Is it just me or does it seem ironic that a man who sits at the beach in a wind suit, hat, and tennis shoes, has spent his life slathered in SPF 60 sunscreen and gardens in a long-sleeved shirts and jeans is peeling worse than a teen who laid out with Crisco on tinfoil and got burned? They say a picture is worth a thousand words but in this case it is worth 1,000 layers of skin. The photos, though timely for the Halloween season, give some brevity to the week that TGL has endured. Dare I mention Job?
Generally, our experience with induction has been 5-7 days of chemo with the effects of fatigue, fever, mouth sores, etc. hitting 7-10 days later; but, such was not the case with the chemo drug dad received this go around. The docs warned that one of the side effects was "hand, foot syndrome"; however, since the drug affects everyone differently we hoped for the best.
After his first chemo session on Monday 10/5, he experienced nausea and a blood clot in his arm where the pick line was. They moved the line to the right arm and put him on blood thinner to treat the clot. From then things went downhill faster than Thomas the Tank engine without brakes on the Matterhorn. By Thursday 10/8 dad was carrying 25+ lbs of extra fluid and had a rash all over his body. If he tried to stand he lost his balance as his small frame was completely unfamiliar with the extra weight. His hands and feet were so swollen and red that he could barely eat - but being the model patient - he still tried.
Mom called Sunday morning and couldn't get a hold of him. Needless to say, she was upset and headed down to the hospital. She went to his room on the 4th floor and was informed he had been moved to ICU. Sunday - Wednesday dad experienced hallucinations and was disoriented. He doesn't remember anything from Monday afternoon to Wednesday. When I went to visit on Thursday he described a dream which in my opinion was his experience for those scary hours. At the end of the dream after unsuccessfully trying to reach mom and rand on their phones, Rand came and picked him up - THANKS RAND!
He didn't sleep more than an hour between Sunday night and Thursday 10/15 and they did not administer the final chemo in order to stabilize him. He has been on oxygen and has had multiple blood transfusions per day. The hallucinations are gone and now he is completely wiped out. Ordering Dinner seems like major task for him. They wrap his hands and feet 3 times a day and his entire body is peeling. He has huge blisters, [as shown in the picture] and still has a rash all over his legs. Basically, the chemo burned his body from the inside out - NICE!!!
They believe that the combination of the nausea, pain drugs, anti-biotics and chemo caused dad's hallucinations and lack of orientation. The doctor told Rand these types of side effects are “normal” but not at the level dad experienced. Dad has had 24 hour care in the room to keep him safe and the caregivers at the hospital have been very impressive, patient and loving. One of them even trained to be an Olympic speed skater - just a factoid gleaned from Yah Yah who probably peppers the nurses/techs too much with inquiries. We are SO very grateful for the care dad is receiving. Not all angels are in heaven!!!
Monday, October 19, 2009
Saturday, October 10, 2009
This has been a tough round
Dad is almost done with the chemo, but it has taken a toll. Thus far side affects include:
Head to toe skin rash
Severe bloating - he is carrying about 20 lbs of extra water
Blood clot in his right arm
Exhaustion - he hasn't been out of bed for several days
Constant temperature
Headache
Nausea
He is hanging in there, but it has been rough. Once the chemo is done we wait for him to recover, and wait to see if it worked. Stay tuned.
Head to toe skin rash
Severe bloating - he is carrying about 20 lbs of extra water
Blood clot in his right arm
Exhaustion - he hasn't been out of bed for several days
Constant temperature
Headache
Nausea
He is hanging in there, but it has been rough. Once the chemo is done we wait for him to recover, and wait to see if it worked. Stay tuned.
Friday, October 2, 2009
10-2-09 Update (by Gordon)
We have completed the various tests required to move forward with a bone marrow transplant.
The lung infection seems to have responded to the therapy and is not now deemed to be a problem.
Unfortunately, the bone marrow biopsy did not follow suit. The degree of leukemia cells in my marrow has approximately doubled (13% to 24%) and there are circulating leukemia cells in my bloodstream. These levels do NOT support moving ahead with the transplant plan.
The new plan has me entering the Denver hospital (PSL) on Monday morning for another round of induction. Chemo lasts for about one week and the expected hospital stay is about 4 weeks. A different drug will be used in hopes of finding something that will challenge the drug resistant leukemia. If we can drive the leukemia back into "remission," the transplant is still a possibility.
Have felt weaker and more breathless the last week. Not looking forward to next week but we are committed to play the string out and see what happens.
Thanks for your many cards, pies, website comments, emails, and prayers. I will rely on my daughters to keep the post up to date but there probably won’t be much to report for at least three weeks.
Gordon
The lung infection seems to have responded to the therapy and is not now deemed to be a problem.
Unfortunately, the bone marrow biopsy did not follow suit. The degree of leukemia cells in my marrow has approximately doubled (13% to 24%) and there are circulating leukemia cells in my bloodstream. These levels do NOT support moving ahead with the transplant plan.
The new plan has me entering the Denver hospital (PSL) on Monday morning for another round of induction. Chemo lasts for about one week and the expected hospital stay is about 4 weeks. A different drug will be used in hopes of finding something that will challenge the drug resistant leukemia. If we can drive the leukemia back into "remission," the transplant is still a possibility.
Have felt weaker and more breathless the last week. Not looking forward to next week but we are committed to play the string out and see what happens.
Thanks for your many cards, pies, website comments, emails, and prayers. I will rely on my daughters to keep the post up to date but there probably won’t be much to report for at least three weeks.
Gordon
Sunday, September 27, 2009
Post by Laura (uploaded by Sara)
My sister Sara the other day was rather overwhelmed with being a mom of three, worried about dad, the rash and the spinal tap, and in general not in a good place when she heard a knock at her door. She opened the door and there was a package there with a baseball cap from Georgia and this note inside:
Sara:
Sending love from Georgia! So wish I had been with y'all the other night. I have been thinking about you so very much. I know some of the feelings you may be feeling- there are some things I know for certain the gospel is real and eternal families are freaking real. I know that the lewis family is amazing and together you'll be good and I know you have people in NY that love you so much. So when you wear the GA hat know there is someone in Georgia that REALLY cares.
Love to you.
LeeAnne Pope
Then last week mom and dad got a package in the mail from Washington D.C. and inside were two DVD's about golf and some candy with the following note:
Dear Gordon and Kathleen,
We have been thinking about you a lot lately. We are sorry you must endure this trial but admire the way you are going about it. You are in our prayers and we wish you the best in the coming weeks and months. We hope you will be blessed with strength and peace.
Love,
Brian and Amy Barker [travis' sister who has probably met dad once]
These are just a few of the many Golden Nuggets that the Lewis Family has received in the three longest months of our lives. The following are a few of my personal nuggets:
Tanner, Christian, Scout, Mason, Calder, Sydney, Crosby, and Brig who are hands down the best part of my life.
Weekly deliveries of fresh bread and homemade fruit pies for dad from Sister Rude Jude Maxfield.
Becca Bracy Knight and Pepper Sessions who are two of the funniest most delightful people on the planet. [even if Becca doesn't know what a spatula is]
Jim Strong's shaking shoulders as I sit behind him during Sacrament meeting each Sunday and witness the man of "very few words" giggle at whatever unexpected hilarious thing has happened during the meeting [today it was Millie Martindale saying she wouldn't wish her trials on anyone except maybe Osama Bin Laden]
My ASICS 2050 running shoes that are always willing/able to be laced up go as I pound the streets of Btown "running out" my stress, fears, and frustrations.
Travis Stratford for not only working long hours to provide a living so that Sara can stay home and be supermom but who is alone in NY as his family stays for weeks in Colorado. [I think a move is in order!]
Rhonda and Meg Hansen for bringing homemade goodies, teaching me about politics, knowing the primary songs [when I don't] and emailing me the opportunity to sign the declaration of independence.
Chris Martin and the music of COLDPLAY.
Bishop Dietz, dad's home teacher, who is always right behind me asking how dad is and how he can help.
Charles Langston for taking the time to gather "golf" reading for dad.
Comcast for making available every sporting event for TGL's viewing pleasure.
TGL himself who lies there hour after hour, visits doctor after doctor, swallows pill and pill and NEVER utters a word of complaint or frustration.
My Savior Jesus Christ who tolerates my constant mistakes, questions, and complaints and supports me and the family more than I know.
So this post is an official shout out to all of YOU who through your words, prayers, notes, thoughts, and acts make our days and lives better. WE love you.
Sara:
Sending love from Georgia! So wish I had been with y'all the other night. I have been thinking about you so very much. I know some of the feelings you may be feeling- there are some things I know for certain the gospel is real and eternal families are freaking real. I know that the lewis family is amazing and together you'll be good and I know you have people in NY that love you so much. So when you wear the GA hat know there is someone in Georgia that REALLY cares.
Love to you.
LeeAnne Pope
Then last week mom and dad got a package in the mail from Washington D.C. and inside were two DVD's about golf and some candy with the following note:
Dear Gordon and Kathleen,
We have been thinking about you a lot lately. We are sorry you must endure this trial but admire the way you are going about it. You are in our prayers and we wish you the best in the coming weeks and months. We hope you will be blessed with strength and peace.
Love,
Brian and Amy Barker [travis' sister who has probably met dad once]
These are just a few of the many Golden Nuggets that the Lewis Family has received in the three longest months of our lives. The following are a few of my personal nuggets:
Tanner, Christian, Scout, Mason, Calder, Sydney, Crosby, and Brig who are hands down the best part of my life.
Weekly deliveries of fresh bread and homemade fruit pies for dad from Sister Rude Jude Maxfield.
Becca Bracy Knight and Pepper Sessions who are two of the funniest most delightful people on the planet. [even if Becca doesn't know what a spatula is]
Jim Strong's shaking shoulders as I sit behind him during Sacrament meeting each Sunday and witness the man of "very few words" giggle at whatever unexpected hilarious thing has happened during the meeting [today it was Millie Martindale saying she wouldn't wish her trials on anyone except maybe Osama Bin Laden]
My ASICS 2050 running shoes that are always willing/able to be laced up go as I pound the streets of Btown "running out" my stress, fears, and frustrations.
Travis Stratford for not only working long hours to provide a living so that Sara can stay home and be supermom but who is alone in NY as his family stays for weeks in Colorado. [I think a move is in order!]
Rhonda and Meg Hansen for bringing homemade goodies, teaching me about politics, knowing the primary songs [when I don't] and emailing me the opportunity to sign the declaration of independence.
Chris Martin and the music of COLDPLAY.
Bishop Dietz, dad's home teacher, who is always right behind me asking how dad is and how he can help.
Charles Langston for taking the time to gather "golf" reading for dad.
Comcast for making available every sporting event for TGL's viewing pleasure.
TGL himself who lies there hour after hour, visits doctor after doctor, swallows pill and pill and NEVER utters a word of complaint or frustration.
My Savior Jesus Christ who tolerates my constant mistakes, questions, and complaints and supports me and the family more than I know.
So this post is an official shout out to all of YOU who through your words, prayers, notes, thoughts, and acts make our days and lives better. WE love you.
Monday, September 21, 2009
September 21, 2009 Update
I am past due on my promised update. That is because I keep waiting for something significant to occur that I could definitively report. Today is the day!
Last week I completed a second round of 5 days of chemo to suppress the leukemia. Not feeling so great today, kind of weak and shaky. I also have developed some skin rashes.
Since my last report we have completed two additional CT scans to monitor the infection in my lungs. The first, two weeks ago, seemed to show a slight worsening of the spots. The second, last Thursday, showed "improvement" (no one has quantified that for me) but I guess it doesn't matter as the doc said he was "pleased" with the progress..
Today we met with the transplant doc and we have a new plan. Transplant is scheduled for 10/15. I would enter the hospital on 10/9 and receive four days of preparatory chemo. I am really looking forward to that. This plan is contingent on passing some additional milestones.
The next CT scan of the lungs is 10/1 and the progress noted above must continue.
I will also have another bone marrow biopsy, probably on 9/28. I'm not so clear on what the "passing grade" here is to be. In addition I must have a spinal tap to look for leukemia in my central nervous system.
And, just to keep things interesting, I have noticed some skin rashes and itching the past few days and that needs to be evaluated by a dermatologist.
We continue to do well. Still need to walk more to build up my strength for the ordeal. Kathleen and I appreciate your thoughts, cards, prayers, and blog comments. You are a great support.
The final meeting with the transplant doctor is 10/5. We will try to update things shortly after that.
Gordon
Last week I completed a second round of 5 days of chemo to suppress the leukemia. Not feeling so great today, kind of weak and shaky. I also have developed some skin rashes.
Since my last report we have completed two additional CT scans to monitor the infection in my lungs. The first, two weeks ago, seemed to show a slight worsening of the spots. The second, last Thursday, showed "improvement" (no one has quantified that for me) but I guess it doesn't matter as the doc said he was "pleased" with the progress..
Today we met with the transplant doc and we have a new plan. Transplant is scheduled for 10/15. I would enter the hospital on 10/9 and receive four days of preparatory chemo. I am really looking forward to that. This plan is contingent on passing some additional milestones.
The next CT scan of the lungs is 10/1 and the progress noted above must continue.
I will also have another bone marrow biopsy, probably on 9/28. I'm not so clear on what the "passing grade" here is to be. In addition I must have a spinal tap to look for leukemia in my central nervous system.
And, just to keep things interesting, I have noticed some skin rashes and itching the past few days and that needs to be evaluated by a dermatologist.
We continue to do well. Still need to walk more to build up my strength for the ordeal. Kathleen and I appreciate your thoughts, cards, prayers, and blog comments. You are a great support.
The final meeting with the transplant doctor is 10/5. We will try to update things shortly after that.
Gordon
Saturday, August 29, 2009
Update from Gordon
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
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 15, 2009
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