Tuesday, October 9, 2007

Recent News

Round two has begun. I have come to dread Monday chemo, knowing that each week I go in to receive drugs that are killing pretty much all of the white blood cells in my body. I do praise God that my major side effects have consisted of a continual upset stomach and constant fatigue.

Recently I noticed another effect of the chemo that secretly I hoped would not come to pass- the loss of my hair. It was weird to run my hand through my hair and have clumps of it resting on my palm. It is not a big deal, but it is the first visible sign that sort of says you are sick or something like that. I think that I will shave it preemptively.

We received some good news yesterday as well. The results of my recent CT scan showed no interval change in my cancer since the last CT scan in May. Basically, there was not metastatic spread of disease to the chest or lungs. We pray that this will be the same prognosis in the coming months.

Some recent photos of me with my future hand.....






Tuesday, September 25, 2007

A Story from the Prosthetics Convention

"Article posted courtesy of the Las Vegas Sun newspaper"

A HAND UP
No more hooks or claws - the latest artificial hand has four lifelike fingers and a thumb
By Marshall Allen, Las Vegas Sun
Photography by Sam Morris, Las Vegas Sun

Manish Desai walked into the exhibit hall looking for a new left arm. His had been amputated because of cancer, and visiting the Sands Convention Center on Thursday was like walking into a super store for prosthetics and their accessories.

There was the electronic wrist attachment that, with a flick of a muscle, buzzed and whirled in circles . There were limbs that could be bound to the body with straps and manipulated with wires. And blush-toned cosmetic covers - silicone skin substitutes, some with fake hair attached.
A triple amputee - with two prosthetic legs and an arm - walked past. Several display booths were staffed by people whose missing limbs had spun them into careers in an industry that's growing because of the war s in Iraq and Afghanistan.

Desai and his wife, Emily, are two of my best friends, and his cancer diagnosis in April had sent us all reeling. Doctors said it was a rare, grave and fast-spreading cancer and expressed surprise that he wasn't dead already. His best chance of survival, they said, was to amputate his left hand, where the tumor was taking over.

Desai was left - handed, and as an architect his career depended on precision and fine motor skills. But at 31, with a happy marriage and a toddler son, his future loom ed large. He calls the decision to remove the hand a "no brainer."

In June they cut off the arm about five inches below the elbow.

"The bad news is , you don't want to lose your arm," Desai said. "The good news is , the technology you have allows you to do so many things."

So the Los Angeles couple came to Las Vegas, where they had an appointment at the American Orthotic and Prosthetic Association industry convention to pick up a loaner hand for his prosthetist back home to examine.

Desai had done his research and settled on the i-Limb, a robotic hand made by Scotland-based Touch Bionics that is creating buzz in the industry. Other prosthetic hands appear as hooks or claws, with three prongs that open and close to grasp objects, but the i-Limb looks human, with four fingers and a thumb and five motors operated by a computer processor in the palm.

It's the only hand on the market that has both a movable thumb and the ability to sense pressure to conform around objects, according to Touch Bionics CEO Stuart Mead.

Like other prosthetics, the i-Limb is a myoelectric device, meaning the amputee manipulates the battery powered hand by twitching muscles in his stump. The muscle movements are detected by two small electrode plates and translated by software into particular actions.

Desai had not experienced a myoelectric hand until Thursday. Before the i-Limb appointment, he browsed other models, such as the Utah Arm, made by Utah-based Motion Control.

The company president, Harold Sears, surprised Desai by inviting him to try a table-mounted model, and didn't waste a second in clamping sensors on Desai's stump. Wires connected it to a prosthetic hand on a display a few feet away.

Desai focused his eyes, twitched his forearm this way and that, and soon he could easily open, close and rotate the hand - despite its distance .

"That was pretty cool," Desai said, his eyes bright. "I was able to control that pretty quick!"

Sears and Desai lamented that insurance companies don't like to pay for the latest prosthetic advances. The i-Limb package - the hand, the fittings, accessories, installation and training - can cost upwards of $40,000 . Replacements, fittings and accessories will cost thousands of dollars more a year. The couple plan to raise money privately and battle insurance to cover the costs.

At the Texas Assistive Devices booth Desai talked to Ron Farquharson, who started the company after losing his arm in an industrial accident. The company makes hair brushes, spatulas, wood chisels, fishing poles and other accessories that plug in at the wrist.

"You're not going to be able to do everything you used to do, but it's going to take a lot of the frustration out of it," Farquharson said of his products.

"If I could butter a piece of toast I'd be a happy man," Desai replied.

Or cut a steak, Farquharson suggested. Yeah, that'd be nice, Desai agreed.

At the Touch Bionics booth, the couple met another customer, Jeff Van Hulle, a 47-year-old San Francisco economist who was born without a hand. He was drawn to Las Vegas to try out the i-Limb, and was mesmerized.

He had been testing the device for two hours, tossing a ball back and forth between hands until the battery died.

"It's wonderful," he said. "It's leaps and bounds above other hands. Each different finger is moving."

As Desai quizzed the Touch Bionics CEO about the industry's fanciest hand, Emily stood in the background.

"This is the new hand that everybody is talking about," Emily said. "This has been the thing he looks at and says, 'It's OK.' Not that it's going to cure cancer, but this is what gets him excited about moving forward."

The i-Limb was introduced six weeks ago and only 30 have been sold in the United States. Manish and Emily say they love the idea of being on the cutting edge, advancing prosthetics for future generations of amputees.

Mead says people buying prosthetics need to be certain they're buying a product that suits their needs.

"It's like cars," he said, holding up the i-Limb. "You wouldn't take a Ferrari on the farm, and you wouldn't use this in a steel mill."

Desai is now undergoing chemotherapy treatments, and there is a chance his cancer could return. If it does, it will be more difficult to treat, doctors have said. Desai, a Christian, said since he was diagnosed with cancer he's prayed that God would give him "wholeness and restoration."
"Getting this limb is part of that wholeness and restoration," he said.

Saturday, September 22, 2007

Cycle One

This past monday I began my first regimen of chemotherapy. I was not sure what to expect really, somehow I thought it would be immediately painful or that I would see my hair start to fall out on the spot. None of that was true. The treatment was painless and uneventful for the most part. I left the oncologist's office feeling very worn down and had no idea what the remaining week would hold for me.

This Monday I am going in for the second treatment. This past week was full of fatigue and a really bad case of heartburn which I did not expect out of all the possible awful side effects. It seemed that by Thursday I was feeling much better and had regained a good amount of energy. I have to say that I don't feel 100% even on the best day and most of the time I feel off not quite normal. I guess this is to be expected when you are pumped full of chemical drugs that are are eradicating most of your healthy cells.

After only one week I feel a bit overwhelmed knowing I have to undergo 11 more treatments and 4 1/2 months. I try not to think about this, but the daily shots of Leukine during week one into my stomach remind me how much I do not enjoy this at all. I do not know what the remainder of cycle one has in store for my body, my prayer is that God continues to give me strength and peace to endure.

Sunday, September 9, 2007

Just Starting Out

We are looking forward to starting to post here fairly often, to keep friends and family updated on our latest happenings! We will let you know once we are up and running! Thanks so much...