Memories of Jason Freiboth: Update from Lisa

Monday, November 15, 2010

Update from Lisa

I just got off the phone after talking with Candy, Jason, and Dr. Martin (the oncologist who worked with Jason the last time he was hospitalized). Dr. Martin had reviewed Jason's MRI and CT scans and explained what is going on.

The scans show that Jason's cancer is progressing, especially the tumors around his spinal cord. The tumor that Dr. Tien was able to partially remove a few weeks ago has grown back very rapidly and is again pressing on the spinal cord and causing Jason's pain and difficulty walking. Dr. Martin consulted with both Dr. Tien and Dr. Chang, who have followed Jason's cancer for the past several years, and they are all in agreement that there are no good options for further treatment at this point. Jason cannot take any more radiation, and the fact that the last tumor has grown back so quickly means that is no real role for surgery, either. In terms of further systemic treatment for Jason's melanoma, there aren't any chemotherapies that would be effective. This means that - in the opinion of Jason's doctors - it is really time to focus on managing symptoms (including pain) and quality of life issues so that Jason can enjoy the precious time he has left. He has gotten some steroids that will help reduce the swelling near his spinal cord and is getting IV morphine. Dr. Martin is sure that he will be able to go home with oral morphine, and he will be able to increase the dose beyond what he has been taking in order to control the pain. There are other pain medications that can be considered later, including Fentanyl patches. Jason is eligible for hospice care, so he will get his own assigned in-home nurse who can help manage pain and other symptoms. Given the location of the worst tumors, Dr. Martin thinks that the most likely symptoms to develop could be further lower-body paralysis and perhaps bowel and bladder issues, which are regulated by nerves in the lower spine. He will also feel tired and sleepy more often, both because his body is using its energy to fight the cancer and because of the pain meds he will be on.

I try really hard to keep these messages clear, factual, and accurate based on what the doctors have said. I know that you all know how much emotion there is under this all, and that I'm just trying to separate the feelings from the facts in these little written summaries. Jason has fought this thing so valiantly for so long, and it is just unbearable to hear that we are at the point we're at right now.

Love to all,
Lisa Aumack

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Background on Jason's Battle with Cancer

Skin cancer has taken a toll on longtime Bend park district sports program do-it-all Jason Freiboth, but with support from myriad sources he hopes to beat the potentially deadly disease. If you or your children have played organized recreational sports in these parts over the past dozen years, there’s a good chance you’ve come across Jason Freiboth (it's pronounced FRY-both). An employee of the Bend Metro Park and Recreation District since 1996, Freiboth (now 37) has had a hand in just about every sports program the district offers.

It began in early 2002 as a tiny white spot on his lower lip. “Like a flake of dry, chapped skin,” Freiboth describes it. “It would come and go, but it wouldn’t go away.” So he had it checked, and the result was not good: He tested positive for skin cancer — specifically, squamous cell carcinoma, or SCC. A procedure to remove the cancerous tissue was successful, and Freiboth counted his blessings and went on with his life. “They (doctors) told me it looked like they got everything and that the margins were clear (no sign that the cancer had spread),” he says. “I was good to go.”

That he was … for the next five years. Cancer is random. It is as unpredictable as it is indiscriminate. And while anyone who has developed skin cancer is at increased risk of encountering the disease again, Freiboth did not suspect cancer when, in spring 2006, he noticed swelling on the right side of his neck. It turned out to be cancer — the SCC was manifest in Freiboth’s lymphatic system. The unwelcome development meant another round of surgery, this time to remove the cancerous lymph node and a number of the surrounding nodes. That operation, too, was declared a success. After Freiboth made a quick and encouraging recovery from the neck operation. “It looked like I was cancer-free,” he recalls, “and in the clear.”

He had heard that before, of course, only to be disappointed. But that made him no better prepared when a checkup last fall revealed another little spot on his lip. Or when another biopsy determined that the “spot” represented a different form of skin cancer: melanoma. While not as common as squamous cell carcinoma, melanoma is even more dangerous, causing more deaths (an estimated 8,000 in the U.S. in 2007) than any other type of skin cancer. Like SCC, melanoma can spread to other parts of the body if not treated early, so Freiboth went back under the surgeon’s knife. First, he underwent a “lip shave.” “They peeled all the skin off my bottom lip and pulled the skin from the inside of my mouth to make a new lip,” Freiboth explains. A few weeks later, after it was discovered that the lip shave had not removed all of the cancer, Freiboth underwent another procedure, during which a half-inch wedge of his lip was removed to assure that the diseased tissue was gone. And, he says, it appeared once again that he was good to go.

But as a precaution, his doctor wanted to set him up for radiation treatment. Freiboth was also prescribed a positron emission tomography exam, or PET scan, which allowed his radiation oncologist to perform a full-body examination for cancer. The scan was performed in early March — and Freiboth’s oncologist got back to him with some troubling news. “She said, ‘We found a suspicious spot we need to look at,’” he recounts. “I asked her where. And she said, ‘On your brain.’ Further testing determined that the spot the oncologist had detected was a tumor. “About the size of a walnut,” says Freiboth, “on the back of my brain.” On March 19, he underwent surgery to remove the tumor — most of it, anyway. And on June 9, he completed a series of hard-hitting, “whole brain” radiation sessions in an attempt to shrink what remained of the tumor. Dr. Linyee Chang, a radiation oncologist with the Cancer Treatment Center at St. Charles Bend, says Freiboth’s prognosis depends on how he responds to treatment. “His youth and his excellent health status are in his favor,” she observes. “He can tolerate aggressive treatment. “And,” Chang says, “he has a very positive attitude, and a strong support system.”

Freiboth is thankful to be reasonably well insured. But insurance doesn’t help with travel expenses, and since his cancer returned in 2006 Freiboth has made numerous trips to Portland to see doctors and specialists. He also worries that his ordeal could result in substantial time away from work and a possible long-term loss of income. On top of that, his is not the family’s only serious health issue: Seven-year-old son Max was born with hemiplegic cerebral palsy, which requires considerable therapy and treatment. That means even more trips to Portland, for visits to a neurologist and, every few months, to the Shriners Hospital for Children. As for the physical toll the cancer is taking, Freiboth has his good days and his bad days. Work serves as a refuge of sorts for Freiboth, allowing him to turn his attention away from his frustrating and frightening fight against a dreaded, life-threatening disease.

The latest radiation sessions have provided hope. And he remains hopeful as he braces for upcoming stereotactic radiation, which he describes as “a one-shot treatment” to attack whatever remains of his tumor. But he has been let down often enough to be guarded with his optimism. Same for his wife. “I’ll believe it (the cancer) is gone,” says Candy Freiboth, “when I see the MRI (magnetic resonance imaging) that says it’s clear.” Jason has “metastatic” melanoma, which means the disease has entered his bloodstream. That, Dr. Chang explains, is how the melanoma spread to Freiboth’s brain. Only time will tell if the radiation treatment will stem the spread. “Melanoma’s a strange thing,” Freiboth says. He knows that if it continues to advance, his outlook is grim. “I could have six months to live,” he says matter-of-factly. “I don’t think they really know.” Since he was first diagnosed with skin cancer, Freiboth has experienced a range of emotions: anger, sadness, fear. And, of course, he wondered, “Why me?” Through it all, though, he has been buoyed not only by his family but by an extended family of co-workers and friends. “We’re hoping that it’s a short-term deal for Jason and that he can fight through this,” says Eric Carmichael, one of the basketball players at the Athletic Club of Bend, where Jason has ref'd for years. “We’re in his corner … we’re praying for him. “The world’s a better place with guys like him in it.”

Memories of Jason Freiboth

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Monday, November 15, 2010

Update from Lisa

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Slideshow of Jason & Family

Slideshow of Pasta Feed

Background on Jason's Battle with Cancer