I'm in the clinic today for two units of blood, which should help with my racing pulse and breathlessness. My walk from waiting room to vital signs chair sent pulse north of 150, but it quickly settled at 98. Twenty five minutes in transfusion chair saw it fall to 74. Last Friday my ANC count was 200, which meant I had a very low immune system and had to avoid everyone. Yesterday's lab showed 2,700, so I am safe again and trying to catch up with my running buddies to hear about Fred's last race and Drew's training for another 100-miler, which is about six weeks out. Drew's 67.
There are only two known cases of Follicular non-Hodgkin's lymphoma transforming into acute ALL leukemia. Both died. It turns out Sherry, my PhD wife, actually looked up both research reports. One guy got something like 8 rounds of chemo. Apparently, he couldn't shake the leukemia and died. A woman was plagued with complications and died. Neither ever made it to bone marrow transplant. In contrast, when I was admitted I was very ill. The leukemia registered 93% of bone marrow and I was within 24 hours of dying. However, I was also very fit and muscled up. I had just ridden my bike from CA to SC the previous fall and was working out twice a day for a total of about 15 hours per week. When they gave me chemo I handled it great. More important...it worked. My leukemia went I to complete remission. I am scheduled for transplant Aug 13th and they say I have a perfect, 25-year old donor. I love to compete. They say my odds of a successful transplant are 50-50, but I plan to be the first guy who lives.
Interesting question: did my 'excessive exercise' lead to the leukemia transformation? Well, it doesn't look like it was associate with the two other known cases. It's odd. I was star lymphoma patient. Everything looked good for 2 1/2 years. I saw my oncologist before and after my 3,263 mile bike ride, 40-days last Sep-Oct. I actually experienced a 'spontaneous regression'. My largest tumor, about the size of a walnut in the shell melted away, without treatment. This occurs only about 5% of the time and is considered a good indicator of long term survival. Then, boom, I get leukemia. Who knows?
Tuesday, July 29, 2014
Monday, July 28, 2014
Monday, July 28
Transplant admission date is set for Wed, August 13th. My doctor is still considering two different chemo treatments, so there is chance my admission would be delayed two days till the 15th. I think I receive a week of heavy chemo and then the transplant. Then they watch for problems or success.
I hear they selected a 25-year old male donor and that the doc will take bone marrow cells directly from his hip, rather then remove stem cells from his blood.
I had a very busy day Saturday. Despite having low immune system and honoring the necessity to stay away from crowds, I sneaked out to Lowe's for a bag of top soil and two 40-pound bags of pea gravel. I noticed a sink hole on top of our stone retaining wall from neighbor's run off. So I hauled a bag of pea gravel to back yard and dumped it into the 10" hole. I was really huffing and puffing. Then in retrieved the the second bag, but had to sit at patio furniture for 2 minutes. I got the bag to retaining wall, but needed another 3 minute rest before I could fill up the hole. This is how I used to feel after a hard hour on the Stair Master machine. My pulse and breathing get real evated, but come down pretty quickly. Later that afternoon I managed 65 minutes on the bike, with two 10 minute breaks.
I hear they selected a 25-year old male donor and that the doc will take bone marrow cells directly from his hip, rather then remove stem cells from his blood.
I had a very busy day Saturday. Despite having low immune system and honoring the necessity to stay away from crowds, I sneaked out to Lowe's for a bag of top soil and two 40-pound bags of pea gravel. I noticed a sink hole on top of our stone retaining wall from neighbor's run off. So I hauled a bag of pea gravel to back yard and dumped it into the 10" hole. I was really huffing and puffing. Then in retrieved the the second bag, but had to sit at patio furniture for 2 minutes. I got the bag to retaining wall, but needed another 3 minute rest before I could fill up the hole. This is how I used to feel after a hard hour on the Stair Master machine. My pulse and breathing get real evated, but come down pretty quickly. Later that afternoon I managed 65 minutes on the bike, with two 10 minute breaks.
Friday, July 25, 2014
Friday, July 25th
I visited the clinic this morning for lab work and a bag of chemo. Turns out I was neutropenic. Afterround one of chemo they wouldn't release me till my ANC hit 500, which measures the strength of my immune system. Today it fell sharply to 200, so there will be no going out to eat tonight. This probably explains why I get so winded when I get up. After just walking 25 feet from waiting room to chair for vital signs, my pulse raced to 143. The nurse took my wrist to double check and we watched the pulse steadily settle at 100 bpm. I have a busy week next week with tests (all day on Friday). Still no word on exact transplant date- either first or second week of August.
I find myself in a really odd situation. In about three weeks I will get a heavy dose of chemo that will kill all my bone marrow. Then, I receive the transplant; a bag of donor stem cells from an IV. This proverbial fork in the road means a lot. Either it doesn't work and I live maybe a year and a half. During this time I keep getting chemo until it doesn't work any more. I get sick and die. Or, the transplant works and I no longer need chemo. My health and fitness recovers and I beat cancer, which looked like a real long shot two months ago; I have a new lease on life. Interesting. I certainly don't spend any time worrying about a bad outcome. Faith helps. However, neither am I able to think about what it would be like to work out hard again. If it works, what will I, or should I do with the rest of my life. Obviously I'm aware I have accomplished a lot: three 100-mile runs and a cross country bike ride warm my heart. On the other hand I'm aware that my older brother, Don, spends all his time repairing houses for old low-income seniors. My buddy Greg, is very active with a Christian outreach to inner city youths. My claim that I road 15,000 miles last year rings a bit hollow. Hopefully you're also thinking about your life decisions. There is no right or wrong answer, but we only go around once.
I also need to be careful citing the 50-50% odds of success. I can get too detached and sound like it's nothing more than a coin toss. I'm faith based, but would never demand a cure from God. Salvation and relationship are much more important. That said exercising one's faith isn't meant to be a passive suggestion. One must be willing to accept any outcome, but one must commit. God is a good God.
I find myself in a really odd situation. In about three weeks I will get a heavy dose of chemo that will kill all my bone marrow. Then, I receive the transplant; a bag of donor stem cells from an IV. This proverbial fork in the road means a lot. Either it doesn't work and I live maybe a year and a half. During this time I keep getting chemo until it doesn't work any more. I get sick and die. Or, the transplant works and I no longer need chemo. My health and fitness recovers and I beat cancer, which looked like a real long shot two months ago; I have a new lease on life. Interesting. I certainly don't spend any time worrying about a bad outcome. Faith helps. However, neither am I able to think about what it would be like to work out hard again. If it works, what will I, or should I do with the rest of my life. Obviously I'm aware I have accomplished a lot: three 100-mile runs and a cross country bike ride warm my heart. On the other hand I'm aware that my older brother, Don, spends all his time repairing houses for old low-income seniors. My buddy Greg, is very active with a Christian outreach to inner city youths. My claim that I road 15,000 miles last year rings a bit hollow. Hopefully you're also thinking about your life decisions. There is no right or wrong answer, but we only go around once.
I also need to be careful citing the 50-50% odds of success. I can get too detached and sound like it's nothing more than a coin toss. I'm faith based, but would never demand a cure from God. Salvation and relationship are much more important. That said exercising one's faith isn't meant to be a passive suggestion. One must be willing to accept any outcome, but one must commit. God is a good God.
Tuesday, July 22, 2014
Tuesday- at home
I did four days of chemo last week and was released from the hospital on Friday. I threw up on the way home, but felt better after that. The last two days in hospital and first day home I had no appetite and ate very little, but I'm now eatting regular again. There's really nothing new on the medical front. My numbers all look good. I go to the clinic Friday for a bag of out-patient chemo and have several heart and lung tests next week. The transplant should occur during the second or third week of August. I think doctor is negotiating dates with donor.
On the way home from the clinic yesterday I knew I needed to eat something, but nothing sounded good. Then I thought of Pappadeaux's. $24 for lunch was pretty extravagent, but the cup of soup and shrimp poboy was great. When one's recovering from chemo, sometimes you got to be nice to yourself.
I'm beginning to gain a an appreciation for Sherry's MS. She laughs that she would have so much more time in the day if she didn't drop so many things. My dexterity is pretty shaky and I keep knocking over and juggling things. I reached for something in the frig and knocked over a blender full of Sherry's coconut and fruit smoothies. No problem- the lid was on. However, I then banged into a quart of milk, a jug of water. Everything was wobbling when I knocked over the ice tea glass, which also had a lid. When I lunged to save the tea, I completely turned over the blender and smoothie drink poured down four shelves and onto everything. What a mess. It made me angry, but I bet it would have looked pretty funny.
On the way home from the clinic yesterday I knew I needed to eat something, but nothing sounded good. Then I thought of Pappadeaux's. $24 for lunch was pretty extravagent, but the cup of soup and shrimp poboy was great. When one's recovering from chemo, sometimes you got to be nice to yourself.
I'm beginning to gain a an appreciation for Sherry's MS. She laughs that she would have so much more time in the day if she didn't drop so many things. My dexterity is pretty shaky and I keep knocking over and juggling things. I reached for something in the frig and knocked over a blender full of Sherry's coconut and fruit smoothies. No problem- the lid was on. However, I then banged into a quart of milk, a jug of water. Everything was wobbling when I knocked over the ice tea glass, which also had a lid. When I lunged to save the tea, I completely turned over the blender and smoothie drink poured down four shelves and onto everything. What a mess. It made me angry, but I bet it would have looked pretty funny.
Thursday, July 17, 2014
Thursday, July 17
I feel much better after a good night's sleep. My admission weight was 179; I logged in at 187 at 5:00 a.m. The increase due totally to getting so much fluids to wash the chemo from my kidneys. I've got another three-hour chemo bag running now, which will be followed by a unit of blood and more chemo. In my quest for long-term survival (longer than 1-1.5 years), I've successfully jumped two important hurdles. First, the chemo worked. I am full remission, with no sigh of leukemia. Second, they found hundreds of good donors and focused on two perfect looking matches. They are looking at final blood work and negotiating dates for the donor to come to St Paul in Dallas, probably Aug 5-15. Then, we do the bone marrow (stem cell) transplant and I face a final hurdle of getting the transplant to work. This can be very problematic. I may begin to know there is a problem one to two weeks after the transplant. But, at least there us still a path to a cure, so I remain optimistic.
I've mentioned several times that I'm a faith-based Christian. I'd like to explain what that means. I did an interesting Bible study 2 1/2 years ago after I was diagnosed with Follicular non-Hodgkin's Lymphoma, which was defined as a slow growing, but in curable cancer:
Our lives didn't turn out like we planned. Sherry was diagnosed with primary-progressive MS 15 years ago and has been in a power wheel chair for five years. She had to retire as a university professor last October, but works out 10 hours a week with her personal trainer, water aerobics, horse back riding, and physical therapy. I have lymphoma, which now transformed into acute leukemia. I also have 27 degrees of scoliosis in my back which causes consider pain when I walk or stand for extended of time. Our adopted son was a troubled youth who eventually spent some time in prison. We've had some headwinds, but came by them honestly. Believe me, these challenges do not make me happy. But being happy shouldn't be one's goal. 'Happy' is an illusion created by circumstances. We win; we're happy. The stock market goes up; we're happy. We put ourselves in a vulnerable
position when a litany of things must go right before we're we're satisfied. Take a look at
the Exodus Bible story. Because the children of Israel toiled for 430 years as slaves, they lost their institutional memory of who God was and who they were. Then, Moses showed up unannounced and called down 10 plagues. When God was through with the Egyptians, they gave the Israelites gold and silver and begged them to leave. The Israelites followed a pillar of fire, watched God part the Red Sea and ate manna from heaven. They encountered 'unexpected positive events', the text book definition for 'happy'. However, in the end they grumbled against God and worshipped an idol. What went wrong? I always felt history treated the Israelites unfairly. God performed fantastic miracles on their behalf and the grumbled. The Exodus story is true, I just don't think it's accurate. What's lost from their story is how their circumstances changed. To get an idea what it must have been like to march across a desert, look at the experience of the a Donner Party. In the summer of 1846 they were part of a mass migration across the western United States that crossed the Wasatch Desert in Utah. Their diaries tell the story:
On the third day the water ran out. That night, crazed with thirst, the Reed's oxen bolted into the desert and could not be found. The family took what belongings they could carry and started out. Papa carried Thomas and the rest of us walked. We got to the Donner's wagon and laid down on the ground. We spread a shawl down and another over us and put the dogs on top. The wind blew very hard and if it had not been for the dogs we would have frozen. The next day the shattered emigrants stumbled out of the salt desert. It had been a disaster. It had taken five days to cross the 80-mile desert. Thirty-six oxen died. Anguish and dismay filled all their hearts. Husbands bowed their heads, appalled at the situation of their families. Some cursed Hastings for the misrepresentation of the distance. Others in tearless agony clasped their children to their bosoms. --The Donner Party, American Experience WBGG/PBS.
The Israelites who followed Moses must have been just as broken. That's a far cry from Exodus 14:8 that described them marching 'boldly' into the desert. They didn't hit the wall because of poor pacing or lack of heat training. They lost their happiness, their faith, because it depended on
circumstances. Did you see the 2003 movie The Recruit? It was a film about a CIA training academy that stared Colin Farrell and Al Pacino. In one scene, Colin Farrell was supposedly captured by the Russians, denied sleep, food, beaten and eventually gave up some information. He failed out of the program and was in despair, until his instructor, Al Pacino, explained the situation to him. "Everybody breaks! That's the point of the exercise. The darn thing doesn't stop until you do!" I think the children of Israel faced the same kind of test. If they had been stronger and braver, they simply would have made it further into the desert before they crashed.
Sometimes we think God will protect us because we're Christians. If we just trust God, we'll somehow live under an umbrella of Holy protection. You've heard the joke, don't speed because the angels blow off at 56 miles an hour. Look at Exodus 14:1. After the Israelites left Egypt, God told
Moses to turn them around and camp by the Red Sea. Tactically, this was a terrible idea that trapped them between the shore and Pharaoh's army. But God didn't make a mistake and He didn't do random. And, he didn't create the crisis to save them; He put them in harm's way so they could learn something. In Exodus 14:14, Moses said, "The lord will fight for you; you need only be still." God was telling them that they had absolutely no responsibilities what so ever; just watch and learn. When God destroyed the Egyptians, it was the first step in showing them their identity. At the time, they didn't understand their journey to the Promised Land would cross both a desert and a learning curve.
In chapter 15, Moses led them across the sand for three days to a pool of bitter water. After God purified the water, He began to teach them in verse 26: "If you listen carefully to the voice of The Lord your God and do what is right in his eyes, if you pay attention to his comments and decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am The Lord who heals
you." God was putting them on notice. He performed a second miracle, but he was going to expect more from them in the future.
Chapter 16 finds the Israelites deeper in the desert and starving. God provided quail at night and
manna in the morning, but gave them two simple rules to follow: don't hoard the manna or look for it on the Sabbath. These rules sound more like placebos than laws. There was no benefit from breaking them, such as lying to get out of trouble. Certainly they would have learned quickly enough that the manna spoiled over night and that it would not be available on the Sabbath. The purpose of the rules was to give the people the opportunity to obey God and please him. Each time God did a miracle, He expected more from the people.
In chapter 17, the children of Israel were so dehydrated they were about to stone Moses in full revolt. God told Moses to walk ahead of the people to a rock and promised to stand there with him. WhenMoses struck the rock with his staff, water flowed for the people to drink. The lesson learned was that God was still among them. When we really know how God feels about us and the price he paid to have us near him, we will have joy, no matter what life brings.
We're no better or worse than the Isralites. We spend too much time thinking we would be happy if God just performed some miracles for us. God did dozens of miracles for the Israelites and they fell down before golden calf. We have it backwards. God doesn't want us to be happy; he wants us to be joyful. Ranan is a commonly used Hebrew word for joy and it means 'to overcome'. To find joy we don't need more of God's attention, He needs more of ours. Joy is the result of gratitude and is directly proportional to the grace one is received or at least to the perception of grace. We should never get over being saved. Think of it this way: joy comes from LSD, long slow distance with God. It is what you get when you understand the relationship. Knowing who God is isn't enough; you must also understand who you are. Otherwise, it's nothing but junk miles that slow you down. And
like endurance, joy lasts a long time. Miracles are great, but they're not free; they always come with more responsibility.
So how do Sherry and I handle our problems? Sherry deals with her disability the best she can, but
doesn't let it define her. After 15 years with primary progressive MS, she still has a temporary
handicap hangtag in her van. My experience running ultra-marathons and riding my bike across the US provides a well to draw from. When one goes long, the body just breaks down it's a constant battle eat enough calories and manage fatigue. That's why an ultra-runner is allowed to have a pacer when things get tough. The way I see it, cancer is just another ultra and I plan to go as far as I can until I meet up with my Pacer (a religious reference in case I was being to subtle). God's a good God. He's just as heartbroken over Sherry's MS as we are. God didn't cause my cancer. If he did, I should just accept it and do nothing to get better. I'm in remission now, but the bone marrow transplant may not work. I'll need joy, and the way to find it, and to keep it, is to remember that God is standing beside me by the rock.
I'd like to leave you with a final verse: Exodus 4:21, "See to it that you perform all the wonders that I have given you the power to do."
I've mentioned several times that I'm a faith-based Christian. I'd like to explain what that means. I did an interesting Bible study 2 1/2 years ago after I was diagnosed with Follicular non-Hodgkin's Lymphoma, which was defined as a slow growing, but in curable cancer:
Our lives didn't turn out like we planned. Sherry was diagnosed with primary-progressive MS 15 years ago and has been in a power wheel chair for five years. She had to retire as a university professor last October, but works out 10 hours a week with her personal trainer, water aerobics, horse back riding, and physical therapy. I have lymphoma, which now transformed into acute leukemia. I also have 27 degrees of scoliosis in my back which causes consider pain when I walk or stand for extended of time. Our adopted son was a troubled youth who eventually spent some time in prison. We've had some headwinds, but came by them honestly. Believe me, these challenges do not make me happy. But being happy shouldn't be one's goal. 'Happy' is an illusion created by circumstances. We win; we're happy. The stock market goes up; we're happy. We put ourselves in a vulnerable
position when a litany of things must go right before we're we're satisfied. Take a look at
the Exodus Bible story. Because the children of Israel toiled for 430 years as slaves, they lost their institutional memory of who God was and who they were. Then, Moses showed up unannounced and called down 10 plagues. When God was through with the Egyptians, they gave the Israelites gold and silver and begged them to leave. The Israelites followed a pillar of fire, watched God part the Red Sea and ate manna from heaven. They encountered 'unexpected positive events', the text book definition for 'happy'. However, in the end they grumbled against God and worshipped an idol. What went wrong? I always felt history treated the Israelites unfairly. God performed fantastic miracles on their behalf and the grumbled. The Exodus story is true, I just don't think it's accurate. What's lost from their story is how their circumstances changed. To get an idea what it must have been like to march across a desert, look at the experience of the a Donner Party. In the summer of 1846 they were part of a mass migration across the western United States that crossed the Wasatch Desert in Utah. Their diaries tell the story:
On the third day the water ran out. That night, crazed with thirst, the Reed's oxen bolted into the desert and could not be found. The family took what belongings they could carry and started out. Papa carried Thomas and the rest of us walked. We got to the Donner's wagon and laid down on the ground. We spread a shawl down and another over us and put the dogs on top. The wind blew very hard and if it had not been for the dogs we would have frozen. The next day the shattered emigrants stumbled out of the salt desert. It had been a disaster. It had taken five days to cross the 80-mile desert. Thirty-six oxen died. Anguish and dismay filled all their hearts. Husbands bowed their heads, appalled at the situation of their families. Some cursed Hastings for the misrepresentation of the distance. Others in tearless agony clasped their children to their bosoms. --The Donner Party, American Experience WBGG/PBS.
The Israelites who followed Moses must have been just as broken. That's a far cry from Exodus 14:8 that described them marching 'boldly' into the desert. They didn't hit the wall because of poor pacing or lack of heat training. They lost their happiness, their faith, because it depended on
circumstances. Did you see the 2003 movie The Recruit? It was a film about a CIA training academy that stared Colin Farrell and Al Pacino. In one scene, Colin Farrell was supposedly captured by the Russians, denied sleep, food, beaten and eventually gave up some information. He failed out of the program and was in despair, until his instructor, Al Pacino, explained the situation to him. "Everybody breaks! That's the point of the exercise. The darn thing doesn't stop until you do!" I think the children of Israel faced the same kind of test. If they had been stronger and braver, they simply would have made it further into the desert before they crashed.
Sometimes we think God will protect us because we're Christians. If we just trust God, we'll somehow live under an umbrella of Holy protection. You've heard the joke, don't speed because the angels blow off at 56 miles an hour. Look at Exodus 14:1. After the Israelites left Egypt, God told
Moses to turn them around and camp by the Red Sea. Tactically, this was a terrible idea that trapped them between the shore and Pharaoh's army. But God didn't make a mistake and He didn't do random. And, he didn't create the crisis to save them; He put them in harm's way so they could learn something. In Exodus 14:14, Moses said, "The lord will fight for you; you need only be still." God was telling them that they had absolutely no responsibilities what so ever; just watch and learn. When God destroyed the Egyptians, it was the first step in showing them their identity. At the time, they didn't understand their journey to the Promised Land would cross both a desert and a learning curve.
In chapter 15, Moses led them across the sand for three days to a pool of bitter water. After God purified the water, He began to teach them in verse 26: "If you listen carefully to the voice of The Lord your God and do what is right in his eyes, if you pay attention to his comments and decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am The Lord who heals
you." God was putting them on notice. He performed a second miracle, but he was going to expect more from them in the future.
Chapter 16 finds the Israelites deeper in the desert and starving. God provided quail at night and
manna in the morning, but gave them two simple rules to follow: don't hoard the manna or look for it on the Sabbath. These rules sound more like placebos than laws. There was no benefit from breaking them, such as lying to get out of trouble. Certainly they would have learned quickly enough that the manna spoiled over night and that it would not be available on the Sabbath. The purpose of the rules was to give the people the opportunity to obey God and please him. Each time God did a miracle, He expected more from the people.
In chapter 17, the children of Israel were so dehydrated they were about to stone Moses in full revolt. God told Moses to walk ahead of the people to a rock and promised to stand there with him. WhenMoses struck the rock with his staff, water flowed for the people to drink. The lesson learned was that God was still among them. When we really know how God feels about us and the price he paid to have us near him, we will have joy, no matter what life brings.
We're no better or worse than the Isralites. We spend too much time thinking we would be happy if God just performed some miracles for us. God did dozens of miracles for the Israelites and they fell down before golden calf. We have it backwards. God doesn't want us to be happy; he wants us to be joyful. Ranan is a commonly used Hebrew word for joy and it means 'to overcome'. To find joy we don't need more of God's attention, He needs more of ours. Joy is the result of gratitude and is directly proportional to the grace one is received or at least to the perception of grace. We should never get over being saved. Think of it this way: joy comes from LSD, long slow distance with God. It is what you get when you understand the relationship. Knowing who God is isn't enough; you must also understand who you are. Otherwise, it's nothing but junk miles that slow you down. And
like endurance, joy lasts a long time. Miracles are great, but they're not free; they always come with more responsibility.
So how do Sherry and I handle our problems? Sherry deals with her disability the best she can, but
doesn't let it define her. After 15 years with primary progressive MS, she still has a temporary
handicap hangtag in her van. My experience running ultra-marathons and riding my bike across the US provides a well to draw from. When one goes long, the body just breaks down it's a constant battle eat enough calories and manage fatigue. That's why an ultra-runner is allowed to have a pacer when things get tough. The way I see it, cancer is just another ultra and I plan to go as far as I can until I meet up with my Pacer (a religious reference in case I was being to subtle). God's a good God. He's just as heartbroken over Sherry's MS as we are. God didn't cause my cancer. If he did, I should just accept it and do nothing to get better. I'm in remission now, but the bone marrow transplant may not work. I'll need joy, and the way to find it, and to keep it, is to remember that God is standing beside me by the rock.
I'd like to leave you with a final verse: Exodus 4:21, "See to it that you perform all the wonders that I have given you the power to do."
Wednesday, July 16, 2014
Wed., July 16
Still nothing but good news on medical front. Recent bone marrow biopsy looked fine. I had no problems with handling the three chemo drugs (including spinal injection) or the five other pre or post chemo drugs. I had nice visit with my wife and enjoyed reading chapters in Ender's Game; however, my great, polite mood has been steadily degrading since 5:00 pm. I forced down maybe a third of a cheese burger because I know I need to eat something. I'm doing the same things all the other cancer patients are doing. I didn't invent being a cancer patient. Still, it's odd to bang down chemo like like they're push-ups. Taking poison all day is just like working out; it's good for you. Then, nice people come in and out all day to bring me things, take vital signs and wish me well. It's just tiring. Plus, it's always, how are you Mr Ryan? Did you have a bowl movement today Mr Ryan? They know so much about me, but I really am just one of their six patients today and then they are off for two days. I've lost my sense of humor and I'm going to bed.
P.S. As Christians we learn not to interpret the world according to how we feel. Emotions never are supposed to help you make decisions. That's a good thing tonight, because I feel more like kicking a trash can than reciting a verse.
P.S. As Christians we learn not to interpret the world according to how we feel. Emotions never are supposed to help you make decisions. That's a good thing tonight, because I feel more like kicking a trash can than reciting a verse.
Monday, July 14, 2014
Monday, July 14
I met with Dr Patel this afternoon. My CT scan shows that my tumors have all shrunk to less than a centimeter. I was originally diagnosed with 25 tumors and experienced a 'spontaneous regression' (defined as a walnut sized tumor disappearing without any drug treatments). Last Thursday's bone marrow biopsy test results were't in yet, but the one just before the 1B chemo looked great. Previously, the leukemia was less than 1/2%, but showed evidence of a lot of dead leukemia cells. Doc said all the dead cells are gone and my bone marrow cells are healthy and no leukemia present: 'definitive remission'. They topped me off with three pints of blood last week and a bag of platelets. So, despite feeling a bit off, I go back in for 2A chemo in great health. They have identified two great looking, young donors: one man, one woman. I can use a woman if she hasn't been pregnant (I don't know why). They both responded quickly and sent in blood samples. They are discussing dates, which sound like a transplant in 3-4 week. Long times in hospital annoy me, but all is going great so I shouldn't complain. Tomorrow's admission will have 5 days of chemo. I don't know if there are extra days for recovery of immune system. The transplant will be a minimum of three weeks. I get another heavy dose of chemo at time of transplant to totally kill off all my bone marrow. Odds of success? The doc wouldn't say because of my rare transformation from lymphoma. She said there were only a couple cases in the literature. I think my ALL leukemia odds are a bit better than 60%, because my numbers look good and there are two really good matching donors. Then, you throw in the fact that I have two diseases and it sounds like the odds go down. Who knows? In the end, everyone is a study of one. There is a path to a cure. I will exercise my faith, because I want to survive and that's what I've been taught to do as a Christian. In the end, a cure is not as important as relationship with God. All's well; the cancer isn't what I'm focused on.
Funny. Sherry prays for me whenever she wakes up at night. That sounds quaint, except I get up hourly to pee. On the list of things to worry about, frequent urination is pretty low in the list.
I road 70 minutes on bike yesterday, but am paying for the 'irrational exhuberance' today.
Funny. Sherry prays for me whenever she wakes up at night. That sounds quaint, except I get up hourly to pee. On the list of things to worry about, frequent urination is pretty low in the list.
I road 70 minutes on bike yesterday, but am paying for the 'irrational exhuberance' today.
Saturday, July 12, 2014
Saturday
People are beginning to complain about me going off the grid. The last week I received 3 units of blood, playlets, a CT scan and another bone marrow biopsy. The doc is topping me off before the 2A chemo on 7/15-7/20. I'll see her 3:00 Monday to hear test results. When I was admitted in May the under current to everything was negative: we don't know what to do, you have a genetic expression for a very aggressive leukemia, we've never seen this kind of transformation before. Under best case I was looking at a 40% cure rate and the doc sounded a lot more negative than that. Then, they started chemo and my blood numbers and biopsy results all looked great. I handled the chemo without a sweat, save two nights of nightmares and bouts of frantic peeing. I went in very ill, but in great shape. Now I expect to hear that I am in remission and scheduled for a bone marrow transplant, but I have essentially been in bed for 45 days and feel like crap. I seem to maintain a low grade (99.6 temp) which annoys me. I am either shivering or sweating. The next round of chemo scares me more than the first two rounds. Time will tell. My odds now are more like 60%. Yea, that means there is a 40% chance the transplant doesn't work and the leukemia comes back and I die within 18 months. Sherry and I feel blessed to be where we are. I will post a Bible study I did a couple years ago soon and hope some of you will find it encouraging. I'll post again Monday night.
It's been a good time of year to be ill...the Tour D'France and World Cup have been on a lot.
It's been a good time of year to be ill...the Tour D'France and World Cup have been on a lot.
Tuesday, July 8, 2014
Tuesday, July 8th
Feeling good, but still get real winded if I do anything.
Sherry went to UNT to work out with her personal trainer.
Thursday's clinic schedule looks challenging:
7:15 appt for CT scan,
10:30 lab work,
11:30 appt with PA (physican's assistant) and bone marrow biopsy,
1:30 recieve blood transfusion,
3:00 appt with Dr Patel.
So far, everything is working. ;)
Sherry went to UNT to work out with her personal trainer.
Thursday's clinic schedule looks challenging:
7:15 appt for CT scan,
10:30 lab work,
11:30 appt with PA (physican's assistant) and bone marrow biopsy,
1:30 recieve blood transfusion,
3:00 appt with Dr Patel.
So far, everything is working. ;)
Monday, July 7, 2014
Monday, July 7th
Tough day at the clinic. The short walk from waiting room to get my vital signs spiked my pulse to 234. This happens so often I no longer think it's an error. After a couple minutes it falls back to 115 or do. My labs show low white blood cell count, which probably explains why I am so breathless all the time. I was also told I need playlets (bleed risk) today. So, I wait an hour and a half in the waiting room before a nurse comes out and tells me they ran out. She suggests I go to cafeteria for lunch and come back in 1.5-2 hours. Apparently, they sent someone to the Carter Blood Center for more. Then, we can do the infusion, which will take 1-2 hours. Bummer! I'm just not feeling up for this, but have no choice.
P.S. The UT Southwestern valet parking company lost my car for 30 minutes. ;)
P.S. The UT Southwestern valet parking company lost my car for 30 minutes. ;)
Sunday, July 6, 2014
Sunday, July 6th
Davy and Pat drove from MS to spend Friday evening and Saturday, July 4th with us. Davy's my best friend from high school. We had plans to go out with Katie and Ike to the Fort Woth Stockyards for barbque, but I started feeling poorly and took a hour plus nap. When I came back to the family room, they told me we were going someplace easier and cooler: The Gaylord (big Las Vegas resort style hotel in Grapevibe). I then got frustrated looking for Tylenol and threw a bunch of medicine bottles on the floor. Obviously, it was time for another nap; this one about 90 minutes. When I emerged again, I was told The Gaylord had too much walking, so we were just going out to eat. I just felt so exhausted; however, I did better and no one suggested ordering pizza delivery.
Saturday I went into the clinic and got a unit of blood, which to me is the same thing as oxygen. I felt much better today, but am amazed at how tired I get.
Doing well, but to tired to write anything inspirational or intligent.
Saturday I went into the clinic and got a unit of blood, which to me is the same thing as oxygen. I felt much better today, but am amazed at how tired I get.
Doing well, but to tired to write anything inspirational or intligent.
Thursday, July 3, 2014
Thursday, July 3
Yesterday was another very tired day. If I stood up too quickly, I'd feel like I was about to topple over. If I walked from the car inside a business, I would feel my pulse race towards 200 and I would have to lean against a counter, totally breathless. Today is much better.
I went to the cancer clinic this morning. They drew blood for labs, but didn't need to give me any blood product infusions. I come in every Monday and Thursday. On Thursday, July 10, I will have a bone marrow biopsy to see where I stand. On July 15th (moved back one day), I will go back into hospital for the A portion of the second round of chemo. Courtney, Dr Patel's PA, said they are not planning to give me the B portion of chemo before transplant, which may be scheduled for August 5th, at the earliest.
Transplant rules do no permit exchange of personal information between donor and recipient until one year after transplant. I guess they want to have an idea it is working before the two parties have an opportunity to meet. Personally, I'd like to know who saved my life and say 'thank you'. Got to be patient.
My old college roomie said he was praying Psalm 27 over me this morning. It's all very good, but id will pass along vs. 13 and 14, "I will see the goodness of The Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
P.S. We found another straggler under Sherry's car seat...a jar of salad dressing. Now we have them all. I hope.
I went to the cancer clinic this morning. They drew blood for labs, but didn't need to give me any blood product infusions. I come in every Monday and Thursday. On Thursday, July 10, I will have a bone marrow biopsy to see where I stand. On July 15th (moved back one day), I will go back into hospital for the A portion of the second round of chemo. Courtney, Dr Patel's PA, said they are not planning to give me the B portion of chemo before transplant, which may be scheduled for August 5th, at the earliest.
Transplant rules do no permit exchange of personal information between donor and recipient until one year after transplant. I guess they want to have an idea it is working before the two parties have an opportunity to meet. Personally, I'd like to know who saved my life and say 'thank you'. Got to be patient.
My old college roomie said he was praying Psalm 27 over me this morning. It's all very good, but id will pass along vs. 13 and 14, "I will see the goodness of The Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
P.S. We found another straggler under Sherry's car seat...a jar of salad dressing. Now we have them all. I hope.
Tuesday, July 1, 2014
Tuesday, July 1
I felt much stronger today. I didn't get on the bike or go to the gym, but I go out for a sausage biscuit for breakfast, followed by Wal Mart, Chase, post office and fertilized the flowers with Miracle Grow. This may sound like a typical Saturday morning to you,
but it was a lot for me. Sometimes I get winded, so I lay down. My brother has me watching the World Cup. The US lost to Belgiun 2-1, but could have lost by much more.
When I came home yesterday I found Sherry trapped in her mini van...well, at least surrounded by groceries. She went to Sprouts to load up on veggies; however, a quick stop had everything on the floor and under her wheelchair. She extricated herself without the loss of a single banna, although we did find a jar of spaghetti sauce rolling around this afternoon. Sherry's doing well. She went to an appointment with her person trainer this morning and a ladies church group. I went out for pizza.
but it was a lot for me. Sometimes I get winded, so I lay down. My brother has me watching the World Cup. The US lost to Belgiun 2-1, but could have lost by much more.
When I came home yesterday I found Sherry trapped in her mini van...well, at least surrounded by groceries. She went to Sprouts to load up on veggies; however, a quick stop had everything on the floor and under her wheelchair. She extricated herself without the loss of a single banna, although we did find a jar of spaghetti sauce rolling around this afternoon. Sherry's doing well. She went to an appointment with her person trainer this morning and a ladies church group. I went out for pizza.
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