The Good News About Cancer

According to the Ladies' Home Journal writer Susan Crandall, (May 2010), my friend, Virginia Garner, pictured above, is a member of a small but growing contingent of cancer patients who now have the privilege of living with metastatic or otherwise-incurable disease for years, even decades. Crandall reminds us that famous cancer patients like Lance Armstrong and Elizabeth Edwards keep cancer at bay and continue to live fairly normal lives. She says, and I think we all agree, that while the road may be a rough one, most of us are pretty grateful to be on it at all.

Targeted therapies like Gleevec, Herceptin and Avastin have redefined survival. Crandall quotes Paul Richardson, MD, clinical director of the Jerome Lipper Center for Multiple Myeloma a the Dana Farber Cancer Institute, "Targeted drugs are less toxic to normal tissue; they reflect a better understanding of the biology of cancer." Cancer is also being attacked now by combining targeted drugs and using some of these drugs in a new way - as maintenance therapy to keep cancer from returning.

Crandall admits that while new drug therapies give patients new hope, patients have to balance gratitude with uncertainty about the future. Many of us know that we are always just about two steps ahead of the research - and we never want to have to take one step back, do we?

Anyway, the fun part of the article for me was this --- she describes Virginia as a "COMPETITIVE RUNNER." We got a chuckle out of this. My friend, Virginia, is a wonder woman and HAS done about ten marathons, but running is rare while RACE WALKING RULES !!!

It's a great article and it's also great fun to open up a magazine and see a familiar face. If you would like to read the entire article, go to:
http://www.lhj.com/health/conditions/cancer/the-good-news-about-cancer/?page=1

The Sandwich Generation - Who's the Kid Here, Anyway???

Do you find yourself caught in the middle? Mom and Dad have reverted to childhood - bickering and bothering each other while the kids are still draining your wallet. I started the day with $35 in my purse and ended it with $1 and an accusation from my 76-year old mother that I am keeping secrets from her and not telling her what medications she takes and what they are for. OMG, it's not like I haven't explained them to her a dozen times, holding each one up and describing it as either "a little white football" or "an orange coated ball with the initials SJ printed on it," or whatever..... I even reminded her to check the cover of the three-ring medication summary binder where I have listed each med, it's brand name, generic name, pronunciation and simple explanation of what it is for.
That's pretty secretive.



Patience is not optional when you care for an elderly parent. The loss of control that comes when all of life has changed after a stroke or major illness is monumental. It's so hard to let go and let someone else take care of everything they have done for themselves all of their lives. Patience. And boundaries. Reorient them to reality. Reassure them that you and everyone in the family is working together very hard to care for them and meet their needs.


In the meantime, daughter Allison negotiated the purchase of a pair of shorts and needed to be paid for her chores. Good job, Al.


I'm going home and going to bed. You old folks and young kids can duke it out without me.

Cooking Class for Special Needs Teens

Parents of special needs children need to help each other out. My friend, Susie, is a saint. She's a seasoned girl scout leader and she decided to apply her girl scout skills to helping our little rag-tag group of special needs teens.

We tried a community college cooking class. It was a disaster. There were too many kids with anti-social and inappropriate behavior in the class. The teacher was very young and totally not prepared to deal with the behavioral issues the kids brought to the room, the large class size, and the teaching of cooking. The kids would sit at a table for 30 or 40 minutes waiting for their turn in the kitchen. Once there, they would make some stupid dish like fruit roll-up sushi - all sugar, no nutritional value. How did that teach them self sufficiency? It did not.

Parents of special needs kids know the struggle of finding appropriate classes and activities for our kids. It can be a disaster.

Susie decided to hold the class in her home. Our venue. Our kids. Our menu. Together with the kids and moms she sets the menu and estimates the cost of groceries. We all pitch in to pay. Foods like mac and cheese, grilled cheese sandwich and soup, eggs and bacon, grilled chicken caesar salad. Real food the kids could easily prepare if they needed to feed themselves, which, God love 'em, we all pray that one day they WILL be feeding themselves. They learn to read a recipe, measure ingredients, use kitchen tools like a shredder, can opener, wire whisk, colander. They set the table, play games that reinforce table manners, and CLEAN UP the table and kitchen together. Each teen is assigned a task and they are encouraged to help out somebody who is struggling with their task. They hold accountable the kids who are not pulling their weight in the group project. It's an awesome group.

I nominate Susie for mom of the year. She is the BEST.

Today is where your book begins. The rest is still...Unwritten by Natasha Bedingfield

An Inside Joke for CML'ers

A big belly laugh is the BEST medicine

How often do you laugh? Double that, triple it.

I belong to a leukemia support group. When I was invited to join the group, I declined. I couldn't bear to think about sitting around with a bunch of dying people crying in their beer. My friend, Gail S., made me promise to give it a try.

Ha! You should meet this group of poor, weak, sick, fatally ill people. They are a riot!!!! Together, we tell jokes, pull pranks on one another, make irreverent comments about our evil foe, the cancerous white blood cell and his devious sidekick, the Philadelphia chromosome. We are cancer patients who are embracing life, laughter and the pursuit of happiness in the midst of very difficult circumstances.

Laughter releases endorphins and stimulates the body's immune responses. The best medicine?? If I could, I would bottle it and sell it.

Valentine's Day is Coming - Thank Those Who Care For You

This is the month for telling folks that you love and appreciate them.

Those of you who love and take care of us cancer patients sometimes feel overwhelmed, concerned, angry, lost, or helpless. Much of the time you probably endure the helplessness silently and without complaint.

Please know that we understand this. We recognize and deeply appreciate the incredibly high price you pay for loving us. Every victory we have is yours as much as it is ours. (Like when we get a really good lab report or realize it has been TWO MONTHS since we've needed procrit and neupogen (wooo hoo!) )

It has been said that the greatest gift is to lay down one's life for another. We know that you often choose to sacrifice, to put your lives on hold, set your lives aside while we fight for ours.

From the bottom of our hearts we love you for this!

Mike

Mike turns 73 on February 19th. His daughter, Tammy, was one of my close friends. I've tried to do right by Tammy and take care of her dad since she's not here to do so.

Mike is diabetic, on dialysis, and has major cardiac disease. He is what we nurses affectionately call a "train wreck," a patient who has several body systems functioning sub-optimally, each one affecting another. It takes a monumental effort by Mike and his doctors, dialysis nurses, home health nurses, pharmacists, physical therapists, and friends to keep his body balanced and functioning.

The human body needs protection. It is very basic. The body's largest organ and it's best defense against infection is the skin. How basic is that?

Another very basic fact about the human body: It needs fuel: protein, vitamins, carbohydrates, fats and fluids. It is essential that we view food as fuel for the body.

My heart goes out to diabetics and those with advanced renal failure and cardiac disease.

While food is essential to their survival, most components of the American diet can be their enemy.

When I was diagnosed with blood cancer five-and-half years ago I quickly realized that while the doctors prescribed chemotherapy drugs to knock out the leukemia cells, the medicine couldn't do everything. I had to take responsibility and do my part. I had to keep my body strong and keep it fueled and fine-tuned so my medicine could do it's job. So I joined the Leukemia & Lymphoma Society's Team in Training and became a triathlete, a cyclist, a marathoner. Don't get me wrong...I don't profess to be a big, FAST he-woman athlete. As I always say, I'm not out there on the course to compete, but rather to "COMPLETE" the course as my way of facilitating the control of my disease.

The human body needs the human brain to take control of the situation and provide appropriate fuel, fluid, and fitness. Bottom line. We need to be responsible. We all had a free ride when we were young and disease-free. But not anymore. Don't fool yourself. It's up to you. Be responsible for yourself.

In Mike's case, he has an army of professionals, friends who love him, and a dedicated brother who is pitching in and doing cartwheels all around him to help him be successful and keep him going. I want so much for him to have an "ah-hah!!" moment where he realizes that he really wants to hang in here with us and make this work. No more fast-food. No more canned or processed foods. Hold the salt. Hold the sugar.

If you will, take two points from this rant:

Be responsible. Take control of whatever you can control in your body to tackle your disease.

My suggestion: Eat live food. Fresh veggies, fresh fruit, grilled protein, whole grains, complex carbohydrates, polyunsaturated fats. Small plate. Split the plate in half. One half green vegetables and fruit, one-quarter protein, one-quarter carbohydrate. Basic. Simple. Just do it.

Okay, that's two. Here's one more: I used to say to myself, "here I am doing everything I can to stay alive, and my body is trying to die on me." I don't know how long it was before I realized that was entirely not true. My BODY was designed to live. The cancer was an invader, an outsider, a vigilante set out to destroy.

Maintain the proper perspective and make sure you stay on the right side of the aisle. Work with your body. You don't want to end up being your own worst enemy.

My friend, Mike, walks a tight-rope. It has taken a lifetime for the diseases to take over his body. And now he's supposed to change a lifetime of bad habits overnight. It takes concentration to stay on track.

When you are fighting a disease and trying to save your life, eating is not a social event, an activity, a chance to feel satiated, gratified, stuffed to the gills. It's basic survival.

Eating right can be empowering. It fuels your immune system to fight back. We become so weakened by poor nutrition that it's like trying to fight cancer or diabetes with sticks and stones. Give your immune system fuel. Hold your own. Fight back.

And keep believing..............................

Taking the Plunge

I have thought about this for a year and half. My need to share the things I know. The help I may be able to offer to others. A belief that there is no place like hope.

Before cancer I never considered my everyday thoughts as something I needed to do battle with, rage at, fight for control over, or learn to master. A thought simply "was." I now know that we can alter, we can rein in, we can lead our thoughts to a better place than they may automatically choose to go. We can actually train our everyday thoughts to be our biggest allies and work for us, not against us.

Along the way I've added lots of arrows to my quiver. Bits of information. Shreds of knowledge. Maybe beneficial to somebody out there struggling. Cancer can be lonely. The healthcare world can be scary. Dealing with insurance, frustrating.

So here we go. Probably disorganized. Maybe rambling. No whining. I'll put it out there. If you can use it, please do so.