Monday, June 29, 2009

The F word

I found this article and thought I would share it with you:

The F word

Fatigue is the most common challenge of cancer -- pervasive, life-changing, and not responsive to rest. But there is an answer

By Julie Mason, The Ottawa CitizenJune 28, 2009

It was laundry day in our three-storey townhouse, and I'd already made two trips between bedrooms and basement.

I looked fine and, if you had asked me how I felt that day, I'd probably have answered "fine." But when the Man of the House found me snivelling at the bottom of the staircase, I was forced to admit I'd succumbed to one of cancer's unfortunate side-effects -- fatigue.

Fatigue is cancer's F word, the most common challenge of the disease. It affects as many as 90 per cent of people living with cancer -- before, during and even long after treatment.

My healthy grandma sometimes said she was "bone weary," and that's a good description of the fatigue from cancer and other chronic diseases. It's not like normal fatigue. It's a pervasive, life-changing exhaustion that doesn't respond to rest.

Walking the puppies around the block feels like a triathlon; grocery shopping is an endurance contest; making a meal requires several rest breaks; even simple things like reading a book or talking on the phone are tiring.

Other symptoms include weakness, overall lack of energy, leg pain, shortness of breath, as well as irritability, and trouble thinking, concentrating and making decisions.

One of the most difficult aspects of fatigue is its invisibility.

After recovering from the obvious effects of surgery and chemotherapy, I looked reasonably healthy, even though I felt as if I was walking through quicksand.

Everyone, including me, thought that I'd soon start doing what I'd always done.

So the Man of the House was surprised to come home and find me snoozing face-down on my desk every afternoon.

Even the most sympathetic friends found it hard to understand why I constantly said, "I'm too tired." I kept wondering where my get-up-and-go had got up and gone.

Friends and family aren't the only ones who don't recognize fatigue. It's so subjective and difficult to measure that doctors and other health-care providers tend to ignore it.

Too many physicians trivialize the problem and its impact on everyday life.

On a visit to one oncologist, I asked what I could do to help deal with the paralyzing exhaustion. She shrugged and told me fatigue is just part of having cancer.

Looking over her shoulder, I could see a poster on the bulletin board behind her for "Energize!" a seminar run in her own cancer centre and designed to help people just like me.

Happily, more physicians and cancer centres are beginning to understand that fatigue can destroy health and quality of life.

The world-class M. D. Anderson Cancer Center in Texas offers patients a unique multi-disciplinary fatigue clinic.

All patients start with a complete assessment of their physical and mental health.

Cancer-related fatigue is still a bit of a mystery, but some of the contributing causes are anemia, radiation, chemotherapy, medication, poor nutrition due to nausea or lack of appetite, pain, depression, anxiety, insomnia and stress.

At M.D. Anderson, the initial assessment is supported by a comprehensive treatment plan and a team of people to help implement it. A core recommendation is almost always exercise.

It sounds odd to consider physical activity when you're too pooped to participate, but one of the most important ways to treat fatigue is with planned exercise.

That annoying slow-walker you passed in the park was probably me.

After a day or two of dragging myself around the block, I started to feel better -- and walk faster.

Most of us never think about conserving energy, but when you don't have a lot, you learn to put important activities at the time of day when you have most energy, and plan for rest.

That's why I walk in the morning and curl up in front of The Young and the Restless in late afternoon.

Ordinary things like bending over, reaching, or standing to prepare food or wash dishes can be tiring, so it helps to arrange a kitchen or office to put everything, including a chair, close at hand.

Many people with cancer continue to work, but they often need rest during the day. Workplaces that provide a quiet room for a nap allow an employee to continue to be productive.

The fatigue from cancer or other chronic illness brings loss and grief.

It's hard to have to give up things we love -- like bike riding on Sunday mornings or bending over to plant veggies. As a stubbornly independent person, I found it difficult to accept help.

When dear friends offered homemade meals for my freezer, I resisted. I didn't want to admit I needed their help. But their generous gift of yummies let me avoid the exhaustion of preparing a meal, and I'm deeply grateful they ignored me.

These days I'm cooking again. The puppies are getting lots more walks, and I've optimistically taken my bike in for a tune-up.

Best of all, when someone asks how I feel, I can honestly answer "much better." Still, with all the emphasis on survivorship, it's easy to forget that invisible and long-term fatigue is the price many of us pay for living with cancer. Remember that the next time you pass a slow-walker in the park.

© Copyright (c) The Ottawa Citizen

Sunday, June 28, 2009

Thank God for Insurance...

The insurance statements have started to arrive and all I can say is thank God we have insurance. The cost of treatment is astronomical. One round of treatment costs over $16,000. I never thought that it would cost that much. I have had 6 treatments thus far to the tune of ~$100K with all of the accouterments. Unbelieveable!

Wednesday, June 10, 2009

Very Good News!

I had a meeting with my doctor today to go over the progress of the treatment so far. To date I have had 5 treatments and in between 4 and 5 I had a CT scan to compare against the baseline which was done prior to the first treatment. The doctor was very pleased with the results so far the 3 measurable tumors on my liver have shrunk in size significantly, some of the smaller nades have disappeared and the original tumor has also gone down in size too. They use a blood test called CEA. Before I started treatment my CEA was 93 today it was 5.3. A normal person's CEA is below 5 a smoker's range is between 5- 10. The CEA levels tell how active the cancer is growing the lower the number means that the cancer is under control and not progressing. What does all this mean? Basically I am responding to treatment better than expected.

I have been feeling good and the chemo side effects have not really been that bad. I am working full time at Treo Solutions as the Lead Quality Assurance Engineer. They have been really cool with my schedule of doctors appointments, treatments, labs, scans etc. I work from home 2 days during my treatment week and the rest of the time I spend in the office.

Olivia turned 2 on May 22 and she is quite a kid. She is very smart and has already learned the alphabet, counting, colors, and shapes. She is also speaking some basic Chinese words that we have been teaching her along with the help of a children's show called Ni Hao Kai Lan. She also counts to 5 in Chinese. We always show her the pictures we took while in China in hopes that she will remember her time there.

In closing I would like to THANK everyone who has kept me in their thoughts and prayers and ask you to continue to do so. We may not always have direct control of the world around us but we are always free to choose how we think and feel. It’s not what happens that makes the biggest difference but how you deal with what happens. No one can take this inner freedom, this inner power, unless we choose to give it away. I am optimistic that I will beat this disease and be around for a long time to come.

peace & PTL--