Friday, March 16, 2012

'Don't Cry for Me, Myeloma!'

The challenge to resist victim-hood is faced by all of us with cancer. Falling prey to such emotion leads to self pity and dissolves the spirit needed to effectively fight this disease.

Cancer arrives with a crew, of hopes, fears and powerfully independent emotions. A fellow patient, a new friend, recently told me the story of his original diagnosis and its impact on his personality. His self portrait seems unlike the man I know today, but he assures me it's accurate, an image he checks himself against each day:

He was jealous of the attention bestowed on another patient. The other guy, also fighting cancer, seemed to be there each time he visited the Dana Farber for treatment. He was young as well, but needed a wheelchair at times, the result of the disease and the trauma of a heavy chemo load.

My friend, John, had it in his head that the nurses and doctors had less concern for him than for the young guy in the wheelchair, whom we'll call Patrick. One day sitting in the Dana Farber waiting area, John was particularly miserable.

His wife, grown weary of his attitude, confronted him. "Are you in such pain, has something happened to cause you to be so depressed?"

He became silent refusing to answer. She told him she had been watching his reaction to Patrick and demanded to know why the 'poor guy' was getting under his skin?

'The poor guy!' he snapped. 'Why is he such a poor guy? I have cancer and nobody is fawning over me."

She was shocked. For the first time the depths of his self pity were clear and she realized the darkness he was forming around his soul.

'John,' she said quietly, gathering her things, 'the difference between you two is that Patrick is squeezing every last drop out of life in the time he has left while you're looking for people to feel sorry for you.'

She stood up reached into her purse and flipped the car keys which he caught mid air, an inch from the end of his nose.

'You take the car,' she said. 'I'll grab a taxi and go to work before I lose my job because I'm spending time babysitting you.'

He was stunned and embarrassed and allowed the jangling keys to fall to his lap. He tried to ignore those sitting around him in the waiting room as they shuffled newspapers or looked at the floor. Finally, he pushed himself from the seat and walked out through the automatic door to the parking circle and breathed some real, unfiltered air.

It was a busy clinic day with a bustle of hurried nurses and doctors, people dressed in suits who had an, 'I'm in charge' look on their faces, and patients whose sallow skin and degree of hair loss described the intensity of the treatment they endured. Some were happily engaged in animated conversations with friends or loved ones. Others shuffled along, insolently self absorbed and familiarly alone.

 The sun was hot. His first thought was to find some shade before perspiration wilted the creases of his crisp white shirt, which he would find most annoying. He looked about for some form of protection just as a light, cooling breeze wafted gently against his face to produce a pleasant sensation on his skin. He stopped looking for shade.

He sat on the back of a wrought iron bench and after a moment, closed his eyes and turned his face skyward.  Something caused him to simply let go and he felt the universe open. He had a brief  sensation of being drawn toward the vastness of space, out of the smothering isolation of his life. He saw the insignificance of himself, but also his importance as part of the constituency of the living, integrated into the fiber of  every other.

And just as suddenly he was back. He still had cancer, the pain, the fear;  but the sun was bright, the breeze was cool and his shirt looked good.

"I'll stay out here for a bit longer," he thought.

Saturday, March 10, 2012

Zometa Curtailed

Lifting weights might sound boring and feel too much like work in the early stages. However, with a disciplined schedule, using appropriate exercises and techniques, the duration of a workout can be shortened. The results in strength and improved muscle tone are rewarding but the positive effect on bone density is a critical benefit for those living with multiple myeloma.

I began a month ago with the advice of oncology professionals at the Dana Farber Cancer Institute in Boston, who have treated my multiple myeloma for nearly ten years. In a recent post I mentioned that Dr. Robert Schlossman had reduced the frequency of a Zometa infusion from once every 30 days to a 60 day interval. Reducing exposure allows me to continue to benefit from Zometa while lessening  the probability of complications. Certain exercise complements the bone strengthening effect of Zometa.

 Nurse Katie Murphy advised me that walking, fast and with more arm involvement, produces impact, and thus promotes bone density in the legs, hips and back. For the upper skeletal region, the arms, shoulders, chest and ribs, she recommended a routine using light, handheld weights.  I work toward completing five sets of my routine. Each set consists of five discrete exercises and I try to perform six repetitions of each individual exercise in the set. So my routine, with a 15 lb. dumb bell  in each hand, follows:

1) Shoulder or 'military' press: (the entire five exercise set is done standing), six reps (repetitions) and return weights to the rest position at your sides.

2) Side Flies: From the rest position, six reps, extending arms, elbows locked to the sides and up until parallel with the ground.

3) Forward Flies: With one foot slightly ahead of the other, from the resting position, six reps, extend the weights forward and up with elbows locked, until hands are at about eye level. Return to rest position.

4) Upright rowing: Six reps, lifting along the line of the upper torso until the weights come together beneath the chin.

5) Shoulder roll: Six reps with the elbows bent and weights held to center chest. While keeping elbows tight to the ribs, roll the weights out and away to the side as far as is comfortable, then return weights to the  center of the chest, forearms parallel to the ground throughout.

The key is to move from one exercise directly to the next. After completing the first set, take a couple of breaths and begin again almost immediately. When you are able to do five complete sets, 150 total reps without stopping, move up in weight.

Out of concern for my technique a friend recommended a long running PBS exercise program called "Body Electric", which I found on line. Its Founder, Margaret Richard, leads viewers through a series of exercises using light weights and strict adherence to proper form. This avoids injury and optimizes the effect of the workout. I procured the latest dvd, and although Ms. Richard claims to be my age, (she appears to be much younger), I have to admit, I was unable to match her endurance and strength as I began the program.

Though I'm not able to work out as hard as I used to, I feel better doing what I can. As important, I feel a sense of satisfaction, flying in the face of this beast we call multiple myeloma.

Thursday, March 1, 2012

Uncertain, We Are...

The 'Roobeedoo Blog' of two or three days ago, included the photo of a Lady and a hand-knit wool wrap recently completed.  In the picture, she is enfolded securely against the cold surrounded by vast, hibernating farmlands.

The vista would be desolate were it not for the expectation of the bright colors of new life, sure to burst through the earth with the near-by arrival of spring. If I could stand in her spot I would release my churning mind to the far reaches of the visible heavens to be diluted in the atmosphere of an unending sky.

Through the window by my desk I look down on city traffic and people rushing to catch passing trolley cars. However, when the wind is right, I taste salt in the air and imagine the bone chilling cold of the Atlantic Ocean two miles to the East. I envision the stretch of sand where I stand from time to time at the gate of life's essence, wanting to know the significance of this single, minute, particle of a soul.

Patients and care givers alike, endure an intense uncertainty. The latter bear an added layer, more profound, traumatic and unnerving, I think, for the looming prospect of moving forward alone.

"No matter where my life takes me in the future this will be my farm shawl," said the Lady, acknowledging commitments made and kept, and the constancy of her own construction.

The warmth of the wool honors its place in the moment and carries forward the luminous dust of indelible dreams.