2010, the year I almost died, got divorced and got to eat as much of anything I wanted with a license to smoke dope!
The year started out much like any other year. We had a long winter with snow on the ground for the whole season. In February, I got a nasty fever (as high as 103) with “flu like symptoms.” I figured it was one of those 24-hour viruses that kick your ass and move on. But then it happened again. Then again and again. Finally I saw our family doctor about it. After having some blood work done she referred me to an Oncologist. After taking blood, bone marrow and other bodily fluids I was diagnosed in March as having Large Granular Lymphocyte Leukemia. Leukemia is one of those buzz words that freaks people out. For some reason I wasn’t scared. I knew I’d get through it once I knew how to deal with it. Besides, I knew what I had was rare and while life disrupting, it wasn’t life threatening.
What is LGL Leukemia? First of all “Leukemia” covers a wide spectrum of blood diseases. What happens with the form that I have is that the white blood cells form a sand-like crust around them and quit working. They don’t fight off infections, they take up space healthy cells could use and they don’t die off. I think of them as a bunch of old soldiers who sit around at the VFW, drink whiskey, smoke cigars and congratulate each other for defeating the Hun without acknowledging the young soldiers who are out fighting today. They put me on a chemo drug, Methotrexate, which I take once a week in pill form. No blood or bone marrow transplants, no IV chemo drugs. I got off easy.
In April I went with Laura and a couple of friends to Jackson Hole, WY for some wildlife viewing with our friends, Ralph, Louise and their daughter Susie who were hosting us. The first night there I noticed my ankle had swollen up and the next day we decided to have it looked at. After trying to decide if we should go to a clinic, we chose to go to the hospital. They looked at it, took my vitals and put me in ICU. My blood pressure had dropped and my temperature spiked. They put me on IV wide spectrum antibiotics and I was there for several days getting poked, prodded, X,Y&Z-Rayed, Cat Scanned (a nice English Tabby), you name it. They decided that I had a secondary infection in my ankle and pneumonia. They were afraid that I’d get blood clots so they had a continuous massage machine on my legs. Every so often they’d let me out of bed to sit with my leg raised. A couple of ski-babes came by to give me physical therapy teaching me how to use crutches. They didn’t want me to put weight on the swollen ankle, so when I was released, it was with crutches.
Only I wasn’t released to go home, I was released to check into our local hospital. Since our friends who brought us up to Jackson had already gone home, our hosts offered to drive us back to Fort Collins and take me to Poudre Valley Hospital. Since their grandchildren are in Fort Collins as well, it was a perfect opportunity for them to spoil them a little more. I spent a few more days in the hospital where I could be taken care of by my own doctor. When I was released I had in-home care for ten days where a nurse would come by twice a day to give me IV antibiotics. Did I mention I had a tube inserted that ran from my mid arm to near my heart? Makes it easy to hook up IV bottles or give injections. After ten days that was removed and I was back at home and on my own. That’s when things got interesting.
The antibiotics totally screwed up my digestive tract. Whenever I’d eat, it felt like there were two fists in my stomach punching each other. It got to a point where the only things I could eat was rice, my friend Kay’s chicken soup, mashed potatoes, honey-vanilla yogurt and interestingly enough, Indian food from our local Indian restaurant, Taj Mahal in small quantities (I think the rice pudding for desert made the difference). During the next several months I was extremely weak, dehydrated and malnourished. I was given different nausea drugs that helped to varying degrees, but all of them had a common side effect, they put me to sleep. During this time I remembered that a friend had given me a “green” brownie that had been wrapped in the freezer. I ate a chunk of it and it helped more then any of the prescription drugs. And while it altered my consciousness a bit, I could dose myself to get the most relief and the least of the high. In August I applied for my MMJ license, and though I haven’t really needed it in the past few months, it’s there if I things change. (I know some of you who knew me in High School might find it hard to believe, but I make Mormon Missionaries look like party animals as far as intoxicants and caffeine go.)
Well, with the stomach problems and other side effects, I lost weight. I got down to 134 lbs. I looked like a skeleton with flesh or a just liberated P.O.W. My friends and family were worried. With a compromised immune system, if I got sick, it could get real serious fast. I was going in several times a week for IV’s to rehydrate me. Slowly I turned the corner. I started to eat more different things and the stomach war wasn’t so intense. If I had problems after I ate, ginger ale or ginger cookies would take care of it. On Saturdays, I’d go to the Farmer’s Market to get some exercise, socialize and to try to eat different things (Noosa Yogurt became one of my best friends!).
In September, I was put on steroids for eight weeks. That’s when things began to change. I was scouted by both the Rockies and the Giants and was hitting over.400 easy. (Not really…) What happened was I began to have energy again. At one point I’d been so weak that I couldn’t even lift my bass let alone play it. I kept a guitar in the living room and was playing it when I could, but the pressure of it against my ribs, hurt. But after the steroids some good things happened. The stomach problems went away! I could eat. Before long I was eating like a teenager, just non-stop munchies. I drank Boost nutritional supplement beverage twice a day for the calories and I could tolerate a bunch of foods I couldn’t stand the taste of before. I could eat bananas again, salsa, tortillas, tomatoes… It was a lot better then plain rice and saltines that’s for sure. More importantly, both my red and white cell counts went up!
Since then, things have gotten much better. I’m still taking the chemo drugs every Sunday morning with few side effects. After going off steroids the swelling in my ankles went away, the doctor has been putting more time between appointments, first six weeks then three months. I’ve played some gigs with the world fusion band, Tuatha, and I’m working on another project called “The Green Band.” Oh, and I weigh in excess of 170 lbs. But best of all I feel good!
In other news, our divorce became final the other day. “But wait a second, Pablo,” you say. “You and Laura never got married.” There’s an Irish fiddle tune called “You Married My Daughter, But You Didn’t.” The law in Colorado is something like that. Since we bought a house together, we’re considered “Common Law.” Nothing like the Government making choices for you, is it? But that’s another rant for another time. So in order for me to be eligible for certain benefits and programs to help us with medical expenses, we had to get divorced. Nothing has really changed. We’re still together as always. Friends have suggested that we have a divorce party to celebrate our new life together. Might just happen…
While 2010 was a year I’ll long remember, though there’s much I’d like to forget, I survived with a little help from my friends and extended family. Laura was with me every step of the way. Sometimes screaming and pulling her hair our, or afraid she’d come out to the living room in the morning and find me dead, but she’s been there. I can’t begin to express my gratitude for that. So many friends have put up with my illness and madness and called, sent cards, visited me in the hospital or at home. Thank you one and all! I am a lucky man. As Laura and I said in the middle of this, “We have the best friends in the world.”
So, I’d like to wish for you and yours many blessings and love for the New Year (and beyond!). Words fail me, but the feelings are strong. Remember, what doesn’t kill you makes you stronger, or puts you on the talk show circuit.
One Love, Blessed Be!
-Paul
The year started out much like any other year. We had a long winter with snow on the ground for the whole season. In February, I got a nasty fever (as high as 103) with “flu like symptoms.” I figured it was one of those 24-hour viruses that kick your ass and move on. But then it happened again. Then again and again. Finally I saw our family doctor about it. After having some blood work done she referred me to an Oncologist. After taking blood, bone marrow and other bodily fluids I was diagnosed in March as having Large Granular Lymphocyte Leukemia. Leukemia is one of those buzz words that freaks people out. For some reason I wasn’t scared. I knew I’d get through it once I knew how to deal with it. Besides, I knew what I had was rare and while life disrupting, it wasn’t life threatening.
What is LGL Leukemia? First of all “Leukemia” covers a wide spectrum of blood diseases. What happens with the form that I have is that the white blood cells form a sand-like crust around them and quit working. They don’t fight off infections, they take up space healthy cells could use and they don’t die off. I think of them as a bunch of old soldiers who sit around at the VFW, drink whiskey, smoke cigars and congratulate each other for defeating the Hun without acknowledging the young soldiers who are out fighting today. They put me on a chemo drug, Methotrexate, which I take once a week in pill form. No blood or bone marrow transplants, no IV chemo drugs. I got off easy.
In April I went with Laura and a couple of friends to Jackson Hole, WY for some wildlife viewing with our friends, Ralph, Louise and their daughter Susie who were hosting us. The first night there I noticed my ankle had swollen up and the next day we decided to have it looked at. After trying to decide if we should go to a clinic, we chose to go to the hospital. They looked at it, took my vitals and put me in ICU. My blood pressure had dropped and my temperature spiked. They put me on IV wide spectrum antibiotics and I was there for several days getting poked, prodded, X,Y&Z-Rayed, Cat Scanned (a nice English Tabby), you name it. They decided that I had a secondary infection in my ankle and pneumonia. They were afraid that I’d get blood clots so they had a continuous massage machine on my legs. Every so often they’d let me out of bed to sit with my leg raised. A couple of ski-babes came by to give me physical therapy teaching me how to use crutches. They didn’t want me to put weight on the swollen ankle, so when I was released, it was with crutches.
Only I wasn’t released to go home, I was released to check into our local hospital. Since our friends who brought us up to Jackson had already gone home, our hosts offered to drive us back to Fort Collins and take me to Poudre Valley Hospital. Since their grandchildren are in Fort Collins as well, it was a perfect opportunity for them to spoil them a little more. I spent a few more days in the hospital where I could be taken care of by my own doctor. When I was released I had in-home care for ten days where a nurse would come by twice a day to give me IV antibiotics. Did I mention I had a tube inserted that ran from my mid arm to near my heart? Makes it easy to hook up IV bottles or give injections. After ten days that was removed and I was back at home and on my own. That’s when things got interesting.
The antibiotics totally screwed up my digestive tract. Whenever I’d eat, it felt like there were two fists in my stomach punching each other. It got to a point where the only things I could eat was rice, my friend Kay’s chicken soup, mashed potatoes, honey-vanilla yogurt and interestingly enough, Indian food from our local Indian restaurant, Taj Mahal in small quantities (I think the rice pudding for desert made the difference). During the next several months I was extremely weak, dehydrated and malnourished. I was given different nausea drugs that helped to varying degrees, but all of them had a common side effect, they put me to sleep. During this time I remembered that a friend had given me a “green” brownie that had been wrapped in the freezer. I ate a chunk of it and it helped more then any of the prescription drugs. And while it altered my consciousness a bit, I could dose myself to get the most relief and the least of the high. In August I applied for my MMJ license, and though I haven’t really needed it in the past few months, it’s there if I things change. (I know some of you who knew me in High School might find it hard to believe, but I make Mormon Missionaries look like party animals as far as intoxicants and caffeine go.)
Well, with the stomach problems and other side effects, I lost weight. I got down to 134 lbs. I looked like a skeleton with flesh or a just liberated P.O.W. My friends and family were worried. With a compromised immune system, if I got sick, it could get real serious fast. I was going in several times a week for IV’s to rehydrate me. Slowly I turned the corner. I started to eat more different things and the stomach war wasn’t so intense. If I had problems after I ate, ginger ale or ginger cookies would take care of it. On Saturdays, I’d go to the Farmer’s Market to get some exercise, socialize and to try to eat different things (Noosa Yogurt became one of my best friends!).
In September, I was put on steroids for eight weeks. That’s when things began to change. I was scouted by both the Rockies and the Giants and was hitting over.400 easy. (Not really…) What happened was I began to have energy again. At one point I’d been so weak that I couldn’t even lift my bass let alone play it. I kept a guitar in the living room and was playing it when I could, but the pressure of it against my ribs, hurt. But after the steroids some good things happened. The stomach problems went away! I could eat. Before long I was eating like a teenager, just non-stop munchies. I drank Boost nutritional supplement beverage twice a day for the calories and I could tolerate a bunch of foods I couldn’t stand the taste of before. I could eat bananas again, salsa, tortillas, tomatoes… It was a lot better then plain rice and saltines that’s for sure. More importantly, both my red and white cell counts went up!
Since then, things have gotten much better. I’m still taking the chemo drugs every Sunday morning with few side effects. After going off steroids the swelling in my ankles went away, the doctor has been putting more time between appointments, first six weeks then three months. I’ve played some gigs with the world fusion band, Tuatha, and I’m working on another project called “The Green Band.” Oh, and I weigh in excess of 170 lbs. But best of all I feel good!
In other news, our divorce became final the other day. “But wait a second, Pablo,” you say. “You and Laura never got married.” There’s an Irish fiddle tune called “You Married My Daughter, But You Didn’t.” The law in Colorado is something like that. Since we bought a house together, we’re considered “Common Law.” Nothing like the Government making choices for you, is it? But that’s another rant for another time. So in order for me to be eligible for certain benefits and programs to help us with medical expenses, we had to get divorced. Nothing has really changed. We’re still together as always. Friends have suggested that we have a divorce party to celebrate our new life together. Might just happen…
While 2010 was a year I’ll long remember, though there’s much I’d like to forget, I survived with a little help from my friends and extended family. Laura was with me every step of the way. Sometimes screaming and pulling her hair our, or afraid she’d come out to the living room in the morning and find me dead, but she’s been there. I can’t begin to express my gratitude for that. So many friends have put up with my illness and madness and called, sent cards, visited me in the hospital or at home. Thank you one and all! I am a lucky man. As Laura and I said in the middle of this, “We have the best friends in the world.”
So, I’d like to wish for you and yours many blessings and love for the New Year (and beyond!). Words fail me, but the feelings are strong. Remember, what doesn’t kill you makes you stronger, or puts you on the talk show circuit.
One Love, Blessed Be!
-Paul
