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.
Sunday, June 15, 2014
second post: Sunday, June 15
It's interesting to see how my weight has fluctuated. It was 191 when I was admitted (fat, but fit). Because of the renal failure and chemo, They gave me bags of IV fluid and I gained 15 pounds to 206. I then started peeing and losing muscle mass and dropped 33 pounds to 173. I seem to have stabilized at 175. It was a wild ride. It reminded me of another Jerry Seinfeld joke, "What's the deal with Opra? First, she's fat, then she's thin, then she's fat, then she's thin. Come on! Pick a body type and stick with it."
My pulse rate also took a roller coaster ride. My resting rate is usually around 45-47. After chemo it dropped to 30-35 for several days, which had everyone's attention, although not as much as when a tech mistakenly entered 219 into the computer. It then hovered around 100 for several days, maxing out at 119. They think it went up due to low blood volumn. I'm now back to 62.
I made a call out to my friend Denny the other day about hoping he would be my bone marrow match. Denny was a world class athlete, very fast. However, if I had my dream doner it would be my brother, even though he has very slow twitch muscles. Don is 7 years older and always took care of me. I idolized him when I was the little kid brother. It would be very special if he was the one who saved my life. When I was six, I used to complain that when mom and dad were gone, he always got to be the boss. So one fine day mom trusted me to be the boss. When she came home, Don was sitting on the roof, serving a timeout. I was found guilty of abusing my authority and never got it back again. The hospital will mail him his blood doner kit tomorrow. We're still negotiating the fee; the last offer on the table was an absentee ballot for Hillary in 2016.
As yesterday's near endless blog pointed out, there is a reasonable path to a cure, not only of the leukemia, but also the lymphoma, which is clearly defined in all the literature as 'incurable'. As I said, things have to go right but it's nice to have hope. Romans 8:28 says, "And we know that for those who love God all things work together for good." After all, I met my darling wife because I was mugged in a McDonald's and spent a week in a coma.
My pulse rate also took a roller coaster ride. My resting rate is usually around 45-47. After chemo it dropped to 30-35 for several days, which had everyone's attention, although not as much as when a tech mistakenly entered 219 into the computer. It then hovered around 100 for several days, maxing out at 119. They think it went up due to low blood volumn. I'm now back to 62.
I made a call out to my friend Denny the other day about hoping he would be my bone marrow match. Denny was a world class athlete, very fast. However, if I had my dream doner it would be my brother, even though he has very slow twitch muscles. Don is 7 years older and always took care of me. I idolized him when I was the little kid brother. It would be very special if he was the one who saved my life. When I was six, I used to complain that when mom and dad were gone, he always got to be the boss. So one fine day mom trusted me to be the boss. When she came home, Don was sitting on the roof, serving a timeout. I was found guilty of abusing my authority and never got it back again. The hospital will mail him his blood doner kit tomorrow. We're still negotiating the fee; the last offer on the table was an absentee ballot for Hillary in 2016.
As yesterday's near endless blog pointed out, there is a reasonable path to a cure, not only of the leukemia, but also the lymphoma, which is clearly defined in all the literature as 'incurable'. As I said, things have to go right but it's nice to have hope. Romans 8:28 says, "And we know that for those who love God all things work together for good." After all, I met my darling wife because I was mugged in a McDonald's and spent a week in a coma.
Saturday, June 14, 2014
Sunday, June 15
Yesterday's blog was difficult to write. I had to listen and re-listen to conversation with my doctor to make sense out of the dozen different statistics. It took three hours to write. Blogger can be quite cumbersome. Bottom line- I guess I have better odds than I thought achieving remission after the day-28 bone marrow biopsy. Then, it is just assumed my leukemia will fall below the 0.2% hard line and that the first transplant will work. If it all comes together, it's like pushing the ultimate 'easy' button and I'm cured of leukemia and lymphoma, which had been previously defined as 'incurable'. Just like that. Or, the day-28 biopsy is bad, more chemo reduces odds and they don't find a suitable match and I die soon. I lose count how many times Dr Patel told me is was 'high risk'. I have faith. I would like to be healed, but that's not necessarily what I mean. Faith goes a lot deeper than just a healing. It deals with joy and acceptance, which I posses a lot. After thinking about today's medical report, I think I also found hope. And for all you movie fans out there, 'Hope is a good thing.' Katie, can you name the movie?
Saturday, June 14, 2014
Dr Patel came in and we had a rather complicated conversation. I think the best strategy for anyone to understand it is to just try to repeat what was said.
My ANC count increased slightly, but only as a reaction to steroids. It will still take 5-7 days to truly begin to grow on its own.
What are the odds for day-28 bone marrow progress? Generally speaking, the odds are 80-90% that I will be in remission. However, even if I am in complete remission, it doesn't change the fact that I have aggressive leukemia. If I was in complete remission and they didn't transplant and just continued to give me chemo, the odds that it would return are 70-80%. Dr Patel said she expects the leukemia, or most of it, to be gone on day 28. But if it's gone or still there it's not going to change the fact we move quickly to transplant. Most people go for three or four chemo cycles as they line up a donor and get to transplant. But for me the faster we get to transplant the better. This will take two-three months and in the interim Dr Patel will try to hold me over with chemo.
Odds of success? Dr Patel said when they do those kinds of calculations, they are based on standard risk Acute Lymphoblastic Leukemia (ALL) cases, but I am consider high risk ALL. Even if the bone marrow shows even a little leukemia, it's not going to change the fact that we are going to transplant. We know from the get go this is an aggressive form of ALL and is high risk. If get you into a good remission, we're going to transplant. Whether day-28 results show high risk or low risk, we are going to transplant, because the fact that you have high risk leukemia trumps all the other markers we're looking at.
The second question is what state is my disease in when we go to transplant. The best way to go into transplant is with absolutely no leukemia. The cut-off Dr Patel uses is 0.2%. So if she sees 0.2% or more that's too much leukemia and the transplant will not work. At this point, Dr Patel would have to go back to the drawing board and devise a new chemo regiment to get me into remission. If it is less than 0.2%, they think that tiny little bit of leukemia can be overcome by a transplant. There are two things that can happen. At the time of transplant she will do a bone marrow biopsy. If I don't have any detectable leukemia, or it's less than 0.2%, we proceed to transplant.
If it greater than 0.2%, she stops and I begin chemo again. When we stop and restart chemo, the odds of reaching remission drop from 80-90% down to 30-40%. And if the chemo still doesn't work, the odds drop even more. Dr Patel has patients who saw one or two additional rounds of chemo put them into remission, and she has patients she was never able to get into remission and never received a transplant. This last group had about a 50% survival rate of one year. Some had 60% leukemia and died soon. Others scored just above the 0.2% and lived much longer, before the leukemia took over the body. My best chance for a transplant to work is the original attempt. Patients who have a second transplant see rate of survival drop to 10-20%.
Dr Patel said that with leukemia, the goal is to play your strongest card up front. If the bone marrow biopsy is negative after transplant, it is called a remission and a cure after five years. Just because I get a transplant and go into remission, that doesn't mean I'm out of the woods. They do routine biopsy at 30 days, six months and a year, and annually after that. Apparently, the transplant is dealing with both my lymphoma and my leukemia. I was told lymphoma was incurable, partly because it grew so slowly, but Dr Patel said the transplant is a curative option for lymphoma. If the transplant works, it cures both diseases. I have one biological brother, who is a 1:4 chance of matching as a donor. How do we get him tested? On Monday Dr Patel's assistant will mail Don a kit, which he can take to his doctor. Don will mail the blood test tube back. They have already done my HLA testing.
I was a bit mistaken about getting four days of chemo this week. I received chemo yesterday and will now have three days of steroids from IV bags. Also, my weight went up a little from 173.4 to 174.6.
Friday, June 13, 2014
Friday, June 13
Yesterday was a tough day. I got to admit having a date with destiny regarding my next bone marrow biopsy results made me a depressed. I never left my room. On the other hand, I never physically feel good after receiving a blood infusion. My temp went from averaging just below 98 to 99.5 and I just sort of felt lousy. So the worry and IV sort of teamed up. I feel much better this morning after another really good night's sleep and ready to hear the verdict, probably end of June.
My weight dropped to 173.1; down 18 pounds over 17 days. During the XC I lost fat and gained muscle. Now, I'm losing muscle and gaining fat. The plan is to trade fitness to fight leukemia.
I'll get a bag of platelets today. Chemo is still working because they have to regularly replace red blood cells and platelets.
A few days before I was admitted to the hospital, I saw my family doctor because I had a sinus infection. He gave me a shot of steroids in the hip and scheduled a follow-up visit. Someone from his office called two days ago to remind me of the appointment. I told her I almost died, was diagnosed with acute leukemia, received chemo and was still in the hospital. After a pause, she said, "So, I'll note you won't keep the appointment." I guess she was just interested in her form.
I commented to one of my nurses that I was surprised to see personal commits in a previous oncologists report. It said something like 'Mr Ryan is friendly, easy-going man'. The nurse told me they do that all the time. When I asked her what a negative comment might be, she said something like, 'so and so is an anxious, irritable'. I then started making up outrageous statements, such as, 'Mr X is a complete pain in the #%^, if his cancer doesn't kill him, I will.' Obviously, I've spent far too much time in the hospital.
Dr Patel gave me some more information this morning. My ANC is still at zero and she expects it to stay there for another 5-7 days. Today starts the second week of chemo, which is much easier than the heavy duty first dose. I think may be hooked up to the IV pole for the next four days.
So what does a bad day-28 bone marrow biopsy prognosis mean? If they still find leukemia in my bone marrow, it means these cells are not chemo sensitive. The chance of going into remission are lower, even after changing the chemo to something different. The odds drop that they can achieve complete remission from 90% to about 40-50%. Because the chemo is not working, they would then hurry me along to transplant as soon as they get me into remission. If I have positive leukemia on the day-28 bone marrow, there is a good chance I will retain some minial residual disease (<1%) which would lower the success rate of the transplant. Dr Patel said if the day-28 biopsy shows 5-7% leukemia, it wasn't a big deal. She will proceed with the next next round Hyper CVAD chemo, which are different chemo drugs. I have to confess, I don't totally understand all this. Hopefully, the day-28 biopsy shows I am in complete remission, or that the leukemia, which previously registered at 90%, has been knocked down to 5-7%. Anything higher than that is bad news.
My weight dropped to 173.1; down 18 pounds over 17 days. During the XC I lost fat and gained muscle. Now, I'm losing muscle and gaining fat. The plan is to trade fitness to fight leukemia.
I'll get a bag of platelets today. Chemo is still working because they have to regularly replace red blood cells and platelets.
A few days before I was admitted to the hospital, I saw my family doctor because I had a sinus infection. He gave me a shot of steroids in the hip and scheduled a follow-up visit. Someone from his office called two days ago to remind me of the appointment. I told her I almost died, was diagnosed with acute leukemia, received chemo and was still in the hospital. After a pause, she said, "So, I'll note you won't keep the appointment." I guess she was just interested in her form.
I commented to one of my nurses that I was surprised to see personal commits in a previous oncologists report. It said something like 'Mr Ryan is friendly, easy-going man'. The nurse told me they do that all the time. When I asked her what a negative comment might be, she said something like, 'so and so is an anxious, irritable'. I then started making up outrageous statements, such as, 'Mr X is a complete pain in the #%^, if his cancer doesn't kill him, I will.' Obviously, I've spent far too much time in the hospital.
Dr Patel gave me some more information this morning. My ANC is still at zero and she expects it to stay there for another 5-7 days. Today starts the second week of chemo, which is much easier than the heavy duty first dose. I think may be hooked up to the IV pole for the next four days.
So what does a bad day-28 bone marrow biopsy prognosis mean? If they still find leukemia in my bone marrow, it means these cells are not chemo sensitive. The chance of going into remission are lower, even after changing the chemo to something different. The odds drop that they can achieve complete remission from 90% to about 40-50%. Because the chemo is not working, they would then hurry me along to transplant as soon as they get me into remission. If I have positive leukemia on the day-28 bone marrow, there is a good chance I will retain some minial residual disease (<1%) which would lower the success rate of the transplant. Dr Patel said if the day-28 biopsy shows 5-7% leukemia, it wasn't a big deal. She will proceed with the next next round Hyper CVAD chemo, which are different chemo drugs. I have to confess, I don't totally understand all this. Hopefully, the day-28 biopsy shows I am in complete remission, or that the leukemia, which previously registered at 90%, has been knocked down to 5-7%. Anything higher than that is bad news.
Thursday, June 12, 2014
Thursday, June 12
My lymphoma transformed to leukemia, but I still have both diseases. Doc said chemo treats both, but the more dangerous of the two is the leukemia. So I will have two oncologists: Naina for the lymphoma and Patel for the leukemia and bone marrow transplant, if I make it that far.
I did not have a 'double hit', which refers to two different genetic adnormalities of lymphoma. Apparently this is pretty common with an aggressive transformation. A double hit is bad news, so That's some good news.
How important is the bone marrow biopsy on day 28 (not sure, but think this is day 12 or 13)? Doc said it was very important, because they need to know how much leukemia is left over. The hope is there's nothing. If there is a lot there, it means the chemo didn't work and there is a bad diognosis. I didn't have the heart to ask her what that meant. So, the day 28 bone marrow biopsy sounds pretty cruicial, which is chilling.
ANC's still zero, as expected.
I slept good last night for the first time. I felt ok, so I stayed up for the 11:00 vital signs visit. A tech came in took my blood pressure, pulse and temp. I thought the nurse was going to come in and do something with my PICC line, but she never showed. I finally hit the call button at 11:40 to see what was up. Turns out I was mistaken; she wasn't coming in. Stupid mistake on my part, but I slept good anyway.
As expected, I'm getting another blood transfusion. So I'll be hooked up to the IV pole for maye 3.5 hours. It gives me a headache if they run the volumn faster.
Sherry will be in around 1:00 with some bar-b-que sandwiches. My weight dropped 1.3 pounds yesterday to 174 pounds.
I did not have a 'double hit', which refers to two different genetic adnormalities of lymphoma. Apparently this is pretty common with an aggressive transformation. A double hit is bad news, so That's some good news.
How important is the bone marrow biopsy on day 28 (not sure, but think this is day 12 or 13)? Doc said it was very important, because they need to know how much leukemia is left over. The hope is there's nothing. If there is a lot there, it means the chemo didn't work and there is a bad diognosis. I didn't have the heart to ask her what that meant. So, the day 28 bone marrow biopsy sounds pretty cruicial, which is chilling.
ANC's still zero, as expected.
I slept good last night for the first time. I felt ok, so I stayed up for the 11:00 vital signs visit. A tech came in took my blood pressure, pulse and temp. I thought the nurse was going to come in and do something with my PICC line, but she never showed. I finally hit the call button at 11:40 to see what was up. Turns out I was mistaken; she wasn't coming in. Stupid mistake on my part, but I slept good anyway.
As expected, I'm getting another blood transfusion. So I'll be hooked up to the IV pole for maye 3.5 hours. It gives me a headache if they run the volumn faster.
Sherry will be in around 1:00 with some bar-b-que sandwiches. My weight dropped 1.3 pounds yesterday to 174 pounds.
Wednesday, June 11, 2014
June 11, Wednesday
I try and ride the stationary bike every day to maintain some muscle tone.
I had a friend coming by after 11:00, so I got going a bit earlier this morning on the bike. I managed one hour and 21 miles, sweaty and winded. Then I need a tech to wrap up my right arm PICC line line so I could take a shower. After the bike the shower is a chore. They checked my vitals and 111 showed up for the pulse. Far better than the false 219 from a couple days ago, but higher than is comfortable. Doc said my pulse is above baseline because of low blood volume. I weighed in at 175.3 pounds at 5:00 am. Sherry and I have good friends, Denny and Paula, who live in CO. If I get to choose the bone marrow doner, it would be Denny. He has lots of fast twitch muscles.
I read a little booklet that my friends Juan and Anita gave me, Facing Illness With Hope. It dealt with some initial reactions to receiving very bad news, such as, confusion, anger at God, and asking why did this happen to me. While this hasn't been fun and I've thrown up a couple times and endured chemo night mares and wild bouts of peeing, I know God loves me. James 1:3 says that the testing of faith produces endurance. And anyone who knows me (ultra marathons and cross-country bike ride), knows I love endurance. Yes, my life has been interrupted, but not by cancer and the transformation I hold on to is not lymphoma to leukemia. Donald Miller wrote a book called A Million Miles In A Thousand Years. It put the Biblical story of Job into prospective. God was saying, I know what I'm doing and this whole thing is not about you. Job found contentment and joy outside the comfort, health, or even stability. He learned to care about the story more than he did about himself. There was a great Victor Frankl quote, "I'm a tree in a story about a forest and the story of the forest is better than the story of the tree. For those who read my XC blog, you may remember it. I believed it when things were going well; I believe now when my life is threatened. I listened to a good sermon from Paster Todd Wagner, Watermark Church. He said, "Faith always looks like this; it always
produces like this."
No real medical news to report. My ANC (white bloods cells) remain at zero, which is not unexpected. I don't need any blood transfusions or platelets today.
I had a friend coming by after 11:00, so I got going a bit earlier this morning on the bike. I managed one hour and 21 miles, sweaty and winded. Then I need a tech to wrap up my right arm PICC line line so I could take a shower. After the bike the shower is a chore. They checked my vitals and 111 showed up for the pulse. Far better than the false 219 from a couple days ago, but higher than is comfortable. Doc said my pulse is above baseline because of low blood volume. I weighed in at 175.3 pounds at 5:00 am. Sherry and I have good friends, Denny and Paula, who live in CO. If I get to choose the bone marrow doner, it would be Denny. He has lots of fast twitch muscles.
I read a little booklet that my friends Juan and Anita gave me, Facing Illness With Hope. It dealt with some initial reactions to receiving very bad news, such as, confusion, anger at God, and asking why did this happen to me. While this hasn't been fun and I've thrown up a couple times and endured chemo night mares and wild bouts of peeing, I know God loves me. James 1:3 says that the testing of faith produces endurance. And anyone who knows me (ultra marathons and cross-country bike ride), knows I love endurance. Yes, my life has been interrupted, but not by cancer and the transformation I hold on to is not lymphoma to leukemia. Donald Miller wrote a book called A Million Miles In A Thousand Years. It put the Biblical story of Job into prospective. God was saying, I know what I'm doing and this whole thing is not about you. Job found contentment and joy outside the comfort, health, or even stability. He learned to care about the story more than he did about himself. There was a great Victor Frankl quote, "I'm a tree in a story about a forest and the story of the forest is better than the story of the tree. For those who read my XC blog, you may remember it. I believed it when things were going well; I believe now when my life is threatened. I listened to a good sermon from Paster Todd Wagner, Watermark Church. He said, "Faith always looks like this; it always
produces like this."
Tuesday, June 10, 2014
Tuesday, June 10
My ANC is still zero. They say it will stay there 4-5 days, but once it begins to move it typically jumps. Get it above 500 and they will let me go.
What are the odds of finding a match on the national bone marrow database? Between 30-50%. As an adult, chemo can chase away leukemia, but the odds are high that it will come back. Survival depends on finding a match. They do transplants after about a year.
Could my brother Don be a bone marrow match? We didn't think so, because we're different blood types. The doc said that doesn't matter. We must match tissue samples and the odds are 1 in 4. It's nice to have that option still on the table. Thanks Don.
Dang it! My weight fell off another two pounds to 174.4. I'm eating a lot again, but they can tell I'm still not drinking enough. I was admitted at 191, so I've lost 16.6 pounds, which is a little fat and a lot of muscle mass. Bottom line- I traded fitness for handling the chemo so well. Good trade.
I slept ok early last night, but better during the morning hours. The chemo nightmares are long gone.
What are the odds of finding a match on the national bone marrow database? Between 30-50%. As an adult, chemo can chase away leukemia, but the odds are high that it will come back. Survival depends on finding a match. They do transplants after about a year.
Could my brother Don be a bone marrow match? We didn't think so, because we're different blood types. The doc said that doesn't matter. We must match tissue samples and the odds are 1 in 4. It's nice to have that option still on the table. Thanks Don.
Dang it! My weight fell off another two pounds to 174.4. I'm eating a lot again, but they can tell I'm still not drinking enough. I was admitted at 191, so I've lost 16.6 pounds, which is a little fat and a lot of muscle mass. Bottom line- I traded fitness for handling the chemo so well. Good trade.
I slept ok early last night, but better during the morning hours. The chemo nightmares are long gone.
Monday, June 9, 2014
Alarm bells at camp chemo
I rode the stationary bike for an hour, which seemed pretty easy. A tech then took my vital signs, which showed a 230 heart rate. He entered a note in the system and left. Then the senior level nurses came rushing in to check me out. They were expecting to find me passed out or something, but I was comfortably seated in my reclining chair reading a book. My next set of vitals recorded an 82 pulse and they guessed the machine just spit out gibberish. The nurse in charged said, "Oh, you're the athletic one, aren't you?" Which allowed me to tell one more person about my XC ride. Markus, the tech who recorded the high pulse just came in laughing. He said everyone on the floor is giving him the evil eye and that may come back in just hide out. It was all pretty funny.
By the way, my weight this morning increased from 174.8 to 176.4, my new fighting weight.
I don't know if I mentioned my window blinds. I have two. One dark and one thin. First day here the heavy one fell and two maintenance guys put it back up. Second day, it fell again. They left it alone for a couple days before expelling me from my room for two hours (dust) to fix it. It doesn't go up or down anymore, but at least it's longer on the floor. They can cure cancer, but can't fix the blinds. Which reminds me of an old Jerry Seinfeld joke about Gilligan's a Island: "And what's the deal with the professor? He can make a radio out of a coconut, but he can't fix the hole in the boat."
I did't sleep great last night, but it keeps getting better. The chemo induced nightmares and need to pee all the time seem to be in the past. Yea!
By the way, my weight this morning increased from 174.8 to 176.4, my new fighting weight.
I don't know if I mentioned my window blinds. I have two. One dark and one thin. First day here the heavy one fell and two maintenance guys put it back up. Second day, it fell again. They left it alone for a couple days before expelling me from my room for two hours (dust) to fix it. It doesn't go up or down anymore, but at least it's longer on the floor. They can cure cancer, but can't fix the blinds. Which reminds me of an old Jerry Seinfeld joke about Gilligan's a Island: "And what's the deal with the professor? He can make a radio out of a coconut, but he can't fix the hole in the boat."
I did't sleep great last night, but it keeps getting better. The chemo induced nightmares and need to pee all the time seem to be in the past. Yea!
Sunday, June 8, 2014
Sunday June 8
My ANC (good white blood cells) went to 0, which is what the docs wanted to see. At this point I have no immune system and continue to be at risk to bleed. I mindlessly scratched my shoulder this morning. The nurse noticed the blood and quickly cleaned and bandaged it.
My weight fell again; down to 174.8. Doc said this was probably a bit of dehydration, which is odd since they darned near drowned me last week. I probably haven't been drinking enough. Doc ordered an IV bag of fluid. This is probably why my pulse pretty much doubled to 100 last evening and I have shortness of breath. I certainly don't feel up to getting on the bike today.
They will release me from chemo camp when the ANC gets north of 500, which may take a week. I just got to see how the body responds. I'll then check in at the clinic for blood work; however, doc said they will put me back in the hospital for about a week to do the next round of chemo, which may be about a month out. Bummer.
I slept much better last night. Clearly, sleep has been my biggest problem. I had one bad dream that ended just like all the others- unable to run up a steep hill. However, the rest of the night went well.
Courtney is the daughter of my old ORU roommate, Robin Tull, who is our financial advisor. Courtney and her husband, Adrien, decided to drive down from Tulsa just to visit me. They were great and brought food and nerf guns, which I later flashed to my nurses, with a warning, "If you guys come in at 5:00 am with needles, be prepared to defend yourselves." It got a good laugh.
My weight fell again; down to 174.8. Doc said this was probably a bit of dehydration, which is odd since they darned near drowned me last week. I probably haven't been drinking enough. Doc ordered an IV bag of fluid. This is probably why my pulse pretty much doubled to 100 last evening and I have shortness of breath. I certainly don't feel up to getting on the bike today.
They will release me from chemo camp when the ANC gets north of 500, which may take a week. I just got to see how the body responds. I'll then check in at the clinic for blood work; however, doc said they will put me back in the hospital for about a week to do the next round of chemo, which may be about a month out. Bummer.
I slept much better last night. Clearly, sleep has been my biggest problem. I had one bad dream that ended just like all the others- unable to run up a steep hill. However, the rest of the night went well.
Courtney is the daughter of my old ORU roommate, Robin Tull, who is our financial advisor. Courtney and her husband, Adrien, decided to drive down from Tulsa just to visit me. They were great and brought food and nerf guns, which I later flashed to my nurses, with a warning, "If you guys come in at 5:00 am with needles, be prepared to defend yourselves." It got a good laugh.
Saturday, June 7, 2014
June 7: Another Tough Night Sleeping
Doc reported my ANC was 100; it was 400 yesterday. ANC are the white blood cells that fight infection. The chemo kills them down to near zero and I have to then grow them back to 500 to get released. So it sounds like the ANC is acting normal. It will just take time. They just watch me closely to insure I don't get an infection.
I weighed in at 178.5 pounds today.
I eventually got out of my room mid-afternoon and rode an hour on the hospital stationary bike. It took more effort than the previous day. I had to take a couple short breaks. My running shorts and shirt were wet with sweat. I felt pretty puny after that.
I saw my wife's brother and family, which was fun. They are off to Disneyland today.
Katie and Ike called to say they were coming over but I asked them to pass. I just started getting a headache and felt tired.
By far the hardest part of this process is sleeping. The bed doesn't help. One has to sort of pick one side of the axle that runs down the middle, which raises and lowers the bed. I had one bad dream after another, sort of like train cars interrupted by peeing. The dreams are different, but the same. I'm always ill, someone is always around to assist me, I end up lost and eventually physically trapped somewhere. This is just chemo and a poor ability to simply roll over, but it is very annoying. I also had several nurse/lab tech interuptions between 5:00 and 7:00 a.m. The doc said they were going to reduce the blood the blood draws to once a day which will cut down on interuptions. They let me sleep till 8:00 which was great.
My brother, Don, and Sherry will come around 1:00. I've requested Arby's.
I weighed in at 178.5 pounds today.
I eventually got out of my room mid-afternoon and rode an hour on the hospital stationary bike. It took more effort than the previous day. I had to take a couple short breaks. My running shorts and shirt were wet with sweat. I felt pretty puny after that.
I saw my wife's brother and family, which was fun. They are off to Disneyland today.
Katie and Ike called to say they were coming over but I asked them to pass. I just started getting a headache and felt tired.
By far the hardest part of this process is sleeping. The bed doesn't help. One has to sort of pick one side of the axle that runs down the middle, which raises and lowers the bed. I had one bad dream after another, sort of like train cars interrupted by peeing. The dreams are different, but the same. I'm always ill, someone is always around to assist me, I end up lost and eventually physically trapped somewhere. This is just chemo and a poor ability to simply roll over, but it is very annoying. I also had several nurse/lab tech interuptions between 5:00 and 7:00 a.m. The doc said they were going to reduce the blood the blood draws to once a day which will cut down on interuptions. They let me sleep till 8:00 which was great.
My brother, Don, and Sherry will come around 1:00. I've requested Arby's.
Friday, June 6, 2014
Friday, June 6
When do I get out? My blood counts have been falling, but not fast enough. The docs can give me red blood and platelets from IV bags, but I must grow back my ANC (absolute neutrophil count). ANC cells are the white blood cells that fight bacterial infections. The Doc said, "Chemo sets off a nuclear bomb in your bone marrow and kills everything; red blood cells, white blood cells and platelets, but it takes time for the white blood cells to grow back. When it's grown back to an appropriate level, then we will be able to discharge you. Some people take two to three weeks. Some people take a little longer. I expect for you, about 2-3 weeks. The ANC is the most important indicator of the effectiveness of the chemo therapy. ANC is supposed to go to almost 0. It will stay there for 4-5 days and then start growing back. When you're at 500, you're ok to be discharged."
There was talk of giving me another bone marrow biopsy on day 14 (today is day 7), but it has been delayed to day 28. This relates back to my bizarre transformation from lymphoma to leukemia. Doc said everything seemed to be working and they would just spare me the process. Which is probably another way of saying they are doing all they can and there just isn't any reason to look any earlier.
I weighed in around 180.6, which was down 5.5 pounds from yesterday. I guess it's mostly from peeing off fluids. My Hobbit feet are gradually returning to normal.
I rode an hour on the stationary bike yesterday. That was an important PR (personal record) for me. I went 65 minutes without peeing...by far the longest time since I was admitted. ;)
It's funny how my thinking is distorted. I had a very bad concussion in college and was in a coma for a week. I recovered well, but have always had trouble with names. Two poeple I know real well came by yesterday and I really struggled to pull up their names. Then I passed two nurses in the hall and spoke both their names. Marion said, "Wow, you know everybody's name. That's impressive." I have a different group of nurses every day and night. Remembering their names is more like a party trick. If I keep saying their name in a sentence it seems to stick in my short term memory.
I had a very good day yesterday. I listened to Pastor Todd's sermon about James. Todd is the lead paster at Watermark Church and a guy I've worked out with during personal training sessions. His message dealt with dealing with challenges, which of course I seem to have in abundance right now. I'm simply not concerned about this. I don't feel angry with God. I'm at peace and know God loves me.
There was talk of giving me another bone marrow biopsy on day 14 (today is day 7), but it has been delayed to day 28. This relates back to my bizarre transformation from lymphoma to leukemia. Doc said everything seemed to be working and they would just spare me the process. Which is probably another way of saying they are doing all they can and there just isn't any reason to look any earlier.
I weighed in around 180.6, which was down 5.5 pounds from yesterday. I guess it's mostly from peeing off fluids. My Hobbit feet are gradually returning to normal.
I rode an hour on the stationary bike yesterday. That was an important PR (personal record) for me. I went 65 minutes without peeing...by far the longest time since I was admitted. ;)
It's funny how my thinking is distorted. I had a very bad concussion in college and was in a coma for a week. I recovered well, but have always had trouble with names. Two poeple I know real well came by yesterday and I really struggled to pull up their names. Then I passed two nurses in the hall and spoke both their names. Marion said, "Wow, you know everybody's name. That's impressive." I have a different group of nurses every day and night. Remembering their names is more like a party trick. If I keep saying their name in a sentence it seems to stick in my short term memory.
I had a very good day yesterday. I listened to Pastor Todd's sermon about James. Todd is the lead paster at Watermark Church and a guy I've worked out with during personal training sessions. His message dealt with dealing with challenges, which of course I seem to have in abundance right now. I'm simply not concerned about this. I don't feel angry with God. I'm at peace and know God loves me.
Thursday, June 5, 2014
24 Hours
Conversation with Dr. Anderson this morning:
Doug: How sick was I when I came in? What if I hadn't of come in?
Doc: Bad things would have happened...bad things could have happened. As the cells grow, they just reach a critical mass where they start exploding on their own and that explosion can wreek havoc on your body, dumping out their contents into the cells, and people die because of that. Or, an infection could have come on. Either one of those things would have killed someone in your condition if they didn't come in.
Doug: How quickly?
Doc: Oh, very quickly. We're talking about within 24 hours. If it had reached that critical mass. Your labs were close. Your platelets were low. You could easily have a bleed in your head. You sort of putter along pretty good and then all of a sudden they can turn bad.
Doug: They say I have a gene that shows this is very aggressive. Does that matter?
Doc: It does a little bit. There are some things that need to be done for that and at some point we're going to address it.
Doug: The prognosis seems totally dependent on the bone marrow biopsy?
Doc: Yes.
Doug: So, if you come back a week from now and tell me I'm killing it, I'm in good shape. If it's not killing it, I'm in bad shape?
Doc: Right.
Summary: The doc said things are progressing as we thought. Your platelets went up but are drifting down again because the chemo continues to work through two weeks. He said some people argue that chemo doesn't really start working between week one or two. My red blood cells will drift down probably tomorrow, so I'll probably get another infusion tomorrow. My white blood count is at 5.8, which is about the same as it was. My kidney function looks pretty good. Doc said everythinb looks pretty good and you look good in person.
So today is a relax day. Take pills and vital signs. I think I weighed 187 pounds this morning. I think they came in at 4:30, so it's a bit hazy. I think my weight reached something like 202.6 a few days ago when they pumping me full of fluids. It is such a blessing to not have to pee constantly.
Doug: How sick was I when I came in? What if I hadn't of come in?
Doc: Bad things would have happened...bad things could have happened. As the cells grow, they just reach a critical mass where they start exploding on their own and that explosion can wreek havoc on your body, dumping out their contents into the cells, and people die because of that. Or, an infection could have come on. Either one of those things would have killed someone in your condition if they didn't come in.
Doug: How quickly?
Doc: Oh, very quickly. We're talking about within 24 hours. If it had reached that critical mass. Your labs were close. Your platelets were low. You could easily have a bleed in your head. You sort of putter along pretty good and then all of a sudden they can turn bad.
Doug: They say I have a gene that shows this is very aggressive. Does that matter?
Doc: It does a little bit. There are some things that need to be done for that and at some point we're going to address it.
Doug: The prognosis seems totally dependent on the bone marrow biopsy?
Doc: Yes.
Doug: So, if you come back a week from now and tell me I'm killing it, I'm in good shape. If it's not killing it, I'm in bad shape?
Doc: Right.
Summary: The doc said things are progressing as we thought. Your platelets went up but are drifting down again because the chemo continues to work through two weeks. He said some people argue that chemo doesn't really start working between week one or two. My red blood cells will drift down probably tomorrow, so I'll probably get another infusion tomorrow. My white blood count is at 5.8, which is about the same as it was. My kidney function looks pretty good. Doc said everythinb looks pretty good and you look good in person.
So today is a relax day. Take pills and vital signs. I think I weighed 187 pounds this morning. I think they came in at 4:30, so it's a bit hazy. I think my weight reached something like 202.6 a few days ago when they pumping me full of fluids. It is such a blessing to not have to pee constantly.
Wednesday, June 4, 2014
Late Wednesday night
This is awkward. Typically, I'm very controlled with my emotions. I keep things bottled up and ordered. Now I got this bad cancer news and people who care about me obviously want to wish me well and see how I'm doing. Trouble is, I've felt pretty poorly sometimes and it's just so much work to answer individual emails with much clarity or openess. So, the blog seemed like a perfect tool, except I now feel like I'm giving way too much away personal information. It's uncomfortable, but probably efficient.
Today was very good. Tonight turned out ridiculously stupid. I'm sure I just had a bad reaction to chemo and the blood transfusions, which cause me headaches. Obviously, I have a good excuse to feel angry every now and then, but I got super frustrated trying to post the previous blog. I hate technology, especially after chemo. I pestered my poor wife, who is battling an upper respiratory infection as well as MS and a sick husband with endless angry phone calls about how to get the dang 'paste' button to work. I eventually just emailed my notes to her and she posted it. I battled a balky electric razor for 30 minutes (they won't let risk nicking myself with a blade). I ordered dinner and was able to eat half of it before the smell about made me I'll. I ended up with a temper tantrum more suitable to a 5-year. I've tried to be a model patient this week...stiff upper lip, build up good will, cheerful, etc, but I'm ashamed of how badly I behaved this evening.
There is one ray of hope in my room. At home, I've been known to take frustrations out on plastic kitchen trash cans. They're cheap and it's therapeutic to kick the crap out of them, with little risk of personal injury. Well, there's a trash can in my room that that has already been kicked by a previous resident, who must have had a bad night also.
Today was very good. Tonight turned out ridiculously stupid. I'm sure I just had a bad reaction to chemo and the blood transfusions, which cause me headaches. Obviously, I have a good excuse to feel angry every now and then, but I got super frustrated trying to post the previous blog. I hate technology, especially after chemo. I pestered my poor wife, who is battling an upper respiratory infection as well as MS and a sick husband with endless angry phone calls about how to get the dang 'paste' button to work. I eventually just emailed my notes to her and she posted it. I battled a balky electric razor for 30 minutes (they won't let risk nicking myself with a blade). I ordered dinner and was able to eat half of it before the smell about made me I'll. I ended up with a temper tantrum more suitable to a 5-year. I've tried to be a model patient this week...stiff upper lip, build up good will, cheerful, etc, but I'm ashamed of how badly I behaved this evening.
There is one ray of hope in my room. At home, I've been known to take frustrations out on plastic kitchen trash cans. They're cheap and it's therapeutic to kick the crap out of them, with little risk of personal injury. Well, there's a trash can in my room that that has already been kicked by a previous resident, who must have had a bad night also.
June 4, Leukemia Notes
Leukemia Notes:
Wed June 4
Last night was surreal. I finished round one of hard 4-5 days of chemo. I had Benadryl to help sleep , but probably had to get up 15 times to pee. It was very difficult to control bladder long enough to get it done and get back to bed...only to fall asleep and do it all over again. I peed almost 6 liters between 7 pm and 6 am. Doc came in and said they will stop giving me fluids. When admitted I was in renal failure, now kidneys and liver are working again.
Doc will order another blood transfusion to give more energy. I promised to be like Lance Armstrong and get infusion and get on their stationary bike, but it didn't happen. I am also scheduled for more platelets today.
I was sort of out of it yesterday afternoon/evening and couldn't answer simple questions about who had come to visit me.
Thanks Brad! A wonderful, long-term friend from church came by yesterday. After an hour I asked him to go get me a Jersey Mike's sandwhich. I ate more than 1/2, which was most I've been able to eat at a meal in a week.
This morning I was very hungry and ordered bowls of cereal and two juices.
I had great nurse last night. Thank you Kate. She took very good care of me. I had headache and they are still concerned about internal bleeding. She told me to look into her eyes, then shined a flash light around and asked a ton of questions about bowel movements, badly swollen feet, quivering legs, etc. A lot of sustenance, but not nearly as much fun as looking into my wife's eyes. ;)
Todd, Gateway Church's Men's Paster, Mark, a good business friend, brought along another Christian brother, Gerald, dropped by. 10 minutes later my ultra running buddy, Matt, who is a hoot, and was a hospital Chaplin for 14 years, popped in. It was really, really a good visit. Thank you.
So, chemo is done and I'm just under lock down for a week till my immune system recovers. White blood count was down from 92,000 to 11,000 today (close to normal).
Sent from my iPhone
______________________________________________________
This E-mail and any attachment contains information which is private and confidential and is intended for the addressee only. If you are not an addressee, you are not authorized to read, copy or use the E-mail or any attachment. If you have received this E-mail in error, please notify the sender by return E-mail and then destroy it.
Wed June 4
Last night was surreal. I finished round one of hard 4-5 days of chemo. I had Benadryl to help sleep , but probably had to get up 15 times to pee. It was very difficult to control bladder long enough to get it done and get back to bed...only to fall asleep and do it all over again. I peed almost 6 liters between 7 pm and 6 am. Doc came in and said they will stop giving me fluids. When admitted I was in renal failure, now kidneys and liver are working again.
Doc will order another blood transfusion to give more energy. I promised to be like Lance Armstrong and get infusion and get on their stationary bike, but it didn't happen. I am also scheduled for more platelets today.
I was sort of out of it yesterday afternoon/evening and couldn't answer simple questions about who had come to visit me.
Thanks Brad! A wonderful, long-term friend from church came by yesterday. After an hour I asked him to go get me a Jersey Mike's sandwhich. I ate more than 1/2, which was most I've been able to eat at a meal in a week.
This morning I was very hungry and ordered bowls of cereal and two juices.
I had great nurse last night. Thank you Kate. She took very good care of me. I had headache and they are still concerned about internal bleeding. She told me to look into her eyes, then shined a flash light around and asked a ton of questions about bowel movements, badly swollen feet, quivering legs, etc. A lot of sustenance, but not nearly as much fun as looking into my wife's eyes. ;)
Todd, Gateway Church's Men's Paster, Mark, a good business friend, brought along another Christian brother, Gerald, dropped by. 10 minutes later my ultra running buddy, Matt, who is a hoot, and was a hospital Chaplin for 14 years, popped in. It was really, really a good visit. Thank you.
So, chemo is done and I'm just under lock down for a week till my immune system recovers. White blood count was down from 92,000 to 11,000 today (close to normal).
Sent from my iPhone
______________________________________________________
This E-mail and any attachment contains information which is private and confidential and is intended for the addressee only. If you are not an addressee, you are not authorized to read, copy or use the E-mail or any attachment. If you have received this E-mail in error, please notify the sender by return E-mail and then destroy it.
Tuesday, June 3, 2014
June 3, 2014
Leukemia notes:
June 3- hear I am getting 'sledge hammer chemo'; apparently I was very sick upon admittance. Equate very low/bad numbers with very aggressive leukemia.
However, I've had few side effects and am muscled up and am such good shape and health (otherwise) that is seem to be taking chemo well
Hemoglobin is down, which sounds typical for so much chemo.
White blood count should be 4-11 (1,000s). I arrived with 92,000. It was 36 yesterday and 27 today.
Sounds like they may do another bone marrow biopsy soon to judge effectiveness of chemo? Here's the thing. There really isn't a relationship between my numbers improving and handing chemo. Well, if I wasn't so strong, they couldn't give me as much chemo. The key is reducing leukemia in bone marrow. They may check again in a week to see if I am making progress.
How long do I stay? 3 weeks from first chemo, say go home maybe June 21, depending totally on how effective it worked.
Life expectancy? There are a few other cases. If chemo doesn't reach total remission, we'll know within the first year and life expectancy would be about two years. On the other hand, if bone marrow biopsy shows great results, I can do much better.
Pathologist - my cancer cells are not all not ALL, but very similar. They call it Follicular Lymphoma with blastoid transformation. They will treat it the same.
Do bone marrow year later, maybe.
Immune system will be low for two weeks...first round. Second, my numbers will be better, so in hospital for 3-5 days. 4-8 rounds of chemo, depending on transplant.
Side affects may begin days 7-8 and last a couple weeks.
No studies. Few other cases. Some with good outcomes. No randomized studies. Chromosomes- no double hits . I do have marker for myc, more aggressive marker.
Get cured and get over it with first two years years, or probably die. Should know by end of first year.
June 3- hear I am getting 'sledge hammer chemo'; apparently I was very sick upon admittance. Equate very low/bad numbers with very aggressive leukemia.
However, I've had few side effects and am muscled up and am such good shape and health (otherwise) that is seem to be taking chemo well
Hemoglobin is down, which sounds typical for so much chemo.
White blood count should be 4-11 (1,000s). I arrived with 92,000. It was 36 yesterday and 27 today.
Sounds like they may do another bone marrow biopsy soon to judge effectiveness of chemo? Here's the thing. There really isn't a relationship between my numbers improving and handing chemo. Well, if I wasn't so strong, they couldn't give me as much chemo. The key is reducing leukemia in bone marrow. They may check again in a week to see if I am making progress.
How long do I stay? 3 weeks from first chemo, say go home maybe June 21, depending totally on how effective it worked.
Life expectancy? There are a few other cases. If chemo doesn't reach total remission, we'll know within the first year and life expectancy would be about two years. On the other hand, if bone marrow biopsy shows great results, I can do much better.
Pathologist - my cancer cells are not all not ALL, but very similar. They call it Follicular Lymphoma with blastoid transformation. They will treat it the same.
Do bone marrow year later, maybe.
Immune system will be low for two weeks...first round. Second, my numbers will be better, so in hospital for 3-5 days. 4-8 rounds of chemo, depending on transplant.
Side affects may begin days 7-8 and last a couple weeks.
No studies. Few other cases. Some with good outcomes. No randomized studies. Chromosomes- no double hits . I do have marker for myc, more aggressive marker.
Get cured and get over it with first two years years, or probably die. Should know by end of first year.
Monday, June 2, 2014
June 2, 2014
I had a much better night's sleep last night. I'm in middle of day three chemo. From Wed evening I was given high doses of steroids and constant fluids. On Saturday I received Rituxan, the first -chemo. I've had two bouts of throwing up, but much less than running ultras. I had a little shortness of breath and dealt with heartburn, but generally had few side effects.- Yesterday, I got Cytoxan infusion for three hours and then did it again 12 hours later. We repeated the process again today. Today's minor side affect was urination urgency issues. I didn't have much control and wet my pants before I could get everything pointed into the bottle (they measure everything I do here). I've had much better success lately. They wanted me to move around more today, so I got on the recumbent bike. I asked the nurse what the PR was for it, but she didn't know what I was talking about. ;). So I just tooled around for 30 minutes. Funny, someone pulled down my window blinds yesterday and it fell off the wall. Two nice guys came from maintenance and put them back up. Unfortunately, they fell down again. I'm beginning to look like a hoodlum. They won't let me shave for fear of bleeding. Apparently, my white blood cell count has dropped from something like 92,000 to below 40,000. My platelets came in real low at 8 (1,000s). I got five IV bags and increased up to 32, but I am now back to 8. Apparently, chemo eats platelets and they are giving me lots of chemo. As one nurse put it, "You're pretty toxic right now." Bottom line I feel better.
I had a much better night's sleep last night. I'm in middle of day three chemo. From Wed evening I was given high doses of steroids and constant fluids. On Saturday I received Rituxan, the first -chemo. I've had two bouts of throwing up, but much less than running ultras. I had a little shortness of breath and dealt with heartburn, but generally had few side effects.- Yesterday, I got Cytoxan infusion for three hours and then did it again 12 hours later. We repeated the process again today. Today's minor side affect was urination urgency issues. I didn't have much control and wet my pants before I could get everything pointed into the bottle (they measure everything I do here). I've had much better success lately. They wanted me to move around more today, so I got on the recumbent bike. I asked the nurse what the PR was for it, but she didn't know what I was talking about. ;). So I just tooled around for 30 minutes. Funny, someone pulled down my window blinds yesterday and it fell off the wall. Two nice guys came from maintenance and put them back up. Unfortunately, they fell down again. I'm beginning to look like a hoodlum. They won't let me shave for fear of bleeding. Apparently, my white blood cell count has dropped from something like 92,000 to below 40,000. My platelets came in real low at 8 (1,000s). I got five IV bags and increased up to 32, but I am now back to 8. Apparently, chemo eats platelets and they are giving me lots of chemo. As one nurse put it, "You're pretty toxic right now." Bottom line I feel better.
Sunday, June 1, 2014
Acute Lymphoblastic Leukemia
It has been about 7 months since the XC bike ride. Since the ride, I experienced a "spontaneous" regression, which means that my largest lymphoma tumor disappeared without drugs. This was unusual good news.
However, I began feeling sick three weeks ago: chills, nausea, weight loss, fatigue, bleeding, etc. I then developed a upper respiratory and sinus infection, although I knew it was just a symptom. So I moved my oncologist appointment up a couple months.
My blood work showed a dramatic reversal: my LDH rose from a steady 182 to 6,650. My white blood cells were 10x too high. My platelets, which should have been 200-300 were 8 (in thousands). My kidneys and my liver were shutting down and I had internal bleeding. My oncologist took one look at me and immediately had me admitted to UT Southwestern St. Paul's Hospital. Just for precaution, I can't have flowers.
Apparently, my Follicular Non-Hodgkin's Lymphoma transformed into Acute Lymphoblastic Leukemia, which is much more serious, aggressive (meaning, it will kill you in three months if left alone). An analysis of individual bone marrow cells shows the evidence of both lymphoma and leukemia in the same cell, which indicates that it's a transformation rather than a new cancer dropping on top of the old one. Comparing my two bone marrow biopsies/aspirations, the first was three years ago, the presence of cancer (now leukemia) increased from 5% to 90%. All I know is that it's not a good sign to have 'blastic' embedded in the title of my disease.
I started chemo yesterday since this is so dangerous. I dodged one risk factor: the Philadelphia gene, but tripped over a couple others. The cure rate is maybe 30% and survival rate about 60% (hard to explain difference). Generally speaking, life expectancy is far lower. I probably won't return to work; time for retirement. This kind of transformation is especially rare. They have never seen it at either UT Southwestern or the the Mayo Clinic. Live or die, I will be the subject of many case studies in medical journal articles.
My wife, Sherry, who has Multiple Sclerosis, has arranged for someone to stay with her while I am here in hospital for at least 30 days.
God is a good God.
Subscribe to:
Posts (Atom)