go up and your eyes get big, but let me explain. Ganoderma lucidum has been the subject of a number of legitimate, reputable medical studies, and it not only shrinks tumors in lab rats but, in people, alleviates the side-effects of chemo and radiation treatment for cancer. I am a skeptic, but I do believe in science, so we'll give this stuff a fair trial.

Not having had cancer before, or a piece of lung removed, I have no idea how I should be feeling, but I suspect I'm doing pretty well considering that for several months before surgery I was pretty much bed-ridden and unable to eat anything but the blandest diet (I'd lost over 40 pounds, but I'm pretty sure that was from not eating rather than the cancer). In the past week, in spite of the surgery, my appetite's improving, pain and nausea have vanished, my energy level is increasing and my strength is returning. Is it the mushroom? I don't know, but I'm going to keep taking it.

No more Dilaudid, morphine, Ativan, Gravol and a few other prescription medications for nausea, and no more "puffer" shots of whatever that stuff is that allows you to get enough oxygen not to pass out. My drug consumption has been reduced to chewing a half dozen pieces of nicotine gum throughout the day (it's Day 14 as a non-smoker).

Throughout the day, I do think of having a cigarette, or rather of enjoying a cigarette, but the thought passes quickly and it's taking longer and longer to return. However, I firmly believe that everyone needs at least one bad habit, so I'm drinking a glass of wine before dinner, or just to be sociable if someone drops over. Or, if the sun is shining and I'm in the garden.

the five stages of stupid

A cancer diagnosis will, at least, get your attention, not unlike like a smack upside the head with a brick. If you could visualize the feeling, you'd see yourself as one of those cartoon characters who gets run over by a steamroller, flattened to a quarter-inch thick on the blacktop. But, toons have an easier time peeling themselves back up to carry on with the show.

People normally react with denial, bargaining, anger, sadness and, finally, acceptance. These are the classic five stages of grief, coined in 1969 by Elisabeth Kubler-Ross in her book, On Death and Dying. They occur in any loss.

You grieve at the death of a loved one, the end of a relationship and the loss of physical possessions, such as having your house destroyed by fire or your Harley Davidson stolen. And, the stages of grief are set in motion with the diagnosis of a potentially fatal disease.

I was lucky, I immediately went into shock and remained that way (with no small amount of help from Ativan and morphine), until I could work through the five stages of grief in a calm and reasonable manner. Here's how it went: 

Denial - Oh, but I can't have cancer, not me. Okay, that's just inane. You have cancer and you know it, so move on to the next stage. 

Bargaining - If I survive this, if I can only get better, I promise I will...
Promise what? Give up eating chocolate? Give up wearing wool socks? Dance around a fire naked while howling at the moon? Don't be silly. Nobody cares. Nobody wants to make a deal. Nobody can make a deal. You have cancer. 

Anger - I'm mad that I have cancer, that it wasn't diagnosed sooner, that I've been unable to work, that I may have to have surgery and chemo, that I may be sick for a long time, that I may die. I'm mad at the medical profession, mad at everyone who doesn't have cancer, mad at myself and mad at the world. I'm mad at cigarettes, mad at the pollution in the mill-town where I grew up, mad at the Vancouver smog that I breathed for ten years and mad at the additives in food. There now, doesn't that feel better? No? Well, sorry, it's one of the stages and you have to go through it. Don't get mad at me, I didn't write the damned book!

Sadness - This is the one that I got stuck at for about two weeks, until I realized that I had absolutely nothing to be sad about. Worst-case scenario, I die. Well, I was going to die anyway, and everyone has to die of something. Would I be happier if I was to be murdered by a crazed psychopath? How 'bout being killed in a horrible car crash, is that cheerier? Struck dead by a piece of falling space debris? There really doesn't seem to be a happy way to die. There's not an app for that.

Acceptance - I have cancer, but cancer isn't the problem. The problem is the realization that I'm not going to live forever, that I may not be here next year, or the year after, or ten years from now. I'm hardly worried about burning in hell after death, or worried about being subjected to harp music and dead relatives for eternity (although some of those dudes in the Philadelphia Cream Cheese commercials are kinda hot). I know that some people will miss me, and that I'll be missing out on life but, really, I'll be dead. I will have no perception of sorrow. I simply won't be here. 

So, let's move on, shall we? I feel reasonably well and there's no reason why I can't get as much pleasure from the things I enjoy as I did a year ago. Later this week, I need to get my truck insured so I can go for coffee at the Java Docks, head out on a sunny day to take pictures and go for lunch with a friend at Garden Bay Pub. Spring is just about here, so I can start planning my garden. My Pender Harbour website needs updating, and I'm itching to go back to work at the Village Vintner-- I seriously need to make some money. 

And, as weird as it sounds, cancer is my new hobby, a damned interesting one. I look forward to spending time on it, learning as much about it as I can.

red cup, black cup

I spent five days in St. Mary's Hospital in Sechelt last month and five days at VGH (Vancouver General Hospital) more recently.

The food service at both hospitals is contracted by Sodexo, and I thought it would be fun to compare the two from a patient-experience perspective.

Jell-O is typical hospital fare, so let's start with that. Pretty hard to screw up Jell-O, right? Jell-O at St. Mary's is kind of, well, slimy. It's almost tasteless and slithers rather than jiggles. It has an odd smell, but that could have been the plastic container it came in. It may have been better if not served warm. VGH? Real Jell-O, or something that looked and tasted like real Jell-O, served chilled, in a plastic bowl that didn't stink.

St. Mary's Sodexo soup is probably edible if you like oregano. A lot of oregano. It seemed to be the only vegetation in the bowl of muddy, brown, scummy liquid. The other primary ingredient was salt, and lots of it. It was served cool, but I understand that chilled soups are all the rage in trendy Yaletown restaurants. The cooks obviously weren't on the ball at VGH, serving hot soups with identifiable veggies like carrots in a flavourful broth that wouldn't be life-threatening to a cardiac patient.

Perhaps it's a simple matter of the dishes. In both places they're designed with identical, disposable plastic lids, but the cups, plates and bowls themselves are made of a different type of material. While VGH has a hard plastic, St. Mary's has opted for a softer, almost rubbery material. I'm guessing this is a safety factor. A rubber cup would do far less damage than a hard plastic one if flung at another patient, or a food-service worker, in a fit of rage.

Every day I tried to send my trays back, but I had to keep them for at least an hour. Why so long?

"So They know I delivered it," I was impatiently told by a food-service worker who pushed my gardening magazine on the floor with the tray.

"I can't eat this food, it's awful. Please don't bring me any more because it seems a terrible waste."

"We must deliver the trays, ma'am," she said with barely-concealed outrage.

Conspiracy theorists might think the kitchen at St. Mary's is on the take from MacDonalds, Mr. Submarine and other local eateries because of the many meals from them brought in by visitors. But no, patients are allowed to keep their own food in a kitchenette on the floor.

At both VGH and St. Mary's, juice came in little packages like you'd get from a vending machine. Of course, both were supplied by Sodexo. The odd thing is, VGH juice was juice and St. Mary's "juice" was some kind of flavoured drink that tasted like over-sweetened, watered-down Kool-Aid. Room temperature at St. Mary's, chilled at VGH.

At home, I make both oatmeal and Cream of Wheat. They aren't difficult to make, but require a bit of attention or you end up with something lumpy, either too watery or too gluey. Guess who wasn't paying attention to their porridge? Yup, and it was even better at VGH than my own.

At St. Mary's, I finally asked, "Why is the food here so terrible?"
A Sodexo employee snapped, "We cook for many, many people, and the food has to be put on trays and brought up from the kitchen. What do you expect!" Sorry, but unless the food is being sent from Vancouver by pack mule, that's not a good enough excuse. At VGH, far more meals are served and there are far more floors, patients and real estate. On my wing of the 12th floor, my meals were just fine.

Hospitals are boring, so patients make up little games. On the first floor at St. Mary's, we played What's in the Cup. Is it tea? Is it coffee? Why doesn't it look, taste or smell like either? We'd have a sniff, a sip and guess, but we were never sure. I decided to ask the experts, the Sodexo employees who served the dark and nasty brew.

"What's in the cup?"

"Coffee," she said, obviously not interested in chit-chat.

"How can you tell?"

"It's morning," she replied, in that same tone you'd use if someone asked a really, really stupid question.

Later, with a different food-service person:

"What's in the cup?

"It's tea," she cheerfully told me.

"How can you tell?" I asked. "Everything that comes in a cup looks, smells and tastes the same."
She laughed, and let me in on a secret.
"You know how we tell? It's simple... coffee's in the red cup, tea's in the black cup."

cancer cures smoking

On Feb. 4, the day the 2010 Winter Olympic Torch burned through the Sunshine Coast, I burned through nearly a pack of Export "A" Ultra Smooth cigarettes on my way to have surgery on my lung to remove three tumors. Cancerous tumors.

Why quit now? I smoked my first cigarette at 12 and, by 14, I was an accomplished, regular smoker. This was the 1960s. My mother smoked, most of my teachers smoked in the classroom, my doctor smoked in his examination room and, of course, all the cool boys smoked.

The only reasons for me not to smoke? "It isn't ladylike" and "it will stunt your growth." A towering (for largely Francophone northern New Brunswick) 5'9", I had no interest in being taller or being ladylike.

My mother dismissed the health concerns of smoking by pointing to her mother's grave: Elizabeth Doyle died of lung cancer in her early 60s, never having smoked a cigarette. Grandpa Joe always had a pipe in his mouth, but secondhand smoke wasn't to blame because he never lit the thing.

It may have been smoke inhalation damage from the night their Atholville home caught fire while they slept, but my mother was of the opinion that your birth and death were preordained so it didn't much matter what you did in between.

She got breast cancer in her 40s, in the mid-1960s. They lopped off her breast, gave her a few radiation treatments and she was fine, for a few years. It came back, in her lymph nodes. Surgery under her arm, more radiation and she was again fine. The third time it was in her throat, and now we're into the early 1970s. Same routine, surgery and radiation, and she was fine.

That last time, she quit smoking. Or so we thought. Next spring, as ten feet of snow melted behind the house, under a little window just big enough to stick your head out, a pyramid of weathered DuMaurier (her brand) cigarette butts was revealed. My father and I didn't mention it, he cleaned up the butts and my mother immediately took up smoking in front of us. As our family did with this kind of thing, we just pretended it never happened.

I walked up to the Vancouver General Hospital (VGH) admissions desk with a brand-new pack of Export A Ultra Smooth cigarettes in my pocket, along with a purple Bic lighter, ready for me as soon as I could get back to them. I'd been smoking for over 40 years and, cancer or not, I knew that the damage was done, so what would be the point of quitting now? I was a hardcore addict, I knew I couldn't quit, and I accepted that.

After surgery on Friday, my focus was on staying comfortable (comfortable = avoiding pain) and not messing up the drainage tube obscenely coming out of my lung, through my ribs and snaking over the side of the bed to some invisible receptacle for blood and gore. I made the mistake of having a peek and, believe me, they should not make those tubes transparent. It was unsettling, to say the least.

The pain was fine, unless I moved. I guess I shouldn't have been surprised; they did pull a chunk of my lung out between my ribs, along with the tumors in it, so those ribs and surrounding muscles were a bit tender. The nurses were wonderful, cheerfully pushing another dose of hydromorphone (Dialaudid) into my i.v. tube every four hours and sooner if I whined, which I did. Never occurred to me to crave a cigarette. I don't know if it was the pain, the narcotics or the unpleasantness of the situation, but I think I just forgot I was a smoker.

On Sunday, the drainage tube was pulled out (a disturbing sensation to say the least), the hole was closed with one stitch and the pain subsided considerably. I was now steady enough to walk to the bathroom without hanging on to a nurse, and even explore a bit beyond my room. Breakfast, lunch and dinner were all delicious. It occurred to me that I should be craving a cigarette, but I wasn't.

The next morning, Feb. 8, I was released, less my wee tumors, from the 12th floor of VGH after a checkup x-ray and visits from my surgeon, his residents and a few nurses to make sure everything was okay and I was clear on what I should be doing, or not doing, at home. 

Before leaving my room, in a fit of melodrama, I pulled the pack of Export A Ultra Smooth from my jacket pocket and disdainfully flung it into the garbage bag taped to my bedside table. It was like they were someone else's bad habit, and I didn't feel like wasting space in my pocket for it. I did, however, keep the purple Bic lighter.

The first few mornings at home, waking up, I visualized my immediate routine. Open eyes, stretch, reach for the cigarettes, light up, go to the bathroom, then to the kitchen for tea and cereal. I'd normally chain-smoke through that first cup. But wait, there are no cigarettes here. That's not the addiction talking, but my brain; still groggy with sleep, it hasn't forgotten the habit. Awake now, I don't want a cigarette.

It's been a week since surgery and I've still not smoked, nor have I had that berserk craving that's impossible to out-will or ignore. I'm down to only one or two 4-mg Dilaudid tablets a day, so I can't give that any credit. I'm feeling very little pain and getting my energy back quickly, so I should be wanting to smoke. But, I'm not. My jones has left the building. 

Cancer cures smoking.

hurry up and wait

One in three people will get cancer, and there are about 200 types of cancer. Everyone, at some time in their life, is affected by cancer. Although not the most common cancer, lung cancer is the most deadly. Of those diagnosed with lung cancer, 60% will be dead in a year and 70-80% will be dead in two years.

Lung cancer is divided into two categories, Small Cell Lung Cancer (SMLC) and Non-Small Cell Lung Cancer (NSCLC), based on differences in the onset and in treatment. I have NSCLC, which was revealed in a tumor biopsy. There are four types of NSCLC, all considered incurable:

•      adenocarcinoma;
•      bronchioloalveolar carcinoma;
•      large cell carcinoma;
•      squamous cell carcinoma.

About 30% of all NSCLC is squamous cell. It commonly metastasizes or spreads to the brain, liver, bone and other parts of the body. A PET Scan (positron emission tomography) showed that my squamous cell carcinoma may have set up shop in my spleen, various lymph nodes and bone marrow. Or not; the other locations may be lymphoma or some other type of cancer.

Lung cancer is usually treated, with or without surgery, by chemo and/or radiation therapy. Treatment strategy depends on staging or identifying the development progress of the cancer. Because it looks like mine has spread beyond my chest, I'm guessing it will be classified at Stage IV (advanced) but hoping it's a different type, which would mean that the lung cancer is less than Stage IV.

Although squamous cell lung cancer patients don't respond well to chemotherapy, they respond better to radiotherapy than patients with any other type of lung cancer. Chemotherapy is typically used only for symptom relief and, because I don't have much in the way of symptoms, I'm guessing radiation therapy will be recommended. 

My thoracic surgeon, Dr. Ken Evans, referred me to the BC Cancer Agency for staging, tests to determine if my other cancer/s are NSCLC or something else, and what my future holds in the realm of treatment.

I'll be dealing with an oncologist and other cancer specialists or, rather, they'll be dealing with me. Today they told me it usually takes two or three weeks for a referral to be processed. Yeah, yeah, hurry up and wait.

out, damned spots

Alan J. Cairns at the Pender Harbour Health Clinic was my general practitioner because, when I needed to see a doctor, he was unfailingly the first available appointment.

Go back a few months, and I'm looking for results of a CT/CAT Scan done at St. Mary's Hospital, looking for a reason for nausea and pain in my gut, which I'd been trying to get sorted out since May '09.

"Well," said the good doctor in his rolling Scottish brogue and with a whiff of tobacco smoke on his breath, "You have a bit of emphysema but that will show up in anyone who's smoked for a long time. And," he continued, peering over the top of his glasses at the computer screen, "There's a wee spot on your lung. Likely scar tissue from pneumonia or bronchitis, or maybe TB."

"But, I've never had any of those..."

"Lots of people have them and don't realize it, or you could have been exposed to TB and never got sick. If you're concerned about it, I can set up an appointment with a specialist." This doctor had already assured me, several times in the previous months, that I did not have cancer.

Whatever. I left with a morphine prescription refill and a new one for yet another medication for IBS (irritable bowel syndrome), which the good doctor was convinced was my problem in spite of my protests that I didn't have any IBS symptoms. I was pretty much bed-ridden these days and hadn't worked since June.

Long story short, I dropped Cairns to sign up with Dr. Ingrey, the new kid on the block who seemed to have a brain and didn't seem to have a drinking problem. Ingrey was concerned about the wee spot on my lung, and he got me in to see a thoracic surgeon in Vancouver in less than a month. This in itself is a bit of a medical miracle; in British Columbia, it's normally at least three months until one gets to see a specialist.

Dr. Ken Evans gently explained that my wee spot could be cancer, and got me a PET Scan (positron emission tomography) tout suite at the BC Cancer Agency. I didn't get the feeling, as one often does in a doctor's office, that I was wasting his  valuable time. He understood that a visit to his Vancouver office was an all-day trip for me, so he volunteered to fax results to Dr. Ingrey, home on the Sunshine Coast. Yes, I think he's a sweetie.

A PET Scan shows wee spots, tumors and suspicious areas as "hot spots" or "cold spots." Hot spots are cancer, cold spots are a sigh of relief, all revealed without a biopsy or other invasive testing. Big needle through my chest to rip out a piece of my lung, or a relaxing lie-down on a cushioned table and the soft hum of high technology? No contest. I want the PET scan, and I don't care if I glow in the dark for a month!

PET Scans involve an injection of radioactive dye, then imaging in a machine not unlike the CAT Scan. I think of it like a high-performance CAT scan, one on steroids. The worst part of the procedure was having to lie perfectly still for the duration of the scan, about an hour in my case (it's often longer). As soon as you're positioned and begin entering the scan tunnel, of course, your nose itches. You cannot scratch your nose. You must lie perfectly still.

My good friend Jane drove me to Dr. Ingrey's Sechelt office on January 12 for the results. They weren't so good. Hot spots indicated cancer in my left lung (three tumors), lymph nodes at my left collarbone and right abdomen, in my spleen and in my bone marrow. Cancer.

I felt sorry for Dr. Ingrey. He was careful in delivering the information, and I could tell he knew it was tough to take. I succeeded in not breaking down. I told him I was in a state of controlled panic and needed a prescription for a strong sedative so I wouldn't fall apart completely. He wrote one for Ativan (lorazepam), a fast-acting little sublingual pill in the benzodiazepam (Valium) family.

Jane got the news first, then my prescription, Master Card and an order for a carton of Export A Ultra Smooth.  No, this wasn't reckless. With possibly only a few weeks to live, what was the point of quitting?

Reckless was asking my friend to fraudulently use my credit card and forge my signature. I didn't think that one through. I would have been stuck in Sechelt, a half-hour's drive from home, with no drugs and no cigarettes, while she was taken to jail. No, this was not at all  a good situation.

But, the day was not to be all bad: Jane got away with her crime of credit card fraud and so I got to have Ativan and cigarettes, and a ride back to Pender Harbour.