It is time for an update. One of the cancer center workers told me that "treating leukemia is a chaotic and unpredictable process." My experience confirms that opinion. We have been unable to make a plan and then execute it. Rather, it seems like everything is a reaction. You can imagine how much I like that!
I am still at home and feeling tolerably well. Have little energy, feel weak, but have a good appetite and can walk for 20 minutes or so. Our lives consist of home and doctor's offices and hospitals. This week it has been 4 days out of five with 3 trips to Denver. Kathleen is my cook, errand runner, and chauffeur. She is doing well, totally committed to this process but feeling a bit tired. Still require isolation for fear of infection (i.e. already we have Swine flu at CU). My body does not create enough blood cells on its own for me to be healthy, even almost 8 weeks after the major chemo. White count (infection fighters) is about 30% of the low end of the normal range. Red count is supplemented by blood transfusions, had 2 units yesterday at the hospital. The reason for this failure is not totally evident but probably due to the continuing leukemia.
Last week I completed five days of "chemo" in Boulder aimed at suppressing the L. until the lung infection can be treated. It wiped me out some but not too badly. Tuesday I had a bronchoscopy (examination of my lungs from the inside). Because of the location of the "spot" (very top of one lung) the scope could neither see nor biopsy the area. Instead, they wash it with saline, gather it up, and then grow cultures to see if anything can be identified. Total results take up to 8 weeks! You may well ask "what good is this test?"
We will do a repeat CT scan of the chest next Wednesday hoping for a reduction in size of the spot. My next meeting with the transplant doc is 9/12 with the Boulder doc watching over me in the interim. Don’t expect any real updates until after 9/12.
Thanks for you support and your prayers. Just below this post are some instructions which simplify the "commenting" process. We love to hear from you.
Gordon
Saturday, August 29, 2009
Saturday, August 15, 2009
Instructions: How to Post a Comment
To Post A Comment:
Click on "Comments" at the bottom of the post
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Under "Choose an identity" select the circle next to "Anonymous"
Click "Publish your comment"
Click on "Comments" at the bottom of the post
Under "Leave your Comment" write your comment and sign your name
Under "Choose an identity" select the circle next to "Anonymous"
Click "Publish your comment"
From Gordon
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.
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.
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
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