A Medical Odyssey that Concerns 1 in 3 People Worldwide.
Cancer affects 1 in 3 people worldwide. Few people get beyond the taboo of the topic however to address the concrete issues of how a life-threatening disease can affect not only those afflicted but family and friends of the cancer patient.
Here is a personal journey on the medical odyssey of learning about cancer first-hand and learning how to cope to keep a family united and emotionally healthy during difficult times. It’s about a Mom with teenagers living in Switzerland, but it could be about so many people around the world. It’s a true life portrayal of a Diva International journalist—me.
"When your children become teens you no longer walk, escort, or take them to school; they’re more than happy to be « dropped off. » After dropping mine off on Friday. April 11th, I walked the dog and had a few minutes free before my favorite dance aerobics class started. I had not heard the results of my blood test so I stopped by my GP, Dr. S’s office to ask, « If it’s good news, don’t rush, but if it’s bad, please tell me. » The results were in but the doctor was out. She could only be disturbed during her « pause caf?. » The results arrived several days before, but Swiss medicine was not shining at its best. No one was troubled to communicate the urgent news.
Against what doctors are taught worldwide and all acceptable medical protocol, the news came on my mobile phone from the doctor’s secretary who was crying out « Leuc?mie! » She caught me buying hotdogs at IKEA—an afterschool snack for the « guys ». I was in shock and couldn’t speak. I remember only the despair in her voice when she blurted out «Vous avez la leuc?mie avec 68% blastes dans le sang ! »
What she was saying was the 68% of blood cells were running amock through my body were cancerous. I could have driven myself into a wall, but instead filled an empty gas tank, drove home, called the doctor’s office one minute before they closed again for the day and pleaded with them to let me have a copy to get urgent medical care. I had been mistreated a month before by Dr. C. of s prestigious Clinic, when he found no reason to pursue blood tests on someone he could not gainfully operate on. « It’s a local infection or lymphoma, » he surmised as he walked away.
What to Do?
When doctors fail you and your family support structure is frail, what to do? I called Marianne—a friend who survived cancer. Her advice was short—« Get to the Lausanne University Hospital (CHUV). » It took one second for the secretary to respond with the kind of speed professional care gets its name for. « Get this lady into emergency! » A few hours later I was diagnosed with Acute Myelo Leukemia. Now according to statistics of this life-threatening disease, I should be a 67 year-old man.
With a 50% chance of living, I’ve been working on getting better in an isolated « clean room » at the Lausanne Hospital (CHUV). I see Spring blossoming from my window but can’t leave the room and remain hooked to a Christmas tree of bottles filled with chemotherapy, antibiotics, blood, platelets, food nutrients (because « chemo » is the fastest way to get too skinny quickly), and the latest injection—Vitamin K.
« Chemo »
After 100 days of « chemo » treatment I hope to receive from my brother or sisters a bone marrow transplant at the Geneva Cantonal Hospital (HUG). If all works out—and that is not a given—I will be able to go home but not yet be able to visit friends, go to a restaurant, shop for food, go to a movie or a play. nor get my dog back. With zero immunity, everything and everybody is a risk as I have no white blood cells to fight infection. Not yet anyway and I am mustering all my courage to get those cancerous white blood cells out of my body for good!
Denise Advises on Helping Children Cope
Denise Bouvier, who is a clinical psychologist working in Nyon, kindly gave me advice about how to specifically care for my boys Andy and Sammy:
Don’t avoid the subject. If the nurses or doctors enter when your family is there, introduce them as the team that is helping you get better. Ask the medical team if they could explain to the children a little about what they are doing and why. It’s very reassuring for spouses as well as children of all ages.
At home and school, continue to do the same things: invite their friends to your homes, etc. and do even "a bit more" if possible. As we approach the long summer days, the families of your children’s friends may consider including them in their plans. One group of mothers has started an email and call program that helps keep an eye on how the kids are doing while advising on wigs, inviting the boys to activities they would otherwise miss with a parent in hospital, and just being sisters who are only a phone call away.
Don’t field the calls from friends who want to help from your hospital bed! If you are the one who is sick, have your friends call your spouse and ask how they could help at school, with the commute perhaps, or in your home. In my husband’s case, he was reluctant to ask for help, but welcomed the idea of a dear friend Jane who offered to boil the sheets after our washing machine had broken down!
I remember answering friends who asked what they could do. One brought me straws to the hospital so I could drink. Another has a baby and a little boy who might enjoy doing a fun activity with his mom, so I mentioned that if were at home right now, I’d be baking brownies for my kids when they returned from school. No sooner said than done. A plate from Anne and Darius was sitting on the postbox awaiting my hungry boys when they got home that evening.
With teenage boys to feed that is a no brainer. Our Italian neighbor Rosa would not take not for an answer. She jumped in with three plates of delicious and nourishing food from the local auberge every night after school. « It’s simple, » she explained to me husband who was reluctant to accept her kindness, « I’m Italian and that’s what we do in Italy. »
Our home village of Luins has overwhelmed us with their love and care. One group from Dance Aerobics got together for the most unusual gift—to buy me a star with my name on it. They sent glorious SMS messages that I read every night before returning to my hospital bed.
Neighbors have offered to walk our dog so that my husband does not have to drive home from work in the middle of the day. Rosa Marguerat has arranged for professional cleaners to do a major overhaul on the house in my absence. You can’t imagine how much work my husband and boys have been doing getting ready for my intervals between chemo treatments!
To communicate with friends, SMSs work the best and as do emails since hospitals give you Internet access. If you have family living far away or even just to talk to the boys after school, SKYPE has helped so that I can see them. Now that I have lost my hair, I prefer to dress up and put on the wig before I call them.
What Monica Says
According to Monica D’Alan?on, a dear friend and psychologist leukemia patients in Paris, « You won’t drop dead with this illness. You would have collapsed or shown some other symptom that would have led to a blood test. Nobody dies from leukemia "on the spot". It is very common that people drag themselves around fatigued for about a month or often a lot longer before they get weak enough to end up getting a blood test done.
While ensuring you keep your health as parents, it’s important to note that this is still and luckily a rare disease. 200 people in Switzerland and 50,000 Americans come down with leukemia each year. I am not writing to the reader into saying that everyone who gets blood check-ups when they’re leading normal lives is going to discover such a grave illness.
The symptoms to watch for are fatigue, which should be making every Mom and Dad laugh! There are other indicators—my unexplained black and blue marks on my arms and legs had my sons convince that I was into girl’s wrestling or had joined the infamous « Fight Club. »
Monica adds for the readers in Switzerland, «The doctors say leukemia can set in within a week. It’s not very dangerous since you’re in Switzerland and not in Zanzibar! » (Or you can have my health care misfortunes.)
On a final note, leukemia has thrown light on a whole new way to see my role as a wife, mother, and woman. It has given me a different view on people, my husband, my kids and neighbors and the people who can be trusted to be reliable and supportive though it’s not an easy situation for anyone. But I can say that in our case, I have leukemia but leukemia will not have me or my family. The most important thing is to SAVE your strength for HEALING versus dealing with organizing things, worrying about being a super Mom. Writing for « Diva International» is the exception.
Dr. Mary K. Weed