15 August 2009
Dear Friends (written by Gordon)
As of Saturday I am feeling fairly well, no energy, but OK to tackle this note. We have been going to Denver 3 times per week (5 times last week) so it is great to have a day without doctors. They are a wonderful resource but each trip takes its toll.
On 8/11 I underwent many tests at the hospital in preparation for an end of August bone marrow transplant. All except one test came out great. Just yesterday we found that unfortunately a CAT scan showed a spot on my lung which is almost certainly a fungal infection. Tests are underway to identify the culprit so we can best treat it. Given my low white counts it is very unlikely that it can be cured right now so the goal is to either contain or shrink it. It must be treated for at least four weeks.
Because of the infection, the transplant has been postponed for 5-6 weeks. Given that there is still leukemia active in my marrow, we are planning on 5 days of outpatient chemo, hopefully in Boulder, to try and inhibit the leukemia while we fight the infection.
Obviously this is a major setback in the overall game plan. I will spare you the gruesome numbers but it will be a horse race to see if I can still qualify for a transplant. Infection must be controlled and leukemia cells must be within the limits.
My situation looks a bit tenuous but we are forging on. I am so grateful for my almost idyllic life. I am so blessed with friends, neighbors, business associates and a wonderful family. I can’t imagine how people without such support face such issues as now confronts us.
We appreciate your prayers, emails, cards, good thoughts and we will try and keep you posted on what is going on at least weekly.
I have asked Carrie to add something to the blog to explain how to make comments. Some have mentioned trouble in doing that.
Saturday, August 15, 2009
Monday, August 10, 2009
Plans for the BMT
Since dad has left the hospital, my parents have driven to Denver every Monday, Wednesday and Friday for blood tests, blood transfusions, etc. These appointments take a minimum of 4 hours and can last all day. In addition to the regular M, W, F appointments this week - dad is scheduled for a series of pre-BMT tests beginning on Tuesday, 8/11. Since dad is still recovering from induction and does not have his energy all back, these Denver visits are exhausting.
Dad's blood counts are still not going up so he is still at risk for infection. As a result my mom takes great care to plan for and prepare 3 meals a day that are healthy, soft to chew/swallow (for his mouth sores), and safe. She has probably gone to the grocery store more times in the past month that she has in the past 5 years! (My dad is the regular grocery shopper.)
The doctors have a donor lined up for dad and there is a tentative transplant date of 8/27. On 8/21 dad goes into the hospital to "prep" for the transplant with chemo and radiation. There are three levels of prep for the transplant: young people, mid range, and mini (for older people). Because dad's disease is not in a full remission, he will have to endure the mid range of chemo/radiation.
Sara is out from NYC with the kids to see everyone, especially grandpa. It is always good to be together as a family.
Dad's blood counts are still not going up so he is still at risk for infection. As a result my mom takes great care to plan for and prepare 3 meals a day that are healthy, soft to chew/swallow (for his mouth sores), and safe. She has probably gone to the grocery store more times in the past month that she has in the past 5 years! (My dad is the regular grocery shopper.)
The doctors have a donor lined up for dad and there is a tentative transplant date of 8/27. On 8/21 dad goes into the hospital to "prep" for the transplant with chemo and radiation. There are three levels of prep for the transplant: young people, mid range, and mini (for older people). Because dad's disease is not in a full remission, he will have to endure the mid range of chemo/radiation.
Sara is out from NYC with the kids to see everyone, especially grandpa. It is always good to be together as a family.
Thursday, August 6, 2009
Moving on to transplant!
After more time has passed the doctors think dad can move right to a bone marrow transplant! Here is an email he sent his children on Thursday 8/6.
Kids:
A long day. Left at 8:40am and returned about 5:30pm after two units of blood at PSL.
Talked to Dr. Maris. Current plan is to try and "fast track" a transplant. They are working on a donor and all the logistics. Could be in as little as three weeks. Back into the hospital for me in about two weeks assuming that I can maintain the status quo. Chances of a 5 year survival are 20-30%. I did not ask what the chances were of surviving the transplant. If we do nothing more, 100% chance of death. He did say that it may take 3-6 months which was longer than I had expected. Maybe I should have just played golf for another month?
He explained a bit about the marrow results. Apparently the "cellularity," a term I don't quite understand but I think that it means the normal cells in the marrow, had increased relative to the leukemia cells, therefore the relative blast count was better. Mouth sores look much improved.
Blood counts were discouraging. White blood count down to 700 from 900. No improvement in neutrophils. Red and platelets about even. My poor marrow has just had too much chemo (my opinion). He gave me a shot of neupogen to try and stimulate cell growth. He said that it does not tend to affect the leukemia much.
Felt really weak and lightheaded starting yesterday. Apparently my blood pressure drops when I sit or stand up which is sign of "lack of hydration" in the vascular system. Apparently this can happen even if I am drinking sufficiently. Told to increase the Gatorade and may have to go to IVs of water at the visits.
Still not feeling any positive effects from the blood. There is always tomorrow!
Dad
Kids:
A long day. Left at 8:40am and returned about 5:30pm after two units of blood at PSL.
Talked to Dr. Maris. Current plan is to try and "fast track" a transplant. They are working on a donor and all the logistics. Could be in as little as three weeks. Back into the hospital for me in about two weeks assuming that I can maintain the status quo. Chances of a 5 year survival are 20-30%. I did not ask what the chances were of surviving the transplant. If we do nothing more, 100% chance of death. He did say that it may take 3-6 months which was longer than I had expected. Maybe I should have just played golf for another month?
He explained a bit about the marrow results. Apparently the "cellularity," a term I don't quite understand but I think that it means the normal cells in the marrow, had increased relative to the leukemia cells, therefore the relative blast count was better. Mouth sores look much improved.
Blood counts were discouraging. White blood count down to 700 from 900. No improvement in neutrophils. Red and platelets about even. My poor marrow has just had too much chemo (my opinion). He gave me a shot of neupogen to try and stimulate cell growth. He said that it does not tend to affect the leukemia much.
Felt really weak and lightheaded starting yesterday. Apparently my blood pressure drops when I sit or stand up which is sign of "lack of hydration" in the vascular system. Apparently this can happen even if I am drinking sufficiently. Told to increase the Gatorade and may have to go to IVs of water at the visits.
Still not feeling any positive effects from the blood. There is always tomorrow!
Dad
Monday, July 27, 2009
Week ONEderful now on to Week TWOmuch fun...
Dad is finishing up week 1 of recovery at home. He still has very low energy and can't shake the mouth sores. According to the doctors, until the white blood cells come back, the body can't fight the virus which is causing the sores so as with everything else, all depends on the white blood cells. His platelettes, "clotting cells", have started to increase. He makes the trek to Denver to the hospital every other day and the trip generally takes at least 5 hours. I guess he and mom have redefined the "perfect date" [for masochists that is].
Monday he was dehydrated so they kept him for a couple of hours to pump fluids. Much to everyone's chagrin he has lost 5 pounds in a week so now he has mandatory milk shakes before going to bed. Who knows, maybe leukemia will be the next fad diet - I wouldn't be surprised.
Mom has been to the grocery store and spent hours shopping for and preparing recipes that are soft enough for dad to chew but calorically dense and nutritious. She is adament that he not eat anything prepared by someone else as she doesn't want to risk anything that could cause infection. As mom says " you know i must really love you if i am willing to go to the store so many times in a week".
Thursday he came out and announced the he was "going....... downstairs to watch some golf". At first I thought he said he was going to play some golf and was quite taken aback. Saturday was Brig's first birthday and the party was in Denver. Rand, who has awoken at 4:45 am to successfully navigate a 75 mile/6 hour bikeride, came over and stayed with Dad while we went to the party. Who knows, maybe they just napped together, but it was again a testimony of the selflessness of Rand.
So all in all we don't have much to report. The plan, which seems to change with each new doctor we talk to, is to wait until Dad is strong enough to begin induction/chemo again. Of course if we get our miracle he could go straight to the bone marrow transplant.
Thanks again for all of the prayers/emails/homemade bread and offers to help. We couldn't do this without our friends and family.
Monday he was dehydrated so they kept him for a couple of hours to pump fluids. Much to everyone's chagrin he has lost 5 pounds in a week so now he has mandatory milk shakes before going to bed. Who knows, maybe leukemia will be the next fad diet - I wouldn't be surprised.
Mom has been to the grocery store and spent hours shopping for and preparing recipes that are soft enough for dad to chew but calorically dense and nutritious. She is adament that he not eat anything prepared by someone else as she doesn't want to risk anything that could cause infection. As mom says " you know i must really love you if i am willing to go to the store so many times in a week".
Thursday he came out and announced the he was "going....... downstairs to watch some golf". At first I thought he said he was going to play some golf and was quite taken aback. Saturday was Brig's first birthday and the party was in Denver. Rand, who has awoken at 4:45 am to successfully navigate a 75 mile/6 hour bikeride, came over and stayed with Dad while we went to the party. Who knows, maybe they just napped together, but it was again a testimony of the selflessness of Rand.
So all in all we don't have much to report. The plan, which seems to change with each new doctor we talk to, is to wait until Dad is strong enough to begin induction/chemo again. Of course if we get our miracle he could go straight to the bone marrow transplant.
Thanks again for all of the prayers/emails/homemade bread and offers to help. We couldn't do this without our friends and family.
Sunday, July 19, 2009
Not done yet...
The 2nd bone marrow test showed that the percentage of leukemia cells in dad's body has stayed about the same and has actually gone up a little bit (8% to 9%). As a result, dad is not yet eligible for the bone marrow transplant. In a week dad's ailments have eased up quite a bit. His mouth sores are healing and he is sleeping better at night. However, his body is not yet strong enough for a 2nd round of chemo. The Dr. suggested dad go home for a few weeks to give his body time to heal and give him a break from the hospital. Then in 2-3 weeks he will return to the hospital for "re-induction" (a 2nd round of chemo).
Dad still has virtually no immune system and can not have any non-family visitors in the house. We are excited he will be able to see the grand kids (even if it is from afar) as children under the age of 18 were not permitted in the hospital. Also perhaps mom and dad can now celebrate their 45th wedding anniversary with style! Their anniversary fell in the middle of round 1 of chemo (similar to their 43rd wedding anniversary). Congrats mom and dad - we love you both so much!
Dad still has virtually no immune system and can not have any non-family visitors in the house. We are excited he will be able to see the grand kids (even if it is from afar) as children under the age of 18 were not permitted in the hospital. Also perhaps mom and dad can now celebrate their 45th wedding anniversary with style! Their anniversary fell in the middle of round 1 of chemo (similar to their 43rd wedding anniversary). Congrats mom and dad - we love you both so much!
Monday, July 13, 2009
Induction
Dad has been in the hospital 22 days. The first 2 days he was getting checked in. The next 5 days he received chemotherapy. The last 15 days we have been waiting to see if the chemo has worked, and have watched him feel the affects of the chemo.
Thus far side affects include:
-extensive mouth and throat sores (similar to strep). So far this has been the worst part and is preventing dad from eating and talking much
-constant headaches
-shakes
-occasional temperature (not as bad as last time)
-lack of energy / weak
-infection in his leg they believe might be a fungus
-water retention
-hair loss
-insomnia (compounded by the fact the nurses have to check his vitals at midnight and 4am each night)
-and a host of other daily changing ailments
Luckily after 4 incidents, the fainting seems to have stopped (and with it, the bruises all over his poor body). Hallelujah!
July 8th the Dr. gave dad a bone marrow test to asses the effectiveness of the chemotherapy. July 9th we found out that while the chemo appears to be working, it hasn't killed enough leukemia cells to make dad eligible for a bone marrow transplant. When dad went into the hospital 30-40% of his cells were infected with leukemia. The marrow test showed the chemo has reduced this number to 8%. While the Drs. think this is an excellent/remarkable response to the chemo (there was a chance the leukemia would have completely resisted the chemo and gained strength), we must hit 5% or below to be considered "in remission." This left dad with a choice to make:
1. Do nothing for a week. The chemo may still be killing the leukemia cells. A new bone marrow test in 7 days may show the number has dropped below 5%.
2. Get blasted with another round of chemo immediately to try and kill off the remaining 8%.
Given that his body is still in midst of feeling the affects of the chemo, getting hit with another round would make his side affects much worse since his body hasn't had time to heal. Also, it would take 2-3 weeks longer to recover. The Dr. also said that the bone marrow test was given 1 week earlier than normal since this is a "medical study." So there is the chance his leukemia count will continue to drop with no new chemo.
So, we decided to wait and pray (please join us!) that the first round of chemo is still killing the leukemia cells and in a week his % will drop below 5%. If in a week his percentage has stayed the same or increased he will have to go through "re-induction," or get blasted with a 2nd round of chemo.
So we are back to the waiting game which seems to be a never ending theme.
Dad has started listening to books on CD which provides a nice diversion. He also has at least 2 family visitors per day whether he wants them or not. :) However, visitors are limited to immediate family only given he has no immune system and a cold or infection could be lethal.
Thanks for all the emails, letters, cards, blog comments, fasting, and prayers. We feel your concern and love and gain strength from it.
Thus far side affects include:
-extensive mouth and throat sores (similar to strep). So far this has been the worst part and is preventing dad from eating and talking much
-constant headaches
-shakes
-occasional temperature (not as bad as last time)
-lack of energy / weak
-infection in his leg they believe might be a fungus
-water retention
-hair loss
-insomnia (compounded by the fact the nurses have to check his vitals at midnight and 4am each night)
-and a host of other daily changing ailments
Luckily after 4 incidents, the fainting seems to have stopped (and with it, the bruises all over his poor body). Hallelujah!
July 8th the Dr. gave dad a bone marrow test to asses the effectiveness of the chemotherapy. July 9th we found out that while the chemo appears to be working, it hasn't killed enough leukemia cells to make dad eligible for a bone marrow transplant. When dad went into the hospital 30-40% of his cells were infected with leukemia. The marrow test showed the chemo has reduced this number to 8%. While the Drs. think this is an excellent/remarkable response to the chemo (there was a chance the leukemia would have completely resisted the chemo and gained strength), we must hit 5% or below to be considered "in remission." This left dad with a choice to make:
1. Do nothing for a week. The chemo may still be killing the leukemia cells. A new bone marrow test in 7 days may show the number has dropped below 5%.
2. Get blasted with another round of chemo immediately to try and kill off the remaining 8%.
Given that his body is still in midst of feeling the affects of the chemo, getting hit with another round would make his side affects much worse since his body hasn't had time to heal. Also, it would take 2-3 weeks longer to recover. The Dr. also said that the bone marrow test was given 1 week earlier than normal since this is a "medical study." So there is the chance his leukemia count will continue to drop with no new chemo.
So, we decided to wait and pray (please join us!) that the first round of chemo is still killing the leukemia cells and in a week his % will drop below 5%. If in a week his percentage has stayed the same or increased he will have to go through "re-induction," or get blasted with a 2nd round of chemo.
So we are back to the waiting game which seems to be a never ending theme.
Dad has started listening to books on CD which provides a nice diversion. He also has at least 2 family visitors per day whether he wants them or not. :) However, visitors are limited to immediate family only given he has no immune system and a cold or infection could be lethal.
Thanks for all the emails, letters, cards, blog comments, fasting, and prayers. We feel your concern and love and gain strength from it.
Sunday, July 5, 2009
Week 2 of ????
Well the good news is, and I am being very liberal with the definition of "good", TGL survived another week, but not without a bit of drama. The phrase "not for the faint of heart" has a new meaning for the Lewis family.
Dad finished chemo a week ago Saturday and has been "hanging out" waiting for his white and red blood cells to hit rock bottom. Not exactly what one waits with baited breath for or puts on a Xmas list. The nausea has continued but generally just in the mornings until he can get some food in his system.
The following string of emails explains what happened:
Jul 1, 2009, at 10:44 am, Lewis, Carrie (Carrie) wrote:
Dad just called. He blacked out and fell down twice again this morning. Turns out when he stands up his blood pressure drops and then he blacks out. They are moving him to a new room so they can monitor his heart more closely. His new room number is 3307. He doesn’t know what his new phone number will be yet.
Wed Jul 01 12:06 2009 Sara wrote:
I just read this. Is someone there now? Why is this happening? Is it the chemo, or the leukemia, or something else. Has he seen the dr. today?
Jul 1, 2009 at 12:15 pm Rand wrote:
I'm here. They don't know why. He saw Dr today. They believe it is because he is "dehydrated". It isn't really dehydration, but when the body has cancer and is exposed to chemo the tissues/vessels lose their ability to hold/absorb/retain water. This could cause fainting. They have moved him to watch his heart for 24 hours. He is wired to sensors. They noticed his BP dropped when he stands compared to laying/sitting. He feels OK and wasn't hurt on the falls. They won't let him get out of bed w/o a nurse. His neurtophils are at zero and the counts are falling. I assume he'll have a fever before long. This means the chemo is working to wipe out the marrow.
He apologized to me that his timing will mess up our vacation. Always thinking of others.
They monitored his heart for 24 hours and then he moved back up to his original digs. Despite his total lack of appetite; he still orders and eats each meal. Thursday night I was there for dinner. He ordered 1/2 egg salad sandwich on whole wheat bread, sides of mac 'n cheese and fried potatoes, a strawberry ENSURE and a chocolate chip cookie (which was for me). He ate the sandwich, took a few bites of the sides and then opened the ENSURE. He said mattera factly "this wasn't what I ordered" since the ENSURE was chocolate. Then I mentioned "and the sandwich was on white instead of whole wheat". He hadn't noticed or complained.
In other news
· Dave figured out that through his laptop he can access TGL's home cable from anywhere. His only concern is changing the channel while TGL is watching another.
· Crosby had a physical and is in the 80th percentile for height. We couldn't be prouder.
· Thursday night after dinner, Carrie put on the Lion King soundtrack and Brig, somewhat awestruck, witnessed Kathleen, yah yah, carrie and dave dance around like 14 year olds at their first Stake Dance. [michael jackson eat your heart out].
· TGL is now sporting not one but THREE different styles of pj bottoms.
Again, THANK YOU all so much for your prayers, emails, "blog comments" and friendship.
Dad finished chemo a week ago Saturday and has been "hanging out" waiting for his white and red blood cells to hit rock bottom. Not exactly what one waits with baited breath for or puts on a Xmas list. The nausea has continued but generally just in the mornings until he can get some food in his system.
The following string of emails explains what happened:
Jul 1, 2009, at 10:44 am, Lewis, Carrie (Carrie) wrote:
Dad just called. He blacked out and fell down twice again this morning. Turns out when he stands up his blood pressure drops and then he blacks out. They are moving him to a new room so they can monitor his heart more closely. His new room number is 3307. He doesn’t know what his new phone number will be yet.
Wed Jul 01 12:06 2009 Sara wrote:
I just read this. Is someone there now? Why is this happening? Is it the chemo, or the leukemia, or something else. Has he seen the dr. today?
Jul 1, 2009 at 12:15 pm Rand wrote:
I'm here. They don't know why. He saw Dr today. They believe it is because he is "dehydrated". It isn't really dehydration, but when the body has cancer and is exposed to chemo the tissues/vessels lose their ability to hold/absorb/retain water. This could cause fainting. They have moved him to watch his heart for 24 hours. He is wired to sensors. They noticed his BP dropped when he stands compared to laying/sitting. He feels OK and wasn't hurt on the falls. They won't let him get out of bed w/o a nurse. His neurtophils are at zero and the counts are falling. I assume he'll have a fever before long. This means the chemo is working to wipe out the marrow.
He apologized to me that his timing will mess up our vacation. Always thinking of others.
They monitored his heart for 24 hours and then he moved back up to his original digs. Despite his total lack of appetite; he still orders and eats each meal. Thursday night I was there for dinner. He ordered 1/2 egg salad sandwich on whole wheat bread, sides of mac 'n cheese and fried potatoes, a strawberry ENSURE and a chocolate chip cookie (which was for me). He ate the sandwich, took a few bites of the sides and then opened the ENSURE. He said mattera factly "this wasn't what I ordered" since the ENSURE was chocolate. Then I mentioned "and the sandwich was on white instead of whole wheat". He hadn't noticed or complained.
In other news
· Dave figured out that through his laptop he can access TGL's home cable from anywhere. His only concern is changing the channel while TGL is watching another.
· Crosby had a physical and is in the 80th percentile for height. We couldn't be prouder.
· Thursday night after dinner, Carrie put on the Lion King soundtrack and Brig, somewhat awestruck, witnessed Kathleen, yah yah, carrie and dave dance around like 14 year olds at their first Stake Dance. [michael jackson eat your heart out].
· TGL is now sporting not one but THREE different styles of pj bottoms.
Again, THANK YOU all so much for your prayers, emails, "blog comments" and friendship.
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