Many people from many different walks of life will come to the World Series of Poker today to play poker. None of them will have a harder time getting to the Rio today than Scott Kowalske did a few weeks back, and he was staying at the hotel. Kowalske called room 334 of the Rio home for a few days in June. He was here to fulfill a dream. He was here to find hope. He was here to escape the pain of the chronic wasting disease that is eating away at his body, and he did all of this by turning to poker. "It gets my mind off the problem, and the pain, and it just lets me focus on something else. It's been a blessing for me," said Kowalske of the game he has turned to in his darkest hour.
Every morning when Kowalske wakes up he has to take 13 Darvon pills. He then applies the medication of one Actiq swab, the same synthetic opioid that is prescribed to stage four cancer patients, to deal with the pain in his body, and make it through the day. Whether that day involves a game of poker at the WSOP, or normal tasks that others take for granted. "Toothpaste…when I try and brush my teeth, it burns my mouth, that's how bad it is," said Kowalske. To give you an idea how much pain Kowalske is in, Actiq is 80 times more powerful than morphine. Cancer patients will take one dose of Actiq a day, while Kowalske takes four.
His fingers are disintegrating, literally. "In six months, all of this was gone; in six months I've lost seven to eight inches of bone," said Kowalske as he held up a picture from an October, 2006 newspaper article. He then held up his hands to provide a comparison. If a picture is worth a thousand words, a human example of that kind of loss screams those same words at you at an almost unbearable decibel level. His legs are numb from the knee down, which has relegated Kowalske to crutches to get around, and that is not even the worst part. The myelin that covers his nerve endings has been stripped away, which leaves those nerve endings raw, and Scott in a constant state of excruciating pain. "I wake up in tears every morning," said Kowalske.
Kowalske has been at the center of a strange journey since the first symptoms of his disease surfaced in 2001. The next six years sent him to doctor after doctor from his hometown in Traverse City, Michigan to the University of Michigan, two Mayo clinics, the Scripps Research Institute in Los Angeles, California, as well as specialists here in Las Vegas and Scottsdale, Arizona. Just as daunting has been the voyage of his possible diagnoses. Multiple sclerosis, Lou Gehrig's disease, severe myopathy, and severe peripheral neuropathy were among a few of the suspected diseases. A wrist biopsy conducted by Johns Hopkins University doctors at the University of Michigan confirmed that he indeed had a form of rare nerve degeneration attacking his body. But what was the cause?
That was when Kowalske received a call from one of the doctors who had seen him in Los Angeles. "Scott, did you ever eat deer," asked the doctor. Kowalske, who was an avid hunter before the disease took away his ability to walk, answered yes. "We found a prion in your body," replied the doctor. That doctor then told Kowalske that he had a variant of Creutzfeldt-Jakob disease, a chronic wasting affliction. The doctor had discovered rogue prions in Kowalske's body. Prions present a frightening case to doctors and scientists, because prions are proteins, not viruses, bacteria, fungi, or parasites. The chronic wasting disease was one that had thus far affected only elk, mule deer, and white-tailed deer. The disease is a progressive, degenerative disease. No human cases had been confirmed before Scott Kowalske. A tongue biopsy confirmed the suspicions when it came back positive. This outbreak of chronic wasting disease in a human body would be as devastating to the multi-billion dollar hunting industry as the mad cow disease was to the beef industry. The government would not confirm the finding until a brain biopsy confirmed the prions. A brain biopsy can only be performed on a patient who is already dead. A problem that was so black and white to Kowalske had now become an issue with many shades of gray.
Kowalske's extensive medical files were reviewed by many doctors across the country, but many were reluctant to discuss the results due to the political ramifications. At one point, Kowalske's Medicaid insurance pulled the coverage on his Actiq medication because he was not a diagnosed cancer patient. A call to the governor was no help because of the murky political atmosphere of the situation. The timing of this news could not have been worse for Scott. It had taken him a year to raise the $30,000 for his first stem cell treatment in March. He was told by his doctors to avoid all stress and tension so that the stem cells could go to work healing his body. The decision by Medicaid to pull his pain medication made that impossible. He turned to icing his disintegrating fingers to ease the pain, but the lack of pain medication put Scott in and out of the hospital for several weeks. Due to this stress, 80 percent of the stem cells introduced into his body were lost. A state senator eventually got involved to reinstate the prescription temporarily. Kowalske was then able to find health coverage from Blue Cross to solve the problem of pain medication, but his life still hangs in the balance.
This odyssey would have left most people broken, battered, and without hope. But Kowalske retains a positive outlook. He smiled throughout the interview in his hotel room at the Rio, even as he lamented that he spent his entire life savings and sold his house to pay for the hundreds of thousands of dollars he has racked up in medical bills. His parents recently took out a second mortgage on their home to help their son.
Kowalske finds hope in the fact that he might live, and a second legal cord stem cell transplant could save his life. Stem cell treatment adds even more shades of gray to the problem. The cutting-edge form of regenerative medicine receives very limited federal funding in the U.S. and it is still in the early stages of development. Procedures are routinely performed outside this country with exceptional results, but it is costly, and not covered by insurance. In Scott's case, the life-saving treatment will cost $38,000. Scott does not know how much time he has left, but the shrinking of his fingers ticks away like some cruel biological clock. To take his mind off the final effects of his disease, as well as the pain that invades his body every minute of every day, Kowalske routinely turns to poker.
Before the disease attacked Kowalske's body, he was an avid hunter, as mentioned before, and he also golfed and co-owned a roofing company. While his physical skills have been taken away, he finds the mental challenges of poker as an escape, a challenge in which he can still compete. "I can't work anymore, and I can't do 90 percent of the things I could do before, but poker is something I can still do," said Kowalske. He went on to say, "It doesn't make any difference who you are. Anybody can win, and that's what's so great about poker."
Kowalske won $4,000 in a poker tournament recently, so he decided to head to the WSOP to test his skills and see all of his favorite players. "If I'm going to die, I'm going to play in the World Series," said Kowalske. He hoped to make a final table at the WSOP. "If I get fourth place, you'll see the happiest fourth-place finisher in the history of the World Series," said Kowalske. It was not to be though: This isn't a movie; it is real life. "I had a ball while I was out here," said Kowalske. "It's been good, the people have been great, and I haven't had this feeling in a long time."
In reality, Kowalske cashed for $3,767 in the $1,500 no-limit hold'em event he played, and while the few thousand he made in profit helps, he is still far short of his goal. "I just need some help. Time is of the essence; every month matters a lot now," said Kowalske in his last statement of a lengthy interview. As soon as the tape stopped rolling, Kowalske quickly steered the conversation back to his favorite subject. He wanted to know who the chip leader was that night, and what professionals still remained in the event. He no longer wanted to talk about the problem that had taken over every aspect of his life; he wanted to talk about poker. He had crept back into his escape.
Those who wish to help Kowalske can donate to the Scott Kowalske Fund at the Fifth Third Bank in Traverse City, Michigan.
Scott Kowalske Fund
Fifth Third Bank
630 W. 14th Street
Traverse City, MI 49684 231-922-4334
You may also email or call Scott directly.
Email: [email protected]
Home: 231-933-8494
Cell: 231-499-4941
