My Little Cancer Doll

I'm writing this very quietly. You can hardly hear my fingers brush the laptop. The person in the next room has cancer -- big time. Today she's not in the mood for noise, so I have to be quiet, but I want to tell you how to handle it when your girlfriend or wife gets it. But lean in close because I don't want to wake up Diane.

The first thing that happens is she feels a lump in her breast. A lump can mean anything, but you need to make her go to her doctor. How quickly it happens; the doctor feels the lump on a Monday, orders X-rays and a mammogram, and on Friday afternoon, you go back with her to the doctor's office. You wait in the kids' section reading The Cat in the Hat. She emerges. She's reserved, unsmiling, dignified as she puts on her long coat. Only when you get out of the elevator does she tell you the doctor said she has cancer and, due to the nature of the tumor and swiftness of the growth, there's a probability that it's terminal. And it's short term.

By the time you hit the street, your legs feel like rubber. She marches up the hill ahead of you, telling you to hurry up. You can't believe she's not physically affected by the news. You hurry to catch up. The end of the block seems an infinity away, like you'll never reach it.

In a graveside manner, the GP told us the months ahead would involve much pain and suffering. She said she had one patient with the same symptoms. Diane asked about not having chemo, surgery and radiation and living a shorter length of time but possibly with more dignity. It must be her decision.

A deal is struck: She agrees to stick it out for six months -- to at least show her family and friends that she is trying -- and then it will be time to reassess.

We spent a quiet weekend in stunned shock, but at work on Monday afternoon, she got an unexpected call: Be at Lion's Gate Hospital at 6 o'clock the next morning for the lumpectomy (that is, immediate removal of the offending lump and surrounding tissue).

A number of lymph nodes were cut out, which were located in the tender pit of the arm. It was painful, but not radical, surgery. That's the good news. The bad news was the pathology report afterward.

The cancer had spread from her breast into her lymph nodes. The lymphatic system will spread it rapidly, and already it is an aggressive strain -- number three on the scale, with number four being the worst -- and they didn't get all the cancerous cells. This was confirmed in a visit to the surgeon's office. Now she was in pain from the surgery, but this was just the overture to a suite of suffering.

At home, first comes a wave of flowers, then of cancer books. The cancer books say everything and anything and are all over the map. Let her pass on to you whatever random information she gets from them. It is information she has gleaned and feels is important, and just sharing it is a comfort to both of you. This is not to say you shouldn't learn about cancer -- you will, by direct experience. But there are so many cancer books that what they say is unknowable by one person, not to mention contradictory.

Nevertheless, cancer books have another important function. They lead you to understand cancer is not an exact science; it's more like literature. It is subjective -- a land filled with opinions. To you, as a male caregiver, that is Lesson No. 1: Don't let yourself be devastated by bad news. Cancer is a matter of opinion. Get another one.

We did. We met with the first oncologist, who confirmed all we'd heard before and who suggested an immediate, radical mastectomy to be followed by chemo and radiation -- this news delivered with a rictus expression. It seemed brutal. Slash and burn. Too much too soon too fast. It felt wrong.

Follow your heart and don't be afraid. Get another opinion.

The following Monday, at her GP's suggestion, a second oncologist looked at the test results and confirmed that yes, this was extremely serious. But with luck and treatment using a different approach, Diane had a 70 percent chance of survival.

What a difference a week makes. On Friday afternoon, she had a death sentence. A week later, she has a seven in 10 chance of living.

But now things were on an emergency footing. The treatment began the following week, with a wait of only three or four days filled with rapid tests. Still, the prospect of chemo every third Friday for 24 weeks throws a shadow like Mount Everest.

Meanwhile, the first oncologist plunged ahead with his own plans, scheduling a radical mastectomy without her consent or knowledge. The day after we met with the second oncologist, we got a call from the first Oncologist's assistant informing Diane she was scheduled to have her breast removed the next day. Also included in the call was a mortal blow: It was thought that the cancer had spread to her liver, and a CT scan was immediately required to confirm it. Any patient with advanced metastatic liver cancer has almost zero chance of survival. Often, treatment is not even considered.

In the middle of this phone call, with dozens of questions left unanswered, the line went dead and we couldn't get back through. Apparently, an hour after placing the call, the first oncologist's assistant went on vacation for a week and no further information was available.

Nevertheless, the second oncologist used pressure and influence to have the CT Scan done the next day. We bit our nails waiting for the results. Five days later, I sat in her GP's office pretending to read my favorite book, The Cat in the Hat, but I was praying. Finally, the door opened a crack. Diane stuck her head out.

"No liver," she whispered.

So, it was a mis-diagnosis. For the second time in the same waiting room, I sagged with relief at the news she was not going to die right away.

We only waited two weeks to begin chemo. Even during that time, she visibly declined. She became cold and fatigued as the aggressive cancer spread. Stage 3 cancer is like being eaten from the inside by an alien being; it grows so fast that it drains life from the victim to sustain its feeding habits. Every minute seems to count. As a caregiver, you must push the medical system with every ounce of your strength, every day, or make sure she does. Some days it's hard to figure out which is more draining, the disease or forcing the medical system to treat it.

Friends and family now lined up to help, driving her to tests since she could no longer drive. They did everything they could think of, laying on stacks of magazines, shopping for the elusive comfort food, and just listening. On many occasions, I got panicked phone calls. To Diane, the chemo was pure poison. Without being a granola-headed, Birkenstock-wearing purist, she had tried to live a healthy lifestyle and lived by a spiritual philosophy of "listening" to her body, attempting to treat it with respect in every way. The conflict presented -- deliberately injecting these fluids into her body -- was a compromise that was tearing her apart. I kept reminding her that there was a beginning and an end to the treatment. All would be well, and so many people loved her, I was confident that it would work. I talked her down many, many times. This was a roller coaster ride for both of us, and it was just beginning.

There is a generic chemotherapy warning label given to caregivers. It reads, in full: "SIDE EFFECTS, that may go away during treatment, include difficulty sleeping, mood changes, nervousness, increased appetite, or indigestion. If they continue, or are bothersome, check with your doctor."

Then she was thrown into the chemo inferno. Chemotherapy should be called Poisontherapy. It poisons the cancer, the body and the mind. The day after her first treatment, Diane was holding her own. Maybe this won't be so bad after all, we thought.

On the second day, it was my turn to be caregiver. I rented videos, bought fresh sole and spinach and even some wine as she seemed to be almost normal on the phone. On the other hand, I also brought Gravol suppositories, Boost, and lemon candies to get rid of the metallic chemo taste in her mouth. I even laundered my clothes so I wouldn't carry any nasty, sickening human smells to make her sick. I was due to show up at 6 o'clock. I was 10 minutes late.

She exploded. Ten minutes late was not acceptable. She was now on a strict drug schedule. The pills had to be taken on a rigid schedule, with food, and she had excruciating stomach pain, which was exacerbated when she didn't eat exactly on time.

Bothersome mood changes? The Chemo Mood Swing is like a wrecking ball. I was stunned that all my preparation was cancelled out because I was 10 minutes late delivering it. I fought to concentrate on a single fact: This was the cancer and chemo talking, not her. Writer Hunter S. Thompson once said, "You can turn your back on a person, but never turn your back on a drug." Chemo is a bad, unpredictable drug. It treats victim and caregiver with equal abuse. Add to this the fact that menopausal women with cancer are immediately taken off hormone therapy. So, what you've got is a woman poisoned by chemo and fearing for her life. Suddenly, adding PMS-like, menopausal mood symptoms is like tossing dynamite into a live volcano.

I walked around the kitchen like a robot making dinner -- nourishing, tasty comfort food. But now, mixed in with the cancer, there was tension in the air that never really left. Yet, no power on earth could make me fight back. No one in his right mind argues with a person who is this sick. Lesson No. 2: If you are a male caregiver, your instinctive response is to fight back. Don't. It's tough to win an argument with a woman, but it's impossible to win an argument with a drug.

This brings in another element, which you, as a male caregiver, will have to face: your own flaws and weaknesses. Believe it or not, as a man, you might not be perfect for the job. I made what is probably the most common mistake of all. Day after day, I took the abusive behavior personally. This triggered the onset of depression. I already suffer from low-level chronic depression and had been underemployed for some time, a fact that fuelled it. Now it spiked. Sometimes we walked a fine line as to whether I was actually doing any good at all being there. Severely depressed people are like keeping dead flowers in your room. It was a day-by-day call.

Over the last couple of years Diane has been a witness to my depression and has pushed me to get all of the professional help available. I have followed through, although sometimes all the professional help in the world doesn't work when you are semi-unemployed and broke. The condition can make the future look bleak and hopeless. Add to this the responsibility of caring for someone you love, who is affected by a diagnosis of cancer, drugs which cause anxiety, ongoing pain and fear. Make the mistake of taking it personally and the world turns a grayer shade of pale.

In the meantime, you both face an abyss of medical knowledge. No one can tell you how sick she is. And after she starts chemo treatments, it basically is a minute-by-minute watch until she falls asleep from exhaustion. When she does, it's a blessing. You know her body has retired to fight the disease full tilt.

The next morning, she was really sick. I spent my time cleaning what seemed to be an endless supply of dirty dishes and trying to be quiet. At noon, I made clear chicken broth with few bits of pasta. For dessert, I prepared tangerines over cottage cheese with a touch of honey -- but not before her daughter phoned to remind her to ask me to leave something out for her lunch.

As an amateur male caregiver, I bristled at being given instructions. This might happen to you. Try not to resent it. Put male pride aside. The person you are caring for is in fear for her life, as is everyone else in her family.

The following morning, she became nauseas at about 10:30. I made chamomile tea, poured ginger ale and waited. She seemed to want to sleep on the couch, so I turned the TV off and went into the kitchen to clean up. And in a dead-quiet house with a cancer patient in it, every dish and pot makes 10 times the noise it's supposed to. It's like you need special rubber, noiseless dishes. It turned out the noise didn't really bother her, but by then I was so tense I was hypersensitive to noise myself. After about an hour, I was finished. She got up and walked into the kitchen and said, "You'll clean up a little bit in here before you go, won't you?"

This is another land mine you've got to avoid as a male caregiver. Men and women see dirt differently: It hides from men, but presents itself to women as if were a dust ball starring in a play. And chemo exaggerates the difference 10 times. Don't argue. Do your best to clean the stage.

At about 11:30, I made consommé with a few noodles, but she didn't want it anymore. She'd developed a pain in her stomach. It was too low in her abdomen for the hiatus hernia she had, and the pain was on a scale of about five out of 10. I wondered if it might be the beginning of an intestinal blockage from infection, but what did I know? Then a cold sore blossomed below her lip, which would be followed throughout treatment by many more.

The next day, I found myself walking on eggshells -- that `You-can't-do-anything-right' feeling that makes people trip over themselves trying to do a good job. Around 12:30, after listening to me moan and sigh unconsciously but constantly, she said this might be too stressful for me and she was going to call her daughter to come for the rest of the day. We waited for an hour under the strangest tension you can imagine.

The next day on the way to Diane's to cook her dinner, I stopped at Shopper's Drug Mart to pick up Ex-lax and prune juice. I was now known at the Pharmacy as "the cancer guy." It was a difficult night, followed by a difficult morning.

I woke at 3 a.m. to find her sick and unable to sleep. Insomnia is another side effect of chemo. She was listening to BBC World News on low volume to pass the dark time. Five hours later, I got up and made her a poached egg but couldn't face the thought of food myself (proving, I suppose, that sometimes the caregiver can feel worse than the patient). After that, it was largely a matter of sitting around and waiting to see if something as inoffensive as a poached egg stayed down. Finally, I went to lie down and fell asleep.

When I woke up, she was cleaning up the kitchen because she couldn't stand the disorder. Then, of course, she had to sit down because even that little bit of activity made her sick. She tried to make herself ill in the toilet, but that failed. (The only thing worse than making yourself sick is failing at it.)

She ended up sitting on the couch. Finally, she broke into tears because she felt so utterly miserable. Imagine feeling so awful that the only thing left to do is cry. I talked her into going back to bed and then was at a loss as to what to or say.

I tried to be cheerful. "This is the fourth day," I said. "The side effects are only supposed to last four days."

"I just got an email from my doctor," she replied. "They can last a week."

And that was only from the first chemo treatment; she had seven more to go.

Her mouth and throat filled with canker sores. The ubiquitous hot flashes left her pajamas and sheets soaked before her feet touched the floor in the morning. Yet, ironically, she suffered from achingly cold hands and feet.

Because of the severe stomach pain, there were now many foods she couldn't eat. I made potatoes and yams whipped with milk and a bit of butter. That stayed down, and there was so little left on the menu it had to be regarded as connoisseur fare. She called it `comfort food mecca.' It was homemade baby food.

I escaped back home for a few hours every day to try and earn a living and to decompress. In the afternoon, I phoned to see what time she wanted me to come back to prepare dinner and keep her company. She told me she'd been going over some insurance papers for the banks, which ensure her loans are paid while she is sick. On one form, the doctor had written, "This woman will never work again." As she read it, she burst into tears on the phone.

That's another side effect you have to be ready for: Anxiety attacks and sudden crying can be set off at the drop of a hat. Usually, these catch the male caregiver totally off guard. The key here is to nod, listen, repeat and agree with everything she says, then try and put it in perspective. You'll get better at it each time.

She settled into the drill of chemo torture every third Friday. She was flat on her back for four days, and then slowly recovered over the next two and a half weeks. Just about the time she was feeling decent, they would give her another blast of chemo, and the Wheel of Pain started over.

The next treatment brought a sharp, aching pain throbbing through her leg. As I massaged her, we worried about it. The oncologist said the pain had nothing to do with the chemo or cancer, but every twinge is suspect and a matter of opinion. On the bright side, I'd learned to wash the kitchen floor the way she liked it, though I never did master the kitchen cleanup duties. Eventually, she asked if I needed glasses to get the dishes clean.

We went and purchased a wig because now her hair was falling out. Ironically, I took it as a good sign the chemo was working. She had private insurance that covered the cost of a wig, and she was determined to have one. Lesson No. 3: Make getting the wig fun, and keep it light, like a day trip to a hair loss amusement park. After some serious sittings and fittings, we found exactly the right one. She and the wig seller consulted deeply over the issue like a pair of fortunetellers. The truth? Even the high-end wigs looked like a dead animal perched on her head. She never wore it afterward, except once for a cancer humor photograph, and then I wore it and she took a picture of me too.

As her male caregiver, you'll find she looks much better bald than with the wig. Also without eyebrows, eyelashes and everything else. Eventually, you both forget about it and go about together.

But you are noticed, and you notice others. It's like buying a certain model of car: If you buy a 1996 Oldsmobile Cutlass, suddenly you notice all the other 1996 Cutlasses on the road when you didn't before. Now you notice all the other bald, wigless women walking around wearing bright, fashionable cloth slouch hats. In Canada alone, 407 Canadian women are diagnosed with breast cancer every week. They are everywhere.

While I fought off the effects of depression, Diane's reaction to the chemo was getting worse. I couldn't go to see her at all for a week. She was too sick to have anyone there. Finally, I went down Friday night, all Saturday and most of Sunday. She was feeling better, but I didn't know how she was going to handle the next round of chemo since the last one nearly killed her and each one had made her weaker.

We tried to put in a day of gardening, but the weather was impossible -- blowing and raining and cold. Instead, we drove to a nursery and bought some soil and roses, then came back, and she ran out of steam. Suddenly, she just broke down because she felt weak and sick and had to go into the house instantly.

Be prepared for this. She might want to go for a walk, and that's good news. Seize the opportunity. But then she might only walk for a block and a half, holding your arm like a little old lady. Or, you might go shopping together and halfway through Safeway, she has to go out and sit in the car and rest. It drives the point home: The battle is far from over. You don't know who's winning -- the cancer, the chemo or the devil himself.

Finally, the last aftermath of the last chemo treatment. I spent Saturday and Sunday taking care of her, but the real crunch didn't hit until yesterday, when the last of the chemo antidote pills wore off and she changed from hyperactive to sick cold gloom. I gave her dinner and had a little bit myself while she shivered on the couch.

Yet, we had two major victories, simultaneously: The chemo was over, and radiation was about to begin. Sixteen consecutive days of zapping (weekends not included). While chemo is the emperor of pain and craziness, radiation is its weakling little brother. Still, she was terrified of it. The male radiologist was a blizzard of facts: "On average, 102 Canadian women will die of breast cancer every week," he informed us. "One in nine women is expected to develop breast cancer during her lifetime." "One in 27 will die of it." "But with radiation, your chances of getting cancer back are dramatically reduced. In fact, after radiation I will have a greater chance of getting cancer than you. My odds are currently one in three."

In the Keno game of cancer, I assumed my odds were one in three too, yet this still was good news, although gloomily delivered. Targets were tattooed on her breasts and upper body for the radiologist to aim at, and soon the burns blossomed. More good news: It was recently announced that radiation is now more specific so it doesn't burn the heart and lungs as much.

But now, as the lingering effects of the chemo poison wore off, spring arrived. With it, I discovered a secret weapon: distraction.

Here's what you do. Plant tomatoes and basil in vast amounts to let her know she will still be alive to enjoy them by harvest time. Describe the wonderful things you'll eat together. It's not hard. Home-grown basil and sweet, garden-grown cherry tomatoes are vegetable candy. Even the anticipation of getting this treat contributes to the frame of mind of the cancer victim. The more you talk about it, the more they can't bear the thought of missing it, so it adds to their will to live. As the chemo leaves her body, the tomatoes and basil grow, somehow enhancing the healing effect. When we went out into the garden to tend these growing gems, I became hungry just being near them. I couldn't wait, and the enthusiasm is infectious.

The other thing is to grow roses. This sounds dumb and idealistic, but it works. Go out and carefully choose six or seven rose plants you're both wild about. (Don't worry, sick as she, is she will love using her bit of strength the day you go out together and choose one or two.) Don't do it all at once. It should take at least three trips to different nurseries. Then, dig the rose garden, which she will be happy to supervise from a chair because she still can't stand for long. You pick-axe axe through the lawn and create a bed as specified to her exacting instructions, putting down the hidden watering hoses, laying the gravel. But as for the roses - chocolate-colored, terracotta, as purple as a stockbroker's tie -- the wilder the better. They produce blooms this first season, but what about next year? The house will be filled with exotic, fragrant blooms. It's an unspoken agreement: You will live.

She finished 16 radiation treatments, then went for the mastectomy and a reduction of the other breast. She asked if I had any final thoughts before surgery. I couldn't think of anything wise and comforting to say, so I requested they center her remaining breast. She had the nerve to pass this information on to the surgeon, who roared with laughter.

But there was a critical moment. The night before the surgery, I ran into someone who belonged to a prayer group in Surrey. I paid her $5 to have her prayer team concentrate hard on Diane at 8 o'clock the next morning, when she'd be in the operating room. Then, I did some praying myself. Unknown to me, there were prayer groups adding their support through her co-workers and friends who attended church on a regular basis. On the eve of the operation, her cousin lit a candle in prayer in a Cathedral in Napoli.

There was almost a drum roll when the doctors announced they'd found no more cancer. It was like we'd beaten some nine-stories-high Godzilla to its knees.

Her hair is growing back nicely, and she's been accepted for the two-year Herceptin trial, which dramatically reduces the chances of a recurrence. The Herceptin trial is global -- a person can travel to any major city in the world and get a treatment.

She will live.

Taking care of a woman with near-fatal breast cancer isn't the hardest thing; it's nothing compared to the mistake of allowing yourself to be deceived by the disease and the drugs, and believing your efforts are discounted or unappreciated. There is no feeling on earth like the sting, isolation and wilderness you enter. You might as well be on the dark side of the moon. The tragedy seems to compound itself hour by hour, irrespective of the medical situation, until the days ahead -- for whatever they are worth -- trail off to nothing like a poorly drawn pencil line.

In my opinion, she was cured despite my best efforts; she ended up supporting me. Try not to make the same mistakes. A man taking care of a woman with cancer is more than making a few pots of Echinacea tea. Count your lucky stars you know that now.

One more thing: During the whole horrendous experience, the person with cancer has nothing to do but sit around alone all day with cancer, chemo and the fear of death bubbling up through her veins. They dwell on, crave and treasure things that seem petty and everyday to us. Which brings us to the fourth and final lesson: When you're on the phone with her, never hang up without saying "I love you."

David Jenneson is a freelance writer based in North Vancouver, B.C. Canada. Contact him by e-mail at dmail@telus.net.