When Charlie was diagnosed, he updated his friends with group emails until he became too weak and bedbound. One of the recipients on the email list was my Aunt Boo from Los Angeles. She printed out all of the emails and sent them to me several months ago. 
"I'm making myself stay ambitious for a short time after having played the Sunday Brunch at the Warwick...if I had to go more than four hours it would be time to bail. Side effects continue to compound and worsen, I can no longer speak comfortably, swallowing is excruciating, muscle aches and fatigue. Because the original tumor is in my neck, mouth pain particularly the blistering under my tongue is the main problem. But enough whining. The good news: there is no bad news...I can focus for long enough periods to write an email, play a game of cards...you have been a heck of a support system out there; I've seen almost all of you who live in Houston in the past 3 weeks...this means more to Sally and I than you know...and speaking of Sally, she appears to be none the worse for all the wear; she's been going at it 24 hours a day, I can't deny she seems up to the challenge. I would like for all of you to encourage her to try to make some time for personal interests - important ones as well as those that seem trivial...I can't honestly say when I will write again...the need for rest seems to grow and grow..."
"The tumor is indeed getting smaller...my radiologist is normally rather taciturn fellow, and it was wonderful to see him register surprise and delight with the shrinkage...I am discovering that continuing to work has been an excellent decision...it can be tough to put on a game face, the act of performing is both a great distraction from the pain and a cathartic experience. I plan to continue until I either look too bad or feel too bad. Being in a night club, around people who are drinking, exposes you to the worst and the best behaviour that humans are capable of. I actually had a woman "mimic" me the other night at one of my performances, making fun of my inability to talk clearly. She also grabbed and for some inexplicable reason rubbed the side of my neck that is so burned, my skin peeled off in her hand. This is the first time I have been the butt of that kind of schoolyard 'joke' since my pre-adolescence, and a reminder of how cruel people can be. I hope that if any of my fellow cancer battlers out there encounter this sort of attitude, they do not let it affect them to any great extent. My main reaction is to pity the poor souls who find humor in the humiliation of others. I tell this story not to elicit sympathy but to remind my friends in the support group not to take it too seriously if people tease them about bandages, burns, scarring, hair loss, speech impediments. It's my feeling that these cruelties take away much more from the perpetrator than the victim. It may be wrong but it makes us strong....I want you to know how good it feels to have my own personal "support group" out there..you are the ones who make this battle worth fighting, you are who I think of when I'm down, and you will be the ones celebrating my recovery in both real-time when I'm completely better, and in my dreams until then"
"Today was a double hit of radiation to make up for the one lost in the holiday. I had a 'long line' catheter inserted from the crook of my left arm to my heart to administer saline, liquids, and chemotherapy drugs...Sally had to take a class at MD Anderson to learn how to care for the line, flush it, etc. It was fun to kibbutz her while she was being instructed...God she is a patient woman...Saturday, Valentine's Day I did work, and it was a grand night! Many friends came out to for the show, and thanks to some industrious and secretive friends, I managed to surprise her with a little Valentine's remembrance. That was hard to pull off as we are practically joined at the hip these days...now chemotherapy: first round, Cisplatin, then 5FU...I have had several spiritual epiphanies over the last several weeks, and I can honestly say that my Faith is in a place it has never been before. Thank you all for blessing me"
"Decisions...decisions. I can no longer work, pain is back with a vengeance...I have decided to allow myself to be booked into MD Anderson as an inpatient...why have Sally shuttle me back and forth when I am spending 80% of each day there? Also, I wanted to say goodbye to the dogs, pack a bag, that sort of thing. Somehow I wanted to check into MDA on a day when I KNEW that's what I was going to do before leaving my home. Sounds strange, but it will make me feel better...Before I check in, I want to share with all of you just how many different ways I have been blessed by my friends and angels...if nothing else, this should be uplifting for you to read...it is mind boggling how much curative properties the care of others have ...I have made an inordinate amount of tips my last few weeks at work, people have found this a subtle and unrefusable way to help...
"Well, whatta you know, I am home again...I left out one benefactor in my last letter, and that's the greatest one of all...my beautiful, strong, smart wife who would kill me if she knew I was saying this publicly...going through an experience like this can make you appreciate somebody more than you thought possible and expose you to a beauty that you can only count yourself lucky to see. She is a wonder and a great joy to me."
At this point, Charlie was unable to continue the emails. He became weaker, he developed double vision that deteriorated, and his motor skills became delayed and uncoordinated. He was no longer able to transfer without maximum assistance from me from our bed to the wheel chair to the car to get to and from the hospital. I began to post:
"Well, we saw Dr. Khuri and this is what the CT scan showed: Although the primary tumor has significantly diminished, it has sent out cancerous cells through the bloodstream to the frontal lobe area and there is, as we visibly see, a mass above his eyebrow. This new tumor can not be radiated because of size and location complications. It has now spread through nerves and to the bone. Our only option is a very aggressive chemo/radiation therapy, and the protocol is quite expensive. Charlie wants to go ahead, and Dr. Khuri is going to speak with the insurance company to try to push for it."
"The infusions are 11 hours long every day...Dr. Khuri says this is 10 times the dosage he got the first go round. He is tired, disoriented, and nauseous. He is talking in his sleep saying all kinds of crazy things...he has been given medicine for anxiety, so that makes it a bit better"
"Today when I pulled the t-shirt over Charlie's head, a lot of hair came with it. I know he tries to be stoic, but I saw him wipe away tears. I keep reminding him what kills the hair kills the cancer...I also had to tell him today Dr. Khuri called today and said his white blood cell count is not good enough to begin round two...it is a glum day."
"Charlie was admitted this morning...he is hallucinating, talking, singing, passing out when he tried to stand. Don't know how long he'll be here. I will write when I can".
" I hate to write this in a general form letter, but everything is happening so fast...the tumor on his neck has returned and is the size of a half a lemon, he has become disoriented and shows other signs of rapid deterioration which indicate increased brain involvement. Dr. Khuri has suggested it is time for Hospice, and after a day's consideration by Charlie he has agreed that he is ready as this wonderful organization will support his final days in our home...Charlie's eyes are open but he is in and out. I think of him as having one foot here and one on the other side. He is describing sensations that endorse my observations...his family is surrounding him...they are a great source of comfort."
"Just to let you know, Charlie is resting comfortably at home, sleeping all but 1-2 hours a day when he visits with his parents. He is so peaceful and serene. God has given him a shelter, grace and comfort that none of us would have imagined. It is amazing to witness and be a part of this transition"
"Charlie Tilson born October 20, 1955 passed through this life on Wednesday, September 2, 1998 at 11:25 pm in the arms of his wife and mother. Survived by his wife Sally Harris Tilson of Houston, his mother, Margie Kathleen Shine, his father, Joseph T. Tilson, sister Kay Griffin, step parents Bevery Tilson and Hugh Shine, as well as numerous other in-laws, nephews, and relatives...In lieu of flowers, Charlie wanted any donations to be directed to University of Texas M.D. Anderson Cancer center. A celebration of life to be conducted by his brother in law, Dr Carl Walters will be held at Unity Church of Christianity at 3pm, Sunday September 6."
Charlie, Aunt Boo, and her husband Jack
I had entertained the idea of a blog for a few years, but the receipt of those materials combined with this being the 10th year since his passing inspired me to put thoughts/words into action. Here are some selected portions of Charlie's letters:"I'm making myself stay ambitious for a short time after having played the Sunday Brunch at the Warwick...if I had to go more than four hours it would be time to bail. Side effects continue to compound and worsen, I can no longer speak comfortably, swallowing is excruciating, muscle aches and fatigue. Because the original tumor is in my neck, mouth pain particularly the blistering under my tongue is the main problem. But enough whining. The good news: there is no bad news...I can focus for long enough periods to write an email, play a game of cards...you have been a heck of a support system out there; I've seen almost all of you who live in Houston in the past 3 weeks...this means more to Sally and I than you know...and speaking of Sally, she appears to be none the worse for all the wear; she's been going at it 24 hours a day, I can't deny she seems up to the challenge. I would like for all of you to encourage her to try to make some time for personal interests - important ones as well as those that seem trivial...I can't honestly say when I will write again...the need for rest seems to grow and grow..."
"The tumor is indeed getting smaller...my radiologist is normally rather taciturn fellow, and it was wonderful to see him register surprise and delight with the shrinkage...I am discovering that continuing to work has been an excellent decision...it can be tough to put on a game face, the act of performing is both a great distraction from the pain and a cathartic experience. I plan to continue until I either look too bad or feel too bad. Being in a night club, around people who are drinking, exposes you to the worst and the best behaviour that humans are capable of. I actually had a woman "mimic" me the other night at one of my performances, making fun of my inability to talk clearly. She also grabbed and for some inexplicable reason rubbed the side of my neck that is so burned, my skin peeled off in her hand. This is the first time I have been the butt of that kind of schoolyard 'joke' since my pre-adolescence, and a reminder of how cruel people can be. I hope that if any of my fellow cancer battlers out there encounter this sort of attitude, they do not let it affect them to any great extent. My main reaction is to pity the poor souls who find humor in the humiliation of others. I tell this story not to elicit sympathy but to remind my friends in the support group not to take it too seriously if people tease them about bandages, burns, scarring, hair loss, speech impediments. It's my feeling that these cruelties take away much more from the perpetrator than the victim. It may be wrong but it makes us strong....I want you to know how good it feels to have my own personal "support group" out there..you are the ones who make this battle worth fighting, you are who I think of when I'm down, and you will be the ones celebrating my recovery in both real-time when I'm completely better, and in my dreams until then"
"Today was a double hit of radiation to make up for the one lost in the holiday. I had a 'long line' catheter inserted from the crook of my left arm to my heart to administer saline, liquids, and chemotherapy drugs...Sally had to take a class at MD Anderson to learn how to care for the line, flush it, etc. It was fun to kibbutz her while she was being instructed...God she is a patient woman...Saturday, Valentine's Day I did work, and it was a grand night! Many friends came out to for the show, and thanks to some industrious and secretive friends, I managed to surprise her with a little Valentine's remembrance. That was hard to pull off as we are practically joined at the hip these days...now chemotherapy: first round, Cisplatin, then 5FU...I have had several spiritual epiphanies over the last several weeks, and I can honestly say that my Faith is in a place it has never been before. Thank you all for blessing me"
"Decisions...decisions. I can no longer work, pain is back with a vengeance...I have decided to allow myself to be booked into MD Anderson as an inpatient...why have Sally shuttle me back and forth when I am spending 80% of each day there? Also, I wanted to say goodbye to the dogs, pack a bag, that sort of thing. Somehow I wanted to check into MDA on a day when I KNEW that's what I was going to do before leaving my home. Sounds strange, but it will make me feel better...Before I check in, I want to share with all of you just how many different ways I have been blessed by my friends and angels...if nothing else, this should be uplifting for you to read...it is mind boggling how much curative properties the care of others have ...I have made an inordinate amount of tips my last few weeks at work, people have found this a subtle and unrefusable way to help...
Cindy LeNoir, Sally, and Karin McFarland, 2008
Local musicians, spearheaded by a couple of very good friends (Cindy LeNoir and Karin Mc Farland) helped me "cover" my booking situation in my down time...musicians are 'subbing' at my jobs and allowing me to collect the paycheck, expecting either partial or no payment from me. This is very close to having a paid vacation when I need it most in a business where there are no paid vacations...I love each and every one of you.""Well, whatta you know, I am home again...I left out one benefactor in my last letter, and that's the greatest one of all...my beautiful, strong, smart wife who would kill me if she knew I was saying this publicly...going through an experience like this can make you appreciate somebody more than you thought possible and expose you to a beauty that you can only count yourself lucky to see. She is a wonder and a great joy to me."
At this point, Charlie was unable to continue the emails. He became weaker, he developed double vision that deteriorated, and his motor skills became delayed and uncoordinated. He was no longer able to transfer without maximum assistance from me from our bed to the wheel chair to the car to get to and from the hospital. I began to post:
"Well, we saw Dr. Khuri and this is what the CT scan showed: Although the primary tumor has significantly diminished, it has sent out cancerous cells through the bloodstream to the frontal lobe area and there is, as we visibly see, a mass above his eyebrow. This new tumor can not be radiated because of size and location complications. It has now spread through nerves and to the bone. Our only option is a very aggressive chemo/radiation therapy, and the protocol is quite expensive. Charlie wants to go ahead, and Dr. Khuri is going to speak with the insurance company to try to push for it."
"The infusions are 11 hours long every day...Dr. Khuri says this is 10 times the dosage he got the first go round. He is tired, disoriented, and nauseous. He is talking in his sleep saying all kinds of crazy things...he has been given medicine for anxiety, so that makes it a bit better"
"Today when I pulled the t-shirt over Charlie's head, a lot of hair came with it. I know he tries to be stoic, but I saw him wipe away tears. I keep reminding him what kills the hair kills the cancer...I also had to tell him today Dr. Khuri called today and said his white blood cell count is not good enough to begin round two...it is a glum day."
"Charlie was admitted this morning...he is hallucinating, talking, singing, passing out when he tried to stand. Don't know how long he'll be here. I will write when I can".
" I hate to write this in a general form letter, but everything is happening so fast...the tumor on his neck has returned and is the size of a half a lemon, he has become disoriented and shows other signs of rapid deterioration which indicate increased brain involvement. Dr. Khuri has suggested it is time for Hospice, and after a day's consideration by Charlie he has agreed that he is ready as this wonderful organization will support his final days in our home...Charlie's eyes are open but he is in and out. I think of him as having one foot here and one on the other side. He is describing sensations that endorse my observations...his family is surrounding him...they are a great source of comfort."
"Just to let you know, Charlie is resting comfortably at home, sleeping all but 1-2 hours a day when he visits with his parents. He is so peaceful and serene. God has given him a shelter, grace and comfort that none of us would have imagined. It is amazing to witness and be a part of this transition"
"Charlie Tilson born October 20, 1955 passed through this life on Wednesday, September 2, 1998 at 11:25 pm in the arms of his wife and mother. Survived by his wife Sally Harris Tilson of Houston, his mother, Margie Kathleen Shine, his father, Joseph T. Tilson, sister Kay Griffin, step parents Bevery Tilson and Hugh Shine, as well as numerous other in-laws, nephews, and relatives...In lieu of flowers, Charlie wanted any donations to be directed to University of Texas M.D. Anderson Cancer center. A celebration of life to be conducted by his brother in law, Dr Carl Walters will be held at Unity Church of Christianity at 3pm, Sunday September 6."
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