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 By David Jenneson June 25, 2004 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. And today she is not in the mood for noise. So I have to be quiet. But I want to tell you how to handle it when your girl friend or wife gets it. So listen. But lean close because I don’t want to wake Diane up. 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. On Friday afternoon you go back with her to the doctor’s office. You wait in the kid’s section reading The Cat in the Hat. She emerges. 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 that she has cancer and due to the nature of the tumor and swiftness of the growth there is a probability that this is terminal. And it is short term. By the time you hit the street your legs feel like rubber. She marches up the hill ahead of me, telling me to hurry up. I can’t believe she is not physically affected by the news. I hurry to catch up. The end of the block seems an infinity away, like I will never reach it. In a graveside manner the GP has said that the months ahead will involve much pain and suffering. She has 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. Then it will be time to reassess. Bad News Spreads Like Cancer We spent a quiet weekend in stunned shock but on Monday afternoon, at work, she got a sudden, unexpected call. She was told to be at Lion’s Gate Hospital at 6 AM the next morning – to have the lumpectomy. That is, immediate removal of the offending lump and surrounding tissue. And a number of lymph nodes are cut out, which are located in the tender pit of the arm. This is painful but not radical surgery. That’s the good news. The bad news was the pathology report afterward. The cancer had gone from her breast into her lymph nodes. The lymphatic system will spread it rapidly, and it is already an aggressive strain – number 3 on the scale– with number 4 being the worst - and the surgeon didn’t get all of 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 you both. 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 that cancer is not an exact science. It’s more like literature. It is subjective, a land filled with opinions. To you as male caregiver that is Lesson Number 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 had 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 said yes, this is extremely serious, but with luck and treatment using a different approach, Diane had a 70% chance of survival. Cancer is a Matter of Opinion What a difference a week makes. On Friday afternoon she’s got a death sentence. A week later she has a seven in ten chance to live. 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 shadow like Mount Everest. As this prospect sunk home she went and got a final blood test. By now her veins were weak but this was to be expected. Nevertheless, the technician probed and poked mercilessly for fifteen minutes, become frustrated and nervous. Finally he penetrating and destroyed a secondary vein. This resulted in bruising, clotting, infection, and eventually permanent disfigurement of her forearm. It now looks like it has been twisted like a strand of rope. It took a year for the Vancouver Coastal Health Board to acknowledge the debacle, but still they did not apologize. Instead they blandly stated ‘In general, there are no particular steps which the technologist could have advised you to follow to prevent any subsequent events and it would have been difficult to predict subsequent clotting and infection.’ So be warned. If your wife or loved one falls into the hands of a Hospital Dracula, there’s no recourse. Meanwhile the first Oncologist had 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 sliced off 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 that. 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 to be answered, 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 holidays for a week and no further information could be had. 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 while I waited. Finally the door opened a crack. She 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 immediately. We only waited two weeks for 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 it drains life from the victim to sustain its feeding habits. Every minute seems to count. As a caregiver you’ve got to 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 has a spiritual philosophy of “listening” to her body, attempting to treat it with respect in every way. The conflict presented of deliberately injecting these fluids into her body was a compromise which 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 that I was confident that it would work. I talked her down many, many times. This was a rollercoaster ride for both of us that 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. Being Poisoned with Consent 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 she was holding her own. Maybe it wouldn’t be so bad after all. On the second day it was my turn to be caregiver. I rented videos, bought fresh sole and spinach and some 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 six o’clock. I was ten 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 ten 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 here you’ve got a woman poisoned by chemo and in fear 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 their right mind argues with a person who is this sick. Lesson Number Two: 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. It is 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 may 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 under-employed for some time, a fact which fuelled it. Now it spiked. We had to walk a fine line as to whether I was actually doing any good at all being there sometimes. Severely depressed people are like having 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 of 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 that 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 greyer 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 is basically a minute-by-minute watch until she falls asleep from exhaustion. When she does it is 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 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 may 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 about ten thirty. 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 ten times the noise it is supposed to. It’s like you need special rubber noiseless dishes. It turned out the noise didn’t really bother her but by now 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 will 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. Dirt hides from men, but presents itself to women as if were a dust ball starring in a play. And chemo exaggerates the difference ten times. Don’t argue. Do your best to clean the stage. About eleven thirty I made consommé with a few noodles but she didn’t want it any more. She had developed a pain in her stomach. It was too low in her abdomen for the hiatus hernia she has, and the pain was on a scale of about five out of ten. 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- to be followed throughout treatment by many more. Listen to the Person, Not the Drug The next day I found myself walking on egg shells, that ‘you can’t do anything right’ feeling that makes people trip over themselves trying to do a good job. Around twelve thirty, 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 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 Exlax 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 AM to find her sick and unable to sleep. Insomnia is another side-effect of chemo. The 3 AM Shuffle. She was listening to BBC World News on low volume to pass the dark time. Five hours later when 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, and 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 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. 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 decompress. In the afternoon I phoned to see what time she wanted me to come back to prepare dinner and keep her company. She had 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. These usually 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 had learned to wash the kitchen floor the way she liked it. I never did master the kitchen clean up 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 that the chemo was working. She had private insurance which covered the cost of a wig and she was determined to have one. Lesson Number 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 look 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 notice others. It’s like buying a certain model of car. For example, 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 as the last one had 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 up 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 can only walk for a block and a half holding your arm like a little old lady. Or you 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 is 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, had a little bit myself while she shivered on the couch. Watch for Small Victories Yet simultaneously we had two major victories. 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 9 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 1 in 3.” In the game of Keno cancer I assumed my odds were 1 in 3 too, yet this was still 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. Lesson # 4 : Plant tomatoes and basil in vast amounts to let her know she will still be alive by harvest time to enjoy them. 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 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, enhancing the healing effect somehow. 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. Idealistic. But it works. What you do is go out and carefully choose six or seven rose plants that you are 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 you 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 specifications, putting down the hidden watering hoses, laying the gravel. But the roses – chocolate colored, terracotta, purple as a stockbroker’s tie – the wilder the better. They produce blooms this first season, but next year? The house will be filled with exotic, fragrant blooms. It’s an unspoken agreement. You will live. She finished sixteen radiation treatments then went for the mastectomy and a reduction on the other breast. She asked me if I had any final thoughts before surgery. I couldn’t think of anything wise and comforting to say so I requested they centre her remaining breast. She had the nerve to pass this information on to the surgeon who roared with laughter. Cover Your Spiritual Ass 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 eight the next morning in the operating room when she went under the knife. Then I did some praying myself. Although I was not aware of it 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 Naples. To my typical ignorance we had the globe pretty much spiritually covered. There was almost a drum roll when the doctors announced they had found no more cancer. It was like we had beaten some Godzilla nine stories high 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 is 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 may 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 badly 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. Lesson #5: when you are on the phone, never hang up without saying ‘I love you.’ ------------ About the author: David Jenneson is a writer and noveliest who lives in Vancouver, Canada. You may reach him at his website www.davidjenneson.com email: dmail@telus.net Tell a friend about this site! ------------ |
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