Tired. I feel fine, but get winded very easily. I walked into the clinic today and sat down for 10 minutes before a nurse took my vitals. My pulse was 130. The doc asked if I was still working out. Yes, but only if you count walking around the house as exercise. She said not to worry; it comes with chemo. The first round (A and B weeks) came and went with little hassle: a few headaches, three throw-ups, and some tired days. My weight has dropped 14 pounds, from 191 to 177. I've lost a lot of muscle mass from being mostly in bed for five weeks. I may miss the muscles on July 14 when I go back into the hospital for five more days of chemo (A). There just isn't anything to do about it now. Too tired.
My brother, Don, turned out not to be a bone marrow match; however, Dr Patel said they found hundreds of matches on the national data base. I guess I fell in the genetic sweet spot. They hope to narrow the list down to maybe three willing young men and do it early August. The state of my disease must fall below 0.2% leukemia in bone marrow to proceed. It was 0.45% (down from 93%) before the last five days of chemo. Then, the transplant has a success rate of about 60%. The odds fall to 10% if the leukemia returns and they are able to attempt a second transplant. So, the 0.2% looks within reach the the odds are I will have a successful transplant. The four hurdles I had to hit in a row appear to be down to one or two. The doc ordered another bone marrow biopsy in about 10 days. Can you say 'zzzzzzzzz'? (Sorry, that was the sound of the power drill going into my hip again.
Ok, it sounds like I will have many bone marrow matches to choose from; however, other cancer patients won't be so lucky. If you would like to join the registry (I did it 25 years ago), all you need to do is Google 'Be The Match'. It tells you how.
I'm going to pass along a verse a friend sent me, Jeremiah 29:21: "For I know the plans I have for you, declares The Lord, plans to prosper you and not to harm you, plans to give you hope and a future." I like this verse. I claim it. However, I understand it's not an Easy button. We don't control Him; He loves us, which is great by me.
Monday, June 30, 2014
Saturday, June 28, 2014
Saturday
I finished the five days of chemo and was released from the hospital yesterday around 2:00. I have to admit it's finally making me feel I'll. I threw up in a Wal Mart bag on the way home and a couple more times during the night. Last night my temp slowly rose to 100.5, but then settled down. I took some nausea medicine this morning and was able keep some Raisin Bran down.
Sherry was a trooper yesterday. I left the hospital with several exotic cancer prescriptions, which our local Wal Mart didn't have. So Sherry went on a scavenger hunt for about four hours and came home with them all. She also created a schedule for me to follow in taking them all, which included setting the alarm for 2:00 am for the steroid eye drops.
I have a Monday afternoon appointment with my oncologist. I think I'm doing about as well as I could at this stage.
I'm too tired to think of anything insightful today.
Sherry was a trooper yesterday. I left the hospital with several exotic cancer prescriptions, which our local Wal Mart didn't have. So Sherry went on a scavenger hunt for about four hours and came home with them all. She also created a schedule for me to follow in taking them all, which included setting the alarm for 2:00 am for the steroid eye drops.
I have a Monday afternoon appointment with my oncologist. I think I'm doing about as well as I could at this stage.
I'm too tired to think of anything insightful today.
Wednesday, June 25, 2014
Wed, June 25, 2014
Weird. Last night I took a Benadryl to help me sleep. It must have interacted with some other drug. Although it didn't put me to sleep, it totally drugged me. I could hardly lift my head off the pillow or roll over. After about 45 minutes it wore off and I went to the bathroom and then fell asleep easily. I've never had a drug have such a strong affect on me.
Today was more chemo, including one IV that lasted 22 hours and one spinal injection, which required a road trip down to x-ray.
I woke at 6:00 am feeling rested despite the 3:00 am vitals and blood drawing interuption. I also had to get up and pee maybe 10 times. I continue to receive IV bags of fluid to wash out chemo residue. This afternoon they wanted to drain me of fluids before the spinal chemo injection, so I was given a pill that made me dizzy and caused me to really pee a lot for two hours. The nurse turned on the bed alarm, so I had to sort of roll over and pee looking out at the other wing of the hospital. I hope there's some kind of reflective film on the glass; otherwise I put on quite a show. It was either look out the window or face visitors coming in the door. Oh well, this reminds me of the story about runners peeing during the Badwater 135-mile ultra. They run down a highway in the desert, so there are no bushes or trees. The difference between being discrete and flagrant when cars drive by is do you point the other way or just give a friendly little wave.
You know what I used to worry about? My son struggled quite a bit growing up. I was born with some curvature of the spine, which turned into a degenerative condition with 27 degrees of scoliosis that causes pain to walk or stand. Three years ago, I was diagnosed with Follicular non-Hodgkin's Lymphoma, an in curable cancer. My wife has been seriously handicapped by MS. Then my cancer transformed into leukemia, which almost killed me. The doc repeatedly told me that I am a high risk patient with a very aggressive disease. When I began running ultras I read everything I could get my hands on. I could tell you everything about hydration, monitoring salt intake to alleviate cramps, over-training, etc. It didn't do any good. The only way I could learn anything was to screw up and look back at the book and go, 'Oh, so that's what they mean about calorie bonking.' I'd like to think I prepared myself to face bad news, but I did it all wrong. Having a sense of humor, a stiff upper lip, and a high pain threshold only lasts so long. If you've ever run a marathon you understand the concept of 'hitting the wall'. I always thought the children of Israel got a bad reading in the a Bible. You know the story. God performed a ton of miracles and they did nothing but complain and rebel. Think about it. If someone marched you into the desert, a good attitude would have gotten you maybe another 20 miles, but you would have eventually started grumbling. What I've learned through this process is that what one needs is faith, which is more of a gift than a attribute. Pastor Todd said, 'Faith always looks like this; it always produces like this.' He was talking about strength coming from God, not inside yourself. So what do I worry about now? To be honest, not much; it's not about me. I get to play a roll. It's like running another 100-miler, and anyone who trains and runs 100's knows you don't finish them all. DNFs (did not finish) happen to everyone, no matter how hard you train. Running a 100-miler is different than a 10-K, where one hopes nothing goes wrong. But in an ultra, you know you will have to deal with blisters, throwing up and getting depressed. So far the chemo is working and the leukemia is in remission. But, it's still early in the race. I'm feeling very blessed and will just keep looking for the next aid station. As they say, any ultra you can walk away from was a good one.
Today was more chemo, including one IV that lasted 22 hours and one spinal injection, which required a road trip down to x-ray.
I woke at 6:00 am feeling rested despite the 3:00 am vitals and blood drawing interuption. I also had to get up and pee maybe 10 times. I continue to receive IV bags of fluid to wash out chemo residue. This afternoon they wanted to drain me of fluids before the spinal chemo injection, so I was given a pill that made me dizzy and caused me to really pee a lot for two hours. The nurse turned on the bed alarm, so I had to sort of roll over and pee looking out at the other wing of the hospital. I hope there's some kind of reflective film on the glass; otherwise I put on quite a show. It was either look out the window or face visitors coming in the door. Oh well, this reminds me of the story about runners peeing during the Badwater 135-mile ultra. They run down a highway in the desert, so there are no bushes or trees. The difference between being discrete and flagrant when cars drive by is do you point the other way or just give a friendly little wave.
You know what I used to worry about? My son struggled quite a bit growing up. I was born with some curvature of the spine, which turned into a degenerative condition with 27 degrees of scoliosis that causes pain to walk or stand. Three years ago, I was diagnosed with Follicular non-Hodgkin's Lymphoma, an in curable cancer. My wife has been seriously handicapped by MS. Then my cancer transformed into leukemia, which almost killed me. The doc repeatedly told me that I am a high risk patient with a very aggressive disease. When I began running ultras I read everything I could get my hands on. I could tell you everything about hydration, monitoring salt intake to alleviate cramps, over-training, etc. It didn't do any good. The only way I could learn anything was to screw up and look back at the book and go, 'Oh, so that's what they mean about calorie bonking.' I'd like to think I prepared myself to face bad news, but I did it all wrong. Having a sense of humor, a stiff upper lip, and a high pain threshold only lasts so long. If you've ever run a marathon you understand the concept of 'hitting the wall'. I always thought the children of Israel got a bad reading in the a Bible. You know the story. God performed a ton of miracles and they did nothing but complain and rebel. Think about it. If someone marched you into the desert, a good attitude would have gotten you maybe another 20 miles, but you would have eventually started grumbling. What I've learned through this process is that what one needs is faith, which is more of a gift than a attribute. Pastor Todd said, 'Faith always looks like this; it always produces like this.' He was talking about strength coming from God, not inside yourself. So what do I worry about now? To be honest, not much; it's not about me. I get to play a roll. It's like running another 100-miler, and anyone who trains and runs 100's knows you don't finish them all. DNFs (did not finish) happen to everyone, no matter how hard you train. Running a 100-miler is different than a 10-K, where one hopes nothing goes wrong. But in an ultra, you know you will have to deal with blisters, throwing up and getting depressed. So far the chemo is working and the leukemia is in remission. But, it's still early in the race. I'm feeling very blessed and will just keep looking for the next aid station. As they say, any ultra you can walk away from was a good one.
Tuesday, June 24, 2014
Tuesday, June 24: Back in Hospital for More Chemo
Vacation's over; back to work. My new labs seemed to indicate an elevated creatinine level, which raises a concern about my kidneys. So, chemo was delayed a day and I received continuous bags of fluids. I noticed the first IV was turned up to a very high flow rate. After a while, a nurse came in and asked if the loud noise was annoying me. Excuse me, is this a trick question? Yes, it annoys me, but what am I disposed to do about it? The chemo and leukemia also annoy me. Can you just please take them away? I divided my evening between relaxing a peeing every 25 minutes, until about 10:30 when they wheeled me down to have an ultra-sound look at my kidneys. Someone was obviously taking something much more seriously than I was. However, in the morning the doc said bone marrow biopsy showed only a residual trace of leukemia (down from 93%) in my bone marrow. A couple other reports are outstanding, but it looks like the chemo is working. No one knows why I seem dehydrated, but the numbers are improving and ultra-sound looked good. I'll start chemo later this morning.
A nurse startled me yesterday when he said he wasn't very busy since they just lost two patients. After seeing the
look on my face, he quickly added, "they went home." I hope to get lost in another 4 days myself.
My new room, 802, is located right across from the nurses station, as opposed to my original room which was at the end of the hall. I try to be compliant, but I guess they wanted to keep a closer watch over me this time.
I weighed 181 when admitted. This morning totaled 181.7.
Notes from talk with Dr Patel. They are still doing tests from last Friday's bone marrow biopsy, but she is very happy with what they know. When I was admitted the leukemia was 93%. She was hoping for less than 5% and it came in at 0.45% (less than 1%). She also said it looks like the new bone marrow cells are getting better. This week's chemo should be over by Friday, but they may keep me Saturday to watch my kidneys. We should hear by the end of the week if my brother, Don, is a donor match. If he is, they won't look for other matches on the national database; they will use him (assuming I'm still willing to vote for Hillary in '16.). ;). Since Dr Patel just looked and I am in remission, there won't be another bone marrow biopsy until we're ready for transplant. And we go to transplant as soon as there is a donor. By the time the donor is found and prepared, I'll still need another round of chemo. Transplant is 6-8 weeks, hopefully.
James 6:63-65 says, "The Spirit gives life; the flesh counts for nothing. The words I have spoken to you--they are full of the Spirit and life"...In verse 65, Jesus went on to say, "This is why I told you that no one can come to me unless the father has enabled them." Here's my prayer, 'Father enable me to understand verse 63: The Spirit gives life; the leukemia counts for nothing. MS counts for nothing. All of our problems count for nothing. The words you have spoken are full of the Spirit and life.'
A nurse startled me yesterday when he said he wasn't very busy since they just lost two patients. After seeing the
look on my face, he quickly added, "they went home." I hope to get lost in another 4 days myself.
My new room, 802, is located right across from the nurses station, as opposed to my original room which was at the end of the hall. I try to be compliant, but I guess they wanted to keep a closer watch over me this time.
I weighed 181 when admitted. This morning totaled 181.7.
Notes from talk with Dr Patel. They are still doing tests from last Friday's bone marrow biopsy, but she is very happy with what they know. When I was admitted the leukemia was 93%. She was hoping for less than 5% and it came in at 0.45% (less than 1%). She also said it looks like the new bone marrow cells are getting better. This week's chemo should be over by Friday, but they may keep me Saturday to watch my kidneys. We should hear by the end of the week if my brother, Don, is a donor match. If he is, they won't look for other matches on the national database; they will use him (assuming I'm still willing to vote for Hillary in '16.). ;). Since Dr Patel just looked and I am in remission, there won't be another bone marrow biopsy until we're ready for transplant. And we go to transplant as soon as there is a donor. By the time the donor is found and prepared, I'll still need another round of chemo. Transplant is 6-8 weeks, hopefully.
James 6:63-65 says, "The Spirit gives life; the flesh counts for nothing. The words I have spoken to you--they are full of the Spirit and life"...In verse 65, Jesus went on to say, "This is why I told you that no one can come to me unless the father has enabled them." Here's my prayer, 'Father enable me to understand verse 63: The Spirit gives life; the leukemia counts for nothing. MS counts for nothing. All of our problems count for nothing. The words you have spoken are full of the Spirit and life.'
Saturday, June 21, 2014
Saturday, June 21
Wednesday night I went out to eat at la Hacienda Ranch with my three close ultra running buddies: Drew, who just finished two 100-mile training weeks, Fred, who just completed the Bryce Canyon 50-miler, and Mark, who is now cross-training in the pool (although he doesn't have enough body fat to stay on the surface of the water). As you can see they wore ridiculous looking bald tops in sympathy with my new chemo look. Needless to say we got a few stares during dinner. We always debate who's turn it is to buy. I chimed in with, "If you ever want me to pay, you better collect it now." It got a laugh an insured I didn't have to pay.
It's been nice to be home. I've had to drop by the UT Southwestern clinic the past two days. Yesterday the doc ordered a bone marrow biopsy/aspiration so she could determine if the chemo is working. So a doctor drilled two new holes in my hip with a power drill and pulled out marrow, blood and a piece of bone. After they deaden the site with a shot, the procedure is no big deal. However, I set a new PR. They checked vitals when it was over and my pulse hit 234, before it steadily fell to the 135 range. A few minutes later and it was more like 90 and everyone relaxed. It's weird. I just get so tired and winded. I walked up the stairs to the clinic and checked in. The receptionist was pretty concerned with my breathing, "Sir, are you ok?" Yep, but I needed to sit down. I took a long nap when I got home.
I go back into the hospital on Monday for 4-5 days of more chemo. The most important health hurdle is my day-30 bone marrow biopsy. Did the chemo kill the leukemia and put me in remission, or is the leukemia not chemo sensitive, which would mean I'm in trouble. I assume yesterday's biopsy is important, but I don't expect to hear any news until Monday. Keep your fingers crossed and say a prayer. It won't matter if I find a suitable bone marrow doner if they can't put me in remission.
Sherry and I will go to Gateway Church this afternoon. I'm looking forward to it, but need to rest up this afternoon.
Love.
It's been nice to be home. I've had to drop by the UT Southwestern clinic the past two days. Yesterday the doc ordered a bone marrow biopsy/aspiration so she could determine if the chemo is working. So a doctor drilled two new holes in my hip with a power drill and pulled out marrow, blood and a piece of bone. After they deaden the site with a shot, the procedure is no big deal. However, I set a new PR. They checked vitals when it was over and my pulse hit 234, before it steadily fell to the 135 range. A few minutes later and it was more like 90 and everyone relaxed. It's weird. I just get so tired and winded. I walked up the stairs to the clinic and checked in. The receptionist was pretty concerned with my breathing, "Sir, are you ok?" Yep, but I needed to sit down. I took a long nap when I got home.
I go back into the hospital on Monday for 4-5 days of more chemo. The most important health hurdle is my day-30 bone marrow biopsy. Did the chemo kill the leukemia and put me in remission, or is the leukemia not chemo sensitive, which would mean I'm in trouble. I assume yesterday's biopsy is important, but I don't expect to hear any news until Monday. Keep your fingers crossed and say a prayer. It won't matter if I find a suitable bone marrow doner if they can't put me in remission.
Sherry and I will go to Gateway Church this afternoon. I'm looking forward to it, but need to rest up this afternoon.
Love.
Tuesday, June 17, 2014
Tuesday, May 17- Going Home
This 21 day hospital stay has been a blessing. When I was admitted I heard things like:
1. You might have died in 24 hours;
2. UT Southwestern nor the Mayo Clinic has ever seen a transformation from lymphoma to leukemia;
3. We're stalling right now. We don't know what chemo treatment to give you. There are only a few known cases;
4. You are high risk;
5. You have a genetic expression for a very aggressive leukemia;
6. You're in renal failure.
That all sounded like I was in real trouble.
Then, I got bags of fluid, which got my kidneys and liver working and allowed my body to flush out the chemo by products. I gained 15 pounds and then quickly lost 33, as I peed out the fluids and lost muscle mass. I weighed in at 178.6 this morning, down 12.4 from admittance and looking and feeling very good. Well, the looking part is questionable, since I have no hair.
To day my ANC rose from 1,600 to 2,200. Because it's still going up, the docs have concluded it's not just the steroids they were giving me. My counts have recovered. I think I am just much more fit than the average cancer patient they see. My hemoglobin was only 7.6 (below 10), so they topped me off with another IV bag. My platelets were 15. Normally they would not give me any until it fell below 10, but since I'm going home I got another IV bag. The nurses started coming in around 3:00 am to get the blood samples to the lab. Then it was pretty continuous vitals signs and new IV bags and more vital signs. I think it will be easier to sleep at home. I will have a Thursaday appointment at the clinic. I won't go home on very many meds, since I have recovered so quickly.
I have also been blessed to have received a gift of faith. Folks God is a good God. The proper response is to be thankful for our blessings, which for me include a very reasonable path to a cure. Thanks for all your support and love.
1. You might have died in 24 hours;
2. UT Southwestern nor the Mayo Clinic has ever seen a transformation from lymphoma to leukemia;
3. We're stalling right now. We don't know what chemo treatment to give you. There are only a few known cases;
4. You are high risk;
5. You have a genetic expression for a very aggressive leukemia;
6. You're in renal failure.
That all sounded like I was in real trouble.
Then, I got bags of fluid, which got my kidneys and liver working and allowed my body to flush out the chemo by products. I gained 15 pounds and then quickly lost 33, as I peed out the fluids and lost muscle mass. I weighed in at 178.6 this morning, down 12.4 from admittance and looking and feeling very good. Well, the looking part is questionable, since I have no hair.
To day my ANC rose from 1,600 to 2,200. Because it's still going up, the docs have concluded it's not just the steroids they were giving me. My counts have recovered. I think I am just much more fit than the average cancer patient they see. My hemoglobin was only 7.6 (below 10), so they topped me off with another IV bag. My platelets were 15. Normally they would not give me any until it fell below 10, but since I'm going home I got another IV bag. The nurses started coming in around 3:00 am to get the blood samples to the lab. Then it was pretty continuous vitals signs and new IV bags and more vital signs. I think it will be easier to sleep at home. I will have a Thursaday appointment at the clinic. I won't go home on very many meds, since I have recovered so quickly.
I have also been blessed to have received a gift of faith. Folks God is a good God. The proper response is to be thankful for our blessings, which for me include a very reasonable path to a cure. Thanks for all your support and love.
Monday, June 16, 2014
Monday, June 16- Bald
Well this morning was interesting. Joyce, the head nurse came in and announced that my ANC (white bloods cells that fight infection) had risen to 1,600, well above the 500 release limit and that she was going to start the paperwork to get out of the hospital by noon. Three days ago my ANC began to climb. It moved to 200, then 600 and to 1,600 this morning. There's just one problem. The doc thinks it's about five days early to see it move so fast. The jump could be a response to all the steroids they are giving me, or because I am simply much more fit than the average cancer patient. So, she's keeping me in one more day. Personally, I like the fitness excuse and celebrated by riding 25 miles on the bike.
As you can see from the selfie, my hair began falling out, so A nurse buzzed it off. At least I look more like a cancer patient now.
The weird transformation from lymphoma to very aggressive leukemia makes me a 'high risk' case. Long term survival is based on four things happening:
1. My day-28 bone marrow biopsy needs to show that the chemo put me in or very close to remission. Doc thinks the odds are 80-90% in my favor.
2. I need to find a matching donor. I was originally told that the odds of finding a match on the national data base fell between 40-50%. Because my ancestory is common Irish/English (there are a lot of them on data based), the doc said my chances are 60%. In addition, I have my brother Don, who has a 25% chance. So, according to Drew, who is given to analysis, my odds of finding a matching donor are 70%.
3. The 'state of my disease' needs to be below 0.2% at the time of transplant, or it won't get done. Dr Patel said the fact that my ANC was rising 5 days early and strong was a good sign. Odds for this one are difficult, but good. Say 60+%.
4. Finally, the transplant needs to work. I'm not sure of odds, but they again appear to be in my favor, assuming I make that far, say 60%.
So the odds of look favorable for each variable. I just need to hit four of them in a row. Like I said, there is hope and a path to a cure, which sure sounds better than when I was admitted.
There are fallback options if I miss the mark on any variable, but the odds of success begin to fall rapidly. The plan is to get me quickly to the bone marrow transplant; hopefully within 2 months.
Here's today's faith insight. I picked it up from reading an article about Matt Chandler, who is the pastor at The Village Church. Sherry and I attended The Village for two years when he was diagnosed with brain cancer and given 2-3 years to live. He handled his situation so well and appears to have beaten the cancer. He cited Matthew 7:24-27:
"Everyone then who hears these words of mine and does them will be like a wise man who builds his house on the rock. And the rain fell, and the floods came, and the winds blew and beat on that house, but it did no fall, because it had been founded on the rock. And everyone who hears these words of mine and does not do them will be like a foolish man who built his house on the sand. And the rain fell, and the floods came, and the winds blew and beat against that house, and it fell, and great was the fall of it." Matt's point was that both houses got hit by the storm. Believing in God doesn't protect us from trials. Faith simply will allows us to properly stand up to them and trust God.
As you can see from the selfie, my hair began falling out, so A nurse buzzed it off. At least I look more like a cancer patient now.
The weird transformation from lymphoma to very aggressive leukemia makes me a 'high risk' case. Long term survival is based on four things happening:
1. My day-28 bone marrow biopsy needs to show that the chemo put me in or very close to remission. Doc thinks the odds are 80-90% in my favor.
2. I need to find a matching donor. I was originally told that the odds of finding a match on the national data base fell between 40-50%. Because my ancestory is common Irish/English (there are a lot of them on data based), the doc said my chances are 60%. In addition, I have my brother Don, who has a 25% chance. So, according to Drew, who is given to analysis, my odds of finding a matching donor are 70%.
3. The 'state of my disease' needs to be below 0.2% at the time of transplant, or it won't get done. Dr Patel said the fact that my ANC was rising 5 days early and strong was a good sign. Odds for this one are difficult, but good. Say 60+%.
4. Finally, the transplant needs to work. I'm not sure of odds, but they again appear to be in my favor, assuming I make that far, say 60%.
So the odds of look favorable for each variable. I just need to hit four of them in a row. Like I said, there is hope and a path to a cure, which sure sounds better than when I was admitted.
There are fallback options if I miss the mark on any variable, but the odds of success begin to fall rapidly. The plan is to get me quickly to the bone marrow transplant; hopefully within 2 months.
Here's today's faith insight. I picked it up from reading an article about Matt Chandler, who is the pastor at The Village Church. Sherry and I attended The Village for two years when he was diagnosed with brain cancer and given 2-3 years to live. He handled his situation so well and appears to have beaten the cancer. He cited Matthew 7:24-27:
"Everyone then who hears these words of mine and does them will be like a wise man who builds his house on the rock. And the rain fell, and the floods came, and the winds blew and beat on that house, but it did no fall, because it had been founded on the rock. And everyone who hears these words of mine and does not do them will be like a foolish man who built his house on the sand. And the rain fell, and the floods came, and the winds blew and beat against that house, and it fell, and great was the fall of it." Matt's point was that both houses got hit by the storm. Believing in God doesn't protect us from trials. Faith simply will allows us to properly stand up to them and trust God.
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