They're here. The holidays. The time of year in which I am told things will be the hardest. However, as we are full blown in season, these days have not been the most difficult. In fact, I am kind of dreading the holidays coming to an end, as they inevitably bring some cheer. Brogan and Ethan being almost 5 and 3 are full swing happy for the holidays. The innocence and excitement they are filled with help to lift me. I can bypass certain things such as Christmas cards which are too hard for me to acknowledge the new Crowell family, but I can't get away with letting go of too much. In some respects I guess I should be thankful that the "little" things remain my challenge. They can sideswipe me just when I feel my feet might be touching the ground. A simple trip to a store, a particular song, an amazing moonlit night, a lazy Sunday afternoon.
While the "little" things can weigh heavily depending on the day, it is also "little" things that bring me light. The two little guys I wake up to every morning put life into perspective. They give me reason to smile and can make me laugh unlike many. We have found ourselves getting through our days with lots of music, singing and dancing. I am actually not allowed to dance, which is just as well, but I have the sheer pleasure of watching the serious moves they've already mastered. They have a penchant for Michael Jackson and are particularly fond of Beat It and Wanna Be Startin' Something. I often find myself watching them wondering, if Doug is looking down on us is he okay with his two boys rocking out to the King of Pop? It's a fleeting thought. He after all introduced them to Michael Jackson when our blu ray player came preloaded with videos. And dancing, come on....Doug would rise to any occasion that involved dancing and often take over parties with his moves. So, yes I am quite sure he is looking down on the situation proud of his boys and the inherited gene. I am sure he is looking down on us happy that we are able to find small and simple pleasures to keep us smiling.
People are always asking us how we are doing with a pained look. We are doing okay. We deal with our emotions. We talk - a lot. We don't avoid feelings. We don't try to pretend our life is something it is not or that we are in any different place than where we are as we grieve. Honestly we are probably feeling about as well as half of Americans, the only difference is that it is okay for us to admit it. We have been through hell in the last year as a family, but we found our way and in the process became even closer. We'll head into 2012 not bypassing the memories or feelings that will long be with us but we'll be keeping the beat alive to keep living a good life.
Wednesday, December 21, 2011
Tuesday, November 29, 2011
Mix Tapes
I came across this titled blog draft which Doug had started back in June. I figured I would share... I know it never made it to post as he stopped being able to really focus on writing shortly after he started this post and for him it was not fully complete. Fully complete or not, it is worth sharing to bring a bit of his writing back to all who continue to check in....
Last week during radiation I listened to mixes I had prepared on my ipod. They were only a hastily thrown together collection of songs intended to relax me and inspire me to will the cancer out of my body. I must admit I didn't spend enough time putting them together. To me making a mix of music is a daunting endeavour. Its not just a collection of your favorite songs, it can be a plan or a story, or even a resume of sorts. I remember the first mix tape I ever made very clearly, and can recall most of the songs in order. It was probably 1991, and the tape was for Missy. I spent hours making it. I had to delve into my parents vinyl collection and seek out songs from friends. In a way the tape was like a partial definition of myself that I was giving to Missy for approval or denial. When I found it in the tape deck of her car a couple weeks after giving it to her I was beyond relieved.
There was one song on that tape that I've put in every mix I've ever made. Its the kind of song that my dad would scoff at for lack of musical integrity, but for some reason it struck the right chord in me. The song is "Good Feeling" by the Violent Femmes. While the author's intent was probably related to sex, I've always pulled much more from the song. To me it is a reminder of all the "sweet spots" in life. Hitting a ball on the meat of the bat, getting big air on a snowboard and sticking the landing, the moment at a party when you realize all of your friends are laughing at once. These are the moments in life that are hard to take for granted.
Another significant mix I prepared was for my deployment to Kuwait. While I made quite a few mixes while I was there, this one was the most important. I made it on the long plane ride over. This was a "when the shit hits the fan" mix. If for some reason I found myself in combat, which would have been unlikely, I wanted a set of music that would carry me through it. It was meant to serve as an emotional plan so I could keep a level head in the face of something I wasn't truly prepared for.
About 3/4 of the way through my deployment I had the opportunity to go to Iraq. I don't remember the exact mission, but I was really excited to go. I wanted to see war first hand. I flew in a chinook which was cool except for the fact that it was 120 degrees inside. Many of the soldiers were passed out. We made it to Bagdad International Airport, which was now occupied by "the good guys" and stayed overnight. Unfortunately we had to leave the next day for some reason I don't recall. On the return trip I sat right next to the tail gunner and helped him throw bags of candy out the back of the bird to groups of Iraqi children on the ground chasing the helicopter. They'd obviously done this before. I thought it was funny that this was one of the methods invented by psyops to win the hearts and minds of the Iraqis. Suddenly I was jerked out of that thought by the realization that we were going down quickly. I learned it wasn't our chinook but the one we were flying with that had engine trouble. Soon the sergeant in charge was yelling at everyone to lock and load and prepare to set up a perimeter. We could see Iraqi men on the ground running towards us. I got my helmet on, my m16 ready and then set up my mix and pressed play. We landed with a thud and the guy in charge took off out of the tail door. He told us to sit tight. I really wanted to get out, but followed orders. He finally returned and told us to relax. The Iraqi men running towards us were a group of farmers coming to help. They could tell the other chinook was in trouble. I pressed stop on my cd player, no longer feeling the need to be bouyed up by my mix.
Last week during radiation I listened to mixes I had prepared on my ipod. They were only a hastily thrown together collection of songs intended to relax me and inspire me to will the cancer out of my body. I must admit I didn't spend enough time putting them together. To me making a mix of music is a daunting endeavour. Its not just a collection of your favorite songs, it can be a plan or a story, or even a resume of sorts. I remember the first mix tape I ever made very clearly, and can recall most of the songs in order. It was probably 1991, and the tape was for Missy. I spent hours making it. I had to delve into my parents vinyl collection and seek out songs from friends. In a way the tape was like a partial definition of myself that I was giving to Missy for approval or denial. When I found it in the tape deck of her car a couple weeks after giving it to her I was beyond relieved.
There was one song on that tape that I've put in every mix I've ever made. Its the kind of song that my dad would scoff at for lack of musical integrity, but for some reason it struck the right chord in me. The song is "Good Feeling" by the Violent Femmes. While the author's intent was probably related to sex, I've always pulled much more from the song. To me it is a reminder of all the "sweet spots" in life. Hitting a ball on the meat of the bat, getting big air on a snowboard and sticking the landing, the moment at a party when you realize all of your friends are laughing at once. These are the moments in life that are hard to take for granted.
Another significant mix I prepared was for my deployment to Kuwait. While I made quite a few mixes while I was there, this one was the most important. I made it on the long plane ride over. This was a "when the shit hits the fan" mix. If for some reason I found myself in combat, which would have been unlikely, I wanted a set of music that would carry me through it. It was meant to serve as an emotional plan so I could keep a level head in the face of something I wasn't truly prepared for.
About 3/4 of the way through my deployment I had the opportunity to go to Iraq. I don't remember the exact mission, but I was really excited to go. I wanted to see war first hand. I flew in a chinook which was cool except for the fact that it was 120 degrees inside. Many of the soldiers were passed out. We made it to Bagdad International Airport, which was now occupied by "the good guys" and stayed overnight. Unfortunately we had to leave the next day for some reason I don't recall. On the return trip I sat right next to the tail gunner and helped him throw bags of candy out the back of the bird to groups of Iraqi children on the ground chasing the helicopter. They'd obviously done this before. I thought it was funny that this was one of the methods invented by psyops to win the hearts and minds of the Iraqis. Suddenly I was jerked out of that thought by the realization that we were going down quickly. I learned it wasn't our chinook but the one we were flying with that had engine trouble. Soon the sergeant in charge was yelling at everyone to lock and load and prepare to set up a perimeter. We could see Iraqi men on the ground running towards us. I got my helmet on, my m16 ready and then set up my mix and pressed play. We landed with a thud and the guy in charge took off out of the tail door. He told us to sit tight. I really wanted to get out, but followed orders. He finally returned and told us to relax. The Iraqi men running towards us were a group of farmers coming to help. They could tell the other chinook was in trouble. I pressed stop on my cd player, no longer feeling the need to be bouyed up by my mix.
Thursday, October 13, 2011
Memorial Endowments
After much thought and working out details we have two chosen two memorial endowments in Doug's name. It was not an easy task as he was so talented in so many facets of his life and subsequently made very strong connections in so many places. Not only did we want to ensure the memorials were linked to Doug's life and love of it, but we also wanted to ensure they would help carry on a legacy for the boys. Doug had already devised so many plans for his future with Brogan and Ethan and each of these memorials contributes to keeping him present in their lives as well as the lives of so many others.
Green Mountain Club, Long Trail Shelter Maintenance Endowment:
As many know between Doug's work as a Landscape Architect and his personal passion for hiking and the outdoors, the mountains always provided a certain peace and solace for Doug. While a student at the University of Vermont from 1993 to 1997, Doug and his friends enjoyed many adventures on the Long Trail. In October of 1997, not long after graduating, Doug solo hiked the 273 mile length of the Long Trail in 18 days. Even though he did not live in Vermont for the following 10 years he made many trips back here and almost always made time to hike some part of the trail. When Doug and I settled in Vermont in 2007, we choose a home in Hinesburg where we look out across a forested landscape crowned by Camel's Hump. Brogan's room takes in a great view of the mountain and he had the fortune to be able to hike it a few times with Doug when he was small enough to fit into the kid carrier.
The Long Trail and its shelters are maintained by the Green Mountain Club, a 101 year old organization dedicated to "making the Vermont mountain play a larger part in the life of the people." We are working towards endowing the life maintenance of a shelter near Camels Hump in Doug's name. Shelters are either primitive 3 walled lean-tos or small cabins that can offer a roof to backpackers without tents. The shelter will have a plaque to honor Doug's memory and will be installed on an interior wall. The shelter will serve as a place for friends and family of Doug to hike into and gather to remember him. The family has asked Keith Wagner and Jeff Hodgson, Doug's former employer who were also mentors and friends, to design the special memorial plaque. Even though Doug is no longer with us, he will continue to push many towards adventure and physical pursuits.
Checks made out to the Green Mountain Club can be mailed to:
Green Mountain Club
4711 Waterbury-Stowe Road
Waterbury Center, VT 05677
Please be sure to indicate the donation is in memory of Doug Crowell.
Alternatively, click here to donate online with a credit card. Please be sure to click the box signifying, "Yes, this is a memorial gift." Checking the box will bring up several fields including one for the honoree's name: Douglas Crowell.
Doug Crowell Memorial Scholarship Fund, Xavier High School:
Doug attended Xavier High School, a Catholic Preparatory High School in Middletown, Connecticut from 1989 to 1993. Doug embraced many opportunities presented to him at Xavier that would not have otherwise been available to him. He believed that his education there laid a very solid foundation for his future. Xavier is where Doug first started running competitively and developed that passion that stayed with him throughout his life. He made many good friends while at Xavier that he continued lifelong friendships with. Doug and I met while he was at Xavier and I was a student at the sister school, Mercy. Xavier pushed him to be a better student than he may have thought he was when he first started there. He had many teachers along with his running coach that encouraged him recognize even more of his potential and talents. Doug gained a solid foundation at Xavier that later helped him in obtaining his Bachelors at UVM and Master's at Rhode Island School of Design.
With the Endowed Scholarship Fund, Xavier's mark of Doug's life will live on by helping to support a Freshman through Senior with tuition. The family has worked with the school to determine the criteria that will be used in selecting the recipient of the scholarship on an annual basis by drawing on some of Doug's best attributes that made him such dynamic student himself. Annually the family will be invited to the ceremony where the Scholarship will be presented in Doug's name to the student for that year. The boys will get to be a part of this and see Doug's name and legacy live on while helping other students similar to Doug.
Checks made out to Xavier High School can be mailed to:
Xavier High School Advancement Office
181 Randolph Road
Middletown, CT 06457
Please be sure to indicate that the donation is in memory of Douglas Crowell
Alternatively, click here to donate online with a credit card. Please be sure to write "In memory of Douglas Crowell," in the field for notes or comments.
We know that Doug touched many peoples lives and had a significant impact on many. Nothing will ever be able to replace his indomitable spirit, but to help his name live on in meaningful memorials that help to capture some of who he was, gives us all something to remember.
Thank you all for your thoughtful remembrance of Doug's life.
Green Mountain Club, Long Trail Shelter Maintenance Endowment:
As many know between Doug's work as a Landscape Architect and his personal passion for hiking and the outdoors, the mountains always provided a certain peace and solace for Doug. While a student at the University of Vermont from 1993 to 1997, Doug and his friends enjoyed many adventures on the Long Trail. In October of 1997, not long after graduating, Doug solo hiked the 273 mile length of the Long Trail in 18 days. Even though he did not live in Vermont for the following 10 years he made many trips back here and almost always made time to hike some part of the trail. When Doug and I settled in Vermont in 2007, we choose a home in Hinesburg where we look out across a forested landscape crowned by Camel's Hump. Brogan's room takes in a great view of the mountain and he had the fortune to be able to hike it a few times with Doug when he was small enough to fit into the kid carrier.
The Long Trail and its shelters are maintained by the Green Mountain Club, a 101 year old organization dedicated to "making the Vermont mountain play a larger part in the life of the people." We are working towards endowing the life maintenance of a shelter near Camels Hump in Doug's name. Shelters are either primitive 3 walled lean-tos or small cabins that can offer a roof to backpackers without tents. The shelter will have a plaque to honor Doug's memory and will be installed on an interior wall. The shelter will serve as a place for friends and family of Doug to hike into and gather to remember him. The family has asked Keith Wagner and Jeff Hodgson, Doug's former employer who were also mentors and friends, to design the special memorial plaque. Even though Doug is no longer with us, he will continue to push many towards adventure and physical pursuits.
Checks made out to the Green Mountain Club can be mailed to:
Green Mountain Club
4711 Waterbury-Stowe Road
Waterbury Center, VT 05677
Please be sure to indicate the donation is in memory of Doug Crowell.
Alternatively, click here to donate online with a credit card. Please be sure to click the box signifying, "Yes, this is a memorial gift." Checking the box will bring up several fields including one for the honoree's name: Douglas Crowell.
Doug Crowell Memorial Scholarship Fund, Xavier High School:
Doug attended Xavier High School, a Catholic Preparatory High School in Middletown, Connecticut from 1989 to 1993. Doug embraced many opportunities presented to him at Xavier that would not have otherwise been available to him. He believed that his education there laid a very solid foundation for his future. Xavier is where Doug first started running competitively and developed that passion that stayed with him throughout his life. He made many good friends while at Xavier that he continued lifelong friendships with. Doug and I met while he was at Xavier and I was a student at the sister school, Mercy. Xavier pushed him to be a better student than he may have thought he was when he first started there. He had many teachers along with his running coach that encouraged him recognize even more of his potential and talents. Doug gained a solid foundation at Xavier that later helped him in obtaining his Bachelors at UVM and Master's at Rhode Island School of Design.
With the Endowed Scholarship Fund, Xavier's mark of Doug's life will live on by helping to support a Freshman through Senior with tuition. The family has worked with the school to determine the criteria that will be used in selecting the recipient of the scholarship on an annual basis by drawing on some of Doug's best attributes that made him such dynamic student himself. Annually the family will be invited to the ceremony where the Scholarship will be presented in Doug's name to the student for that year. The boys will get to be a part of this and see Doug's name and legacy live on while helping other students similar to Doug.
Checks made out to Xavier High School can be mailed to:
Xavier High School Advancement Office
181 Randolph Road
Middletown, CT 06457
Please be sure to indicate that the donation is in memory of Douglas Crowell
Alternatively, click here to donate online with a credit card. Please be sure to write "In memory of Douglas Crowell," in the field for notes or comments.
We know that Doug touched many peoples lives and had a significant impact on many. Nothing will ever be able to replace his indomitable spirit, but to help his name live on in meaningful memorials that help to capture some of who he was, gives us all something to remember.
Thank you all for your thoughtful remembrance of Doug's life.
Saturday, October 8, 2011
The Adventure is Over
From the time Doug got diagnosed he called his Leukemia an "adventure." As you know from the blog he did not approach it with anger or hate. That is what likely kept him mostly smiling through seven months of suffering.
I have always looked at the word adventure as a positive thing. An adventure always evokes feelings of excitement about the unknown that you will be conquering. Together we felt we would be able to conquer this. Together everything we faced was more manageable. After September 10th, everything got much more difficult as our adventure turned into a solo trek. One, where I must be careful to navigate each day and each step. I feel worn and defeated from our adventure. I feel I have all but lost the strength I had during the previous seven months.
Strength is easy to find when you are with someone who you love so deeply. I heard more times from February to September, that people could not believe how I strong I was in the face of all that we had been dealt. Doug made it easy to be strong. Truly easy....I never really had to work at finding my strength, with him by my side. Today, I find myself digging deep to find a different strength and I keep coming up short. Sure, we have two amazing boys who keep me busy and smiling and right now do a lot of guiding me through my days. But, there is a definite ache I can not cover over and can't imagine getting relief from.
I feel pain in my heart and in my gut. Emotions that were once controllable, seem to be uncontrollable. I feel anger at all the suffering Doug endured over the last seven months to have this be the final outcome. He was not cut one break along the way with his leukemia and fought harder than the doctors or nurses had seen any patient fight. He wanted so badly to live which is what makes his death all that much harder and seemingly unfair. All the prayers, all the support and his unfaltering will to beat this did not prevail. I don't understand why, so it is damn hard to try and explain it to your 4.5 year old who wants to know, "why God took our daddy when we still need him."
Our adventure is over and the kids and I have started to embark on our trek. A trek that will hopefully lead us to healing and happiness again over time and not have our lives be defined as the kids who lost their father to cancer and the woman who lost her husband to the same.
Writing was always an outlet for Doug. When he got diagnosed with AML I too started writing. It is hard not to - you need a place to put all your feelings down and get them out. In the wake of overwhelming feelings, I figure why not let them out there. It can't make things hurt anymore and maybe in some way can help me to feel release. After all, we as a family will be < aml.
I have always looked at the word adventure as a positive thing. An adventure always evokes feelings of excitement about the unknown that you will be conquering. Together we felt we would be able to conquer this. Together everything we faced was more manageable. After September 10th, everything got much more difficult as our adventure turned into a solo trek. One, where I must be careful to navigate each day and each step. I feel worn and defeated from our adventure. I feel I have all but lost the strength I had during the previous seven months.
Strength is easy to find when you are with someone who you love so deeply. I heard more times from February to September, that people could not believe how I strong I was in the face of all that we had been dealt. Doug made it easy to be strong. Truly easy....I never really had to work at finding my strength, with him by my side. Today, I find myself digging deep to find a different strength and I keep coming up short. Sure, we have two amazing boys who keep me busy and smiling and right now do a lot of guiding me through my days. But, there is a definite ache I can not cover over and can't imagine getting relief from.
I feel pain in my heart and in my gut. Emotions that were once controllable, seem to be uncontrollable. I feel anger at all the suffering Doug endured over the last seven months to have this be the final outcome. He was not cut one break along the way with his leukemia and fought harder than the doctors or nurses had seen any patient fight. He wanted so badly to live which is what makes his death all that much harder and seemingly unfair. All the prayers, all the support and his unfaltering will to beat this did not prevail. I don't understand why, so it is damn hard to try and explain it to your 4.5 year old who wants to know, "why God took our daddy when we still need him."
Our adventure is over and the kids and I have started to embark on our trek. A trek that will hopefully lead us to healing and happiness again over time and not have our lives be defined as the kids who lost their father to cancer and the woman who lost her husband to the same.
Writing was always an outlet for Doug. When he got diagnosed with AML I too started writing. It is hard not to - you need a place to put all your feelings down and get them out. In the wake of overwhelming feelings, I figure why not let them out there. It can't make things hurt anymore and maybe in some way can help me to feel release. After all, we as a family will be < aml.
Sunday, August 14, 2011
Rock and Roll
I am not emerging from the woods to greet you just yet. Rather, like mail from a distant post office I am just touching base. Today is day +66, meaning I am 66 days out from the day I received my stem cells. I am making progress. I was able to get out of bed and walk two laps around my room today, sit in a chair for 1/2 an hour, raise my arms over my head 5 times....you get the idea. Progress is slow, but the doctors feel that I have started to make a recovery. It is going to be more slow going, but they say I should return all of my normal functions. I've been dreaming of swimming and lemonade non-stop. It looks like I will have to wait until next year for those as my stomach and immune system build themselves up. It seems like a long time, but really I just want to be home with my family and that will come much sooner.
On the upside, I saw my boys this weekend when they came in to visit me on Friday. It was a great visit. Watching the boys run around the room and fidget with their mask and gloves is a riot. For a special treat Brogan brought me the gift of music. He brought his guitar and his little red pick and spent most of the visit hemming and hawing over when, who and how he would begin the song. When he finally got the courage the music took over and he ripped off his mask and got one verse out. The lyrics were, "one, two, three..." He threw his fist in the air and ran out of the room. It was straight up rock and roll. Ethan jumped up and followed Brogan straight out the door so he could get a cookie.
Thank you to everyone who have been so supportive and loving. It touches me everyday and I can not wait to get out of here and see you all. That is all I can do for now.
On the upside, I saw my boys this weekend when they came in to visit me on Friday. It was a great visit. Watching the boys run around the room and fidget with their mask and gloves is a riot. For a special treat Brogan brought me the gift of music. He brought his guitar and his little red pick and spent most of the visit hemming and hawing over when, who and how he would begin the song. When he finally got the courage the music took over and he ripped off his mask and got one verse out. The lyrics were, "one, two, three..." He threw his fist in the air and ran out of the room. It was straight up rock and roll. Ethan jumped up and followed Brogan straight out the door so he could get a cookie.
Thank you to everyone who have been so supportive and loving. It touches me everyday and I can not wait to get out of here and see you all. That is all I can do for now.
Thursday, July 28, 2011
Guest Blog Spot....
Quick update - Doug is going to be starting a new drug tomorrow in the hopes that it will control the GVHD and help to start to repair all of the damage he has had in his gut and small intestine. Although his liver responded well to the steroids, his gut did not and appears to be steroid refractory.
If the new drug works it will take 5-10 days before we see any improvement. If the drug does not work, they will have to move on to another agent. He has had a rough week with the GVHD. All that was good over the weekend went south on Monday when he started having blood presenting alongside his GI issues. The smarty pants intern tried to tell him it was from the sips of liquid he was having over the weekend. His wise old doctor, said not a chance and told Doug he can continue to have some very small sips of liquid as long as he keeps it in check.
We have a guest blogger this week. Doug's college room mate, Jimmy, made a long trek to Boston from Syracuse, NY to pay Doug a visit. Jim definitely helped to life his spirits and it was great for Doug to have a fresh mug to look at. He has been very reserved about having visitors due to his GI issues, but most of it is nothing Jimmy hasn't seen before.
I had the good fortune to spend Saturday night and Sunday morning visiting with Doug and his family in Boston. Like many of you, I have anxiously awaited and so much appreciated the updates via this blog. I hope here to contribute another perspective and to share some of my experience for those who cannot be with Doug right now.
Doug and I were college roommates, so it felt oddly nostalgic to be with him in a small institutionalized room with sparse furniture and tiled floor. And, to be frank, there was one time or two back then that I witnessed him in severe gastrointestinal distress, but it never lasted for a month like this horrendous bout. Physically, Doug is in pretty rough condition, but I was there amidst a few positive developments. As Missy mentioned in her Monday blog post, he has had a couple consecutive good days in terms of nausea and vomiting. Also, he is now allowed to sip some liquids, as opposed to just wetting his mouth and spitting or suctioning it out. He will have to wait for the fruit concoction described in his interview, but this was a milestone nonetheless, especially since his first sips did not have negative repercussions.
Mentally, Doug is Doug, which was awesome and heartening to witness. His speech was a little slowed, and he occasionally drifted asleep and carried our conversation into his dreams, some of which excruciatingly involved the franchise Edible Arrangements. But he was otherwise lucid, intense, and full of conviction as we talked about plans for the future - everything from a canoe camping trip to trying to take as good of care of his family as they are taking of him. And as if there was any doubt from the blog posts, his sense of humor remains indomitable. When he was telling me about the letter from his donor, he took advantage of my gullibility by claiming that the donor was named Matt, and was from Chester, CT. As I mentally connected the dots suggesting that, no way!, could it be one of our old high school friends?!, he admitted he was pulling my leg.
As I drove out of Boston I felt sadness for the suffering that my friend and his family are enduring. But that was eclipsed by the reassurance that Doug is as strong and tough and determined as we all know he is. The veteran of Operation Iraqi Freedom, the man who backpacked the length of Vermont in 18 days, the student who bravely signed on as my roommate - twice! – is confronting the next life challenge with his usual humor, good nature, and grace.
Monday, July 25, 2011
We have Contact...
So the big doctor meeting on Friday did not net a whole lot of anything except for more waiting and watching. The drug the doctors came up with as a possible second line defense they are not particularly fond of due to Doug's immunocompromised state. He continues to have no immune system and won't for some time. This makes one of the biggest risks for him an infection. In fact, the boys were here this weekend but Brogan coughed a few times over the course of the weekend, so they were unable to go in. No risking anything.
So for the next few days we'll all sit tight and wait to see if his body and his current course of treatment work together to slowly turn his GVHD of the gut around.
On another note - Doug's donor sent him a letter. It is not something that happens very often. In fact the nurses were saying that in many, many years of doing BMT's this is pretty much a rarity. Below is a copy of the letter word for German-English word:
Dear Genetic Twin,
It's two weeks ago that you got my stem cells and I hope they do their job and help you to recover. How do you feel? I was told it will take up to three months before you might get better, get well again.
I'm a 44 years old xxxx, married, we have two kids. The boy is 8, the girl 6. Do you have family?
I would be glad to hear from you if you feel well enough to answer, just a short message, how you are doing.
My thoughts are with you and I hope you'll get better soon - and finally well some time.
All the best,
Your genetic twin
Pretty fantastic!
Doug is getting ready for PT right now. His favorite kind of medical professional! He has asked several times if he can have a PT as his Primary Doctor since he credits the PT in VT for recognizing there was more going on than a sciatic nerve problem.
He has had a few good days over the weekend and we hope and pray that they continue. Thanks to everyone for the words of encouragement and posts back on the blog. He has actually felt good enough to periodically check them over the last few days and he really enjoys the messages. The support is and has been tremendous and we thank you all for staying on this journey with us.
So for the next few days we'll all sit tight and wait to see if his body and his current course of treatment work together to slowly turn his GVHD of the gut around.
On another note - Doug's donor sent him a letter. It is not something that happens very often. In fact the nurses were saying that in many, many years of doing BMT's this is pretty much a rarity. Below is a copy of the letter word for German-English word:
Dear Genetic Twin,
It's two weeks ago that you got my stem cells and I hope they do their job and help you to recover. How do you feel? I was told it will take up to three months before you might get better, get well again.
I'm a 44 years old xxxx, married, we have two kids. The boy is 8, the girl 6. Do you have family?
I would be glad to hear from you if you feel well enough to answer, just a short message, how you are doing.
My thoughts are with you and I hope you'll get better soon - and finally well some time.
All the best,
Your genetic twin
Pretty fantastic!
Doug is getting ready for PT right now. His favorite kind of medical professional! He has asked several times if he can have a PT as his Primary Doctor since he credits the PT in VT for recognizing there was more going on than a sciatic nerve problem.
He has had a few good days over the weekend and we hope and pray that they continue. Thanks to everyone for the words of encouragement and posts back on the blog. He has actually felt good enough to periodically check them over the last few days and he really enjoys the messages. The support is and has been tremendous and we thank you all for staying on this journey with us.
Thursday, July 21, 2011
Interview with Doug
All is holding steady here. Currently no better and currently no worse. Everyone needs to see some movement towards better, so tomorrow the team of Dana Farber researchers and big shot Bone Marrow Transplant Docs are getting together to talk all about Doug and figure out next steps to work towards getting him out of here.
Since Doug still can not really focus to write and there is not a tremendous amount of newness to report other than more vomiting and diarrhea, we figured I could interview him. Please take this lightly...he has just had some Ativan and this is my first ever interview.
m:What has been the best part of your hospital stay?
d: Any day that all of my family is here and I don't feel sick.
m: What has been the worst part of your stay?
d: The past three weeks with all the puking, diarrhea and cramping. I can't eat or drink and I've got an amazing drink on my mind that doesn't contain alcohol that is driving me crazy to think about and I can't have it.
m: What is in this magic drink?
d: Peaches, mangoes and kiwis mixed with water and ice - ice cold on the rocks. Then there is a watermelon, blueberry, strawberry combo that I haven't quite focused on as much.
m: What is the funniest thing that has happened to you in the hospital - any stay?
d: Catching the Cleaning Woman in VT outside my room reading a flashcard with the word Vagina on it. My favorite word since childhood. She caught me catching her and explained she had to learn anatomy for a medical terminology exam. Once when I was little my parents let me say penis and vagina over and over again at the dinner table thinking I would lose interest. It went on for hours and I laughed the whole time.
m: How old were you then?
d: It was only 5 years ago. No really maybe 3 or 4 years old.
m: Have you caught Brogan using that word yet?
d: Yes, but with a lot more maturity than I do.
m: Any music you have spent a lot of time listening to in here?
d: No....I made a mixed tape so it has been a lot of different songs. Homeward Bound has been particularly poignant through this.
m: Thoughts on the Red Sox this year?
d: This is the part of the season I do not pay attention to. They'll either suck, be mediocre or really good and it doesn't matter until the playoffs.
m: What do you like best about the view from your room (his view stinks...)?
d: That the sky is 1/3 open. The buildings block the rest, but at least I get some.
m: What have you been doing with your days?
d: Oh my god! A lot of being in bed and pooping and puking, pretty much all mutually exclusive. My goal at night is to make it through on one pair of underwear which means half the time I don't sleep because I am too worried about it.
m: You have a lot of underwear here, so that should not impede your rest.
d: There have been a lot of times in the past week where I have just wanted to stop and end all of it and not fight anymore, but with that I don't think the pain and suffering would end and would just get worse because I would be separated from my family and friends where they can help me and love me and I can love them back. So, I look at my boys, and my family and that giant iced peached mango drink that I am going to make and hope that in a few days it will all go away and I'll be able to come home and be with my family and play with my boys while I sip that drink.
d: That's a good blog.
Since Doug still can not really focus to write and there is not a tremendous amount of newness to report other than more vomiting and diarrhea, we figured I could interview him. Please take this lightly...he has just had some Ativan and this is my first ever interview.
m:What has been the best part of your hospital stay?
d: Any day that all of my family is here and I don't feel sick.
m: What has been the worst part of your stay?
d: The past three weeks with all the puking, diarrhea and cramping. I can't eat or drink and I've got an amazing drink on my mind that doesn't contain alcohol that is driving me crazy to think about and I can't have it.
m: What is in this magic drink?
d: Peaches, mangoes and kiwis mixed with water and ice - ice cold on the rocks. Then there is a watermelon, blueberry, strawberry combo that I haven't quite focused on as much.
m: What is the funniest thing that has happened to you in the hospital - any stay?
d: Catching the Cleaning Woman in VT outside my room reading a flashcard with the word Vagina on it. My favorite word since childhood. She caught me catching her and explained she had to learn anatomy for a medical terminology exam. Once when I was little my parents let me say penis and vagina over and over again at the dinner table thinking I would lose interest. It went on for hours and I laughed the whole time.
m: How old were you then?
d: It was only 5 years ago. No really maybe 3 or 4 years old.
m: Have you caught Brogan using that word yet?
d: Yes, but with a lot more maturity than I do.
m: Any music you have spent a lot of time listening to in here?
d: No....I made a mixed tape so it has been a lot of different songs. Homeward Bound has been particularly poignant through this.
m: Thoughts on the Red Sox this year?
d: This is the part of the season I do not pay attention to. They'll either suck, be mediocre or really good and it doesn't matter until the playoffs.
m: What do you like best about the view from your room (his view stinks...)?
d: That the sky is 1/3 open. The buildings block the rest, but at least I get some.
m: What have you been doing with your days?
d: Oh my god! A lot of being in bed and pooping and puking, pretty much all mutually exclusive. My goal at night is to make it through on one pair of underwear which means half the time I don't sleep because I am too worried about it.
m: You have a lot of underwear here, so that should not impede your rest.
d: There have been a lot of times in the past week where I have just wanted to stop and end all of it and not fight anymore, but with that I don't think the pain and suffering would end and would just get worse because I would be separated from my family and friends where they can help me and love me and I can love them back. So, I look at my boys, and my family and that giant iced peached mango drink that I am going to make and hope that in a few days it will all go away and I'll be able to come home and be with my family and play with my boys while I sip that drink.
d: That's a good blog.
Thursday, July 14, 2011
Day +35
It has been a few weeks since a post. We are still in Boston and Doug is still at BWH fighting the Germans. When I last posted Doug just found out he had mild GVHD of the liver. Quite a bit has and has not happened since then.
The GVHD of the liver is all but resolved. Doug's liver markers are back to normal and responded nicely to the steroid treatments. It was not a fast process, but as of today they are officially all in normal range. Great! He started IV nutrition again last week as the liver started to show signs of recovery. He has been attached to his bag of white wonder 23 hours a day since.
While the GVHD of the liver seems controlled, he had a procedure done on the 5th of July to determine why he has been having vicious diarrhea and continued nausea and vomiting. The results showed more GVHD, but this time of his Gut and this time severe. The doctors immediately started him on a host of new immunosupressants to once again try and beat down those German cells. So far, it seems the cells are fighting harder than the drugs. The doctors said that it could take up to a week to work. Tomorrow marks a week, so we are hopeful that he starts to get some reprieve.
Another wonderful trait he has had to deal with is cankles. His weight as of today is 175 lbs. You might remember from the last post it was 163lbs. While it would be wonderful to think it is due to the white wonder (iv nutrition), in reality his albumin level went AWOL over the last few weeks for a host of reasons I am not going to pretend I understand. What I do understand is that the low levels are causing fluid retention which is particularly affecting him below the knee. His legs are once again giving him a workout.
Right now we are in a bit of a wait and watch pattern. They literally track everything that comes out of him and wait and watch for a pattern of a decrease. He is getting pretty sick of being sick and all of his energy is being sapped by trying to keep up with his gut. Over this past week things have not gotten worse, but at the same time he has showed no sign of improvement yet. We will continue to wait and watch intently.
The kids were in again this weekend for their 3rd or 4th visit. Doug moved rooms so this was their first time in his new room. Ethan walked in and immediately went to the bulletin board and said, "where's my lightnin' mcqueen card for daddy?" Brogan walked in and said , "why are your lips so dry daddy?" He then turned to me and whispered, "mom, you should really bring daddy some chapstick." Their concerns about Doug remain the same - "kachow!"
The GVHD of the liver is all but resolved. Doug's liver markers are back to normal and responded nicely to the steroid treatments. It was not a fast process, but as of today they are officially all in normal range. Great! He started IV nutrition again last week as the liver started to show signs of recovery. He has been attached to his bag of white wonder 23 hours a day since.
While the GVHD of the liver seems controlled, he had a procedure done on the 5th of July to determine why he has been having vicious diarrhea and continued nausea and vomiting. The results showed more GVHD, but this time of his Gut and this time severe. The doctors immediately started him on a host of new immunosupressants to once again try and beat down those German cells. So far, it seems the cells are fighting harder than the drugs. The doctors said that it could take up to a week to work. Tomorrow marks a week, so we are hopeful that he starts to get some reprieve.
Another wonderful trait he has had to deal with is cankles. His weight as of today is 175 lbs. You might remember from the last post it was 163lbs. While it would be wonderful to think it is due to the white wonder (iv nutrition), in reality his albumin level went AWOL over the last few weeks for a host of reasons I am not going to pretend I understand. What I do understand is that the low levels are causing fluid retention which is particularly affecting him below the knee. His legs are once again giving him a workout.
Right now we are in a bit of a wait and watch pattern. They literally track everything that comes out of him and wait and watch for a pattern of a decrease. He is getting pretty sick of being sick and all of his energy is being sapped by trying to keep up with his gut. Over this past week things have not gotten worse, but at the same time he has showed no sign of improvement yet. We will continue to wait and watch intently.
The kids were in again this weekend for their 3rd or 4th visit. Doug moved rooms so this was their first time in his new room. Ethan walked in and immediately went to the bulletin board and said, "where's my lightnin' mcqueen card for daddy?" Brogan walked in and said , "why are your lips so dry daddy?" He then turned to me and whispered, "mom, you should really bring daddy some chapstick." Their concerns about Doug remain the same - "kachow!"
Friday, July 1, 2011
Day +22 and GVHD
Still Missy here. Today marks day +22 since the SCT. Good news is those new cells are engrafting and setting up shop in Doug's body. But, like everything else with this disease, it has not been an easy engraftment process.
Doug is still in the hospital. He had a really rough day with vomiting on Saturday and then fevers on Sunday, so they put him on watch and wait mode here hoping they could send him home the early part of this past week. Around that same time he also developed what seemed like a nasty cold. He was feeling so sick with nausea and violent vomiting that he was eating nothing. On Monday they did a CT scan of his head to see if the cold had settled in his sinuses and to ensure that with all of his forceful sickness, he had not burst a blood vessel somewhere in his head. The CT scan came out clear for that, but did show sinus inflammation. They started him on IV antibiotics to treat the sinus infection. By the end of the day Monday a lacy like rash popped up on his body.
While all of this was going on, his liver enzymes had also started to creep up. Each day they were basically doubling until by Thursday they were at 50x greater than the normal range. On Wednesday, as the numbers were getting quite concerning, the doctors started him on Prednisone (a steroid) to help treat what they thought might be the beginning of graft vs. host disease (GVHD). They also decided they wanted him to have a trans jugular liver biopsy on Thursday morning which could help them rule out certain things and confirm their course of treatment. For the biopsy the doctors went in through his jugular vein and threaded their way down to his liver to help themselves to a small sample of it.
They were looking for one of four things in the biopsy, but of the four, the two most likely culprits would be Hepatitis or GVHD. Doug came into the SCT negative for hepatitis, however we do know his donor did have it present at some point in his body. Not currently, but at some point which made it possible that Doug could now have it. I think in a previous post Doug talked about having to sign off on his European donor to acknowledge that Doug could get Mad Cow or Hepatitis from the transplant. A small price to pay if it beat the leukemia.
At 5pm today we got confirmation that his liver is showing mild signs of GVHD. The fact that it is mild is good. However, they did find that he does have some acute liver cell damage that is more than they would typically see with a mild GVHD. Currently they are not sure why he has this acute damage or what it is from. It could be in response to a drug or combo of drugs he has had to take in treatment or it could be something viral. The good news regardless, is that his liver function held stable today and did not climb more. They are looking at that as a sign that the Prednisone is helping to treat the GVHD and we should expect to see the liver enzymes continue to go down.
All in all the doctors feel confident the rash from earlier in the week, the nausea and vomiting as well as the confirmation of the liver showing GVHD is just that - Graft vs. Host Disease. To help with a base understanding of what it is, "GVHD is a common complication of allogenic SCT in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack." I have to credit Wikipedia with the explanation there. Basically as engraftment has been occurring, the German is fighting Doug's body since those cells know it is not their normal environment. It makes me wonder if they are attacking the liver hard as they recognize it is not an Octoberfest and bratwurst laden liver. Although for those of you who know Doug well, you know he likes good beer, and he used to have a serious penchant for "cheddarwurst" - perhaps one of the most disgusting meat products available. I think even the Germans would concur.
Right now Doug is sleeping. He has been sleeping about 20 hours a day although not necessarily restfully. He has still had nothing to eat since Saturday morning of last week and no IV nutrition due to how taxing it would be to his liver in its current state. He is extremely weak right now from all he has been through this past week and his weight is down to 163 lbs. As we all know, he is strong and will fight through all of this. He has a goal once this is all over to get back into doing triathlons. He is convinced his leaner frame will at least make the swim easier than his old huge muscular sinking thighs ever did!
Doug is still in the hospital. He had a really rough day with vomiting on Saturday and then fevers on Sunday, so they put him on watch and wait mode here hoping they could send him home the early part of this past week. Around that same time he also developed what seemed like a nasty cold. He was feeling so sick with nausea and violent vomiting that he was eating nothing. On Monday they did a CT scan of his head to see if the cold had settled in his sinuses and to ensure that with all of his forceful sickness, he had not burst a blood vessel somewhere in his head. The CT scan came out clear for that, but did show sinus inflammation. They started him on IV antibiotics to treat the sinus infection. By the end of the day Monday a lacy like rash popped up on his body.
While all of this was going on, his liver enzymes had also started to creep up. Each day they were basically doubling until by Thursday they were at 50x greater than the normal range. On Wednesday, as the numbers were getting quite concerning, the doctors started him on Prednisone (a steroid) to help treat what they thought might be the beginning of graft vs. host disease (GVHD). They also decided they wanted him to have a trans jugular liver biopsy on Thursday morning which could help them rule out certain things and confirm their course of treatment. For the biopsy the doctors went in through his jugular vein and threaded their way down to his liver to help themselves to a small sample of it.
They were looking for one of four things in the biopsy, but of the four, the two most likely culprits would be Hepatitis or GVHD. Doug came into the SCT negative for hepatitis, however we do know his donor did have it present at some point in his body. Not currently, but at some point which made it possible that Doug could now have it. I think in a previous post Doug talked about having to sign off on his European donor to acknowledge that Doug could get Mad Cow or Hepatitis from the transplant. A small price to pay if it beat the leukemia.
At 5pm today we got confirmation that his liver is showing mild signs of GVHD. The fact that it is mild is good. However, they did find that he does have some acute liver cell damage that is more than they would typically see with a mild GVHD. Currently they are not sure why he has this acute damage or what it is from. It could be in response to a drug or combo of drugs he has had to take in treatment or it could be something viral. The good news regardless, is that his liver function held stable today and did not climb more. They are looking at that as a sign that the Prednisone is helping to treat the GVHD and we should expect to see the liver enzymes continue to go down.
All in all the doctors feel confident the rash from earlier in the week, the nausea and vomiting as well as the confirmation of the liver showing GVHD is just that - Graft vs. Host Disease. To help with a base understanding of what it is, "GVHD is a common complication of allogenic SCT in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack." I have to credit Wikipedia with the explanation there. Basically as engraftment has been occurring, the German is fighting Doug's body since those cells know it is not their normal environment. It makes me wonder if they are attacking the liver hard as they recognize it is not an Octoberfest and bratwurst laden liver. Although for those of you who know Doug well, you know he likes good beer, and he used to have a serious penchant for "cheddarwurst" - perhaps one of the most disgusting meat products available. I think even the Germans would concur.
Right now Doug is sleeping. He has been sleeping about 20 hours a day although not necessarily restfully. He has still had nothing to eat since Saturday morning of last week and no IV nutrition due to how taxing it would be to his liver in its current state. He is extremely weak right now from all he has been through this past week and his weight is down to 163 lbs. As we all know, he is strong and will fight through all of this. He has a goal once this is all over to get back into doing triathlons. He is convinced his leaner frame will at least make the swim easier than his old huge muscular sinking thighs ever did!
Thursday, June 23, 2011
Day +14
It is Missy again with a quick update for everyone. A week has gone by since the last post, and Doug is still not felling great, but things seem to be moving in the right direction. The symptoms that plagued him last week seemed to get worse over the course of this past week. He had a rough beginning to this week with every side effect of the chemo and radiation rearing their ugly head. He had everything from rashes to swelling of the face and quite a few unmentionables occurring as well. For the most part he has lost what hair he had left, but he does have some super blonde peach fuzz left running down the middle of the top of his head. The good news is he always wanted a mohawk.
In spite of all of the side effects, his white blood cell count has started to slowly recover and hopefully the donors cells are starting to engraft. We have had a lot of people ask us how and when we will know if the transplant is working. At some point shortly after Doug gets discharged, the docs at Dana Farber will run a test called a Chimerism. This will show us how much of Doug's immune system is his and how much of his immune system is his donors. The ideal would be to see all donor.
On the side of discharge, we are guessing that at some point toward the end of next week, he will be set free from his 10X12 white wall room. Today a "care coodinator" stopped by and said she had him down for a Monday discharge. That seems a bit aggressive given his current state (he is still on IV nutrition, his wbc count is still low although increasing, and he still can not swallow whole pills) however, we have been told as quickly as all of these side effects come on, they can go away.
In re-reading this post, I am hoping Doug is up for the next blog. I'm good for the cut and dry update, but he is good for the flair. Kind of like our marriage!!
P.S. Maryland Mimi - can you e-mail Doug offline so he has your e-mail? We left it in VT!
In spite of all of the side effects, his white blood cell count has started to slowly recover and hopefully the donors cells are starting to engraft. We have had a lot of people ask us how and when we will know if the transplant is working. At some point shortly after Doug gets discharged, the docs at Dana Farber will run a test called a Chimerism. This will show us how much of Doug's immune system is his and how much of his immune system is his donors. The ideal would be to see all donor.
On the side of discharge, we are guessing that at some point toward the end of next week, he will be set free from his 10X12 white wall room. Today a "care coodinator" stopped by and said she had him down for a Monday discharge. That seems a bit aggressive given his current state (he is still on IV nutrition, his wbc count is still low although increasing, and he still can not swallow whole pills) however, we have been told as quickly as all of these side effects come on, they can go away.
In re-reading this post, I am hoping Doug is up for the next blog. I'm good for the cut and dry update, but he is good for the flair. Kind of like our marriage!!
P.S. Maryland Mimi - can you e-mail Doug offline so he has your e-mail? We left it in VT!
Thursday, June 16, 2011
Update from the Other Side
Missy here with a quick update for everyone. All will be thankful this is quick as I am not a fraction of the writer my husband is. Since the transplant, all has been moving along as to be expected. It has been an unpleasant week of new challenges, but Doug has amazing strength and will and still finds a way to find a reason to laugh or smile each day. The few first days post transplant were filled with a lot of fatigue, nausea and vomiting. The nausea was pretty much keeping him from doing much of anything except watching Sportscenter. His Dana Farber Schwinn has been sitting quietly in the corner of the room this week.
Yesterday morning, I woke up to a text at 4:00 am. saying that the nausea had finally subsided, at least momentarily, but he was now experiencing severe throat pain and sores in his mouth. Again, par for the course, but horrible nonetheless. Since yesterday the pain and sores have only worsened to the point where he can not talk, and has he has to regularly suction out his mouth and throat which are basically breaking down. It is a result of the compound effect of the chemo, radiation and a new drug they give him every few days to help with GVHD.
Tonight they were starting him on IV nutrition and he was going to get a PCA, which is 'Patient Controlled Analgesia', or for those of us only learning all these medical terms, it is basically a pump whereby he can administer his own pain medication. Not to worry though, it is controlled so he can only have so much every so often. He has been pretty lopped on the pain meds they are currently giving him through his IV, but his mind is sharp and quick, and he has been communicating as needed through his dry erase board.
His body overall is pretty fragile right now. The skin on his chest has been literally tearing off with the tape every time he takes a shower and has his ports covered over to keep them dry. The radiation treatment essentially made his skin like tissue paper. In spite of all of this he looks pretty good given all that he has been through.
Last weekend the kids were in Boston and were able to go to the hospital to see him. They had to go through the same routine as anyone else with wearing the mask and gloves. They had kids sized masks, but they had to wear the adult gloves. Brogan went in first and as confident as the doctors, walked to the foot of Doug's bed, put his hands down on it and said, "So Dad, how are you doing?" in the most gentle and sincere way. Ethan came in after Brogan had his visit, his little mask riding up into his eyes and the size small gloves enveloping his arms, and said, "Lighting McQueen says Kachow Daddy!"
Yesterday morning, I woke up to a text at 4:00 am. saying that the nausea had finally subsided, at least momentarily, but he was now experiencing severe throat pain and sores in his mouth. Again, par for the course, but horrible nonetheless. Since yesterday the pain and sores have only worsened to the point where he can not talk, and has he has to regularly suction out his mouth and throat which are basically breaking down. It is a result of the compound effect of the chemo, radiation and a new drug they give him every few days to help with GVHD.
Tonight they were starting him on IV nutrition and he was going to get a PCA, which is 'Patient Controlled Analgesia', or for those of us only learning all these medical terms, it is basically a pump whereby he can administer his own pain medication. Not to worry though, it is controlled so he can only have so much every so often. He has been pretty lopped on the pain meds they are currently giving him through his IV, but his mind is sharp and quick, and he has been communicating as needed through his dry erase board.
His body overall is pretty fragile right now. The skin on his chest has been literally tearing off with the tape every time he takes a shower and has his ports covered over to keep them dry. The radiation treatment essentially made his skin like tissue paper. In spite of all of this he looks pretty good given all that he has been through.
Last weekend the kids were in Boston and were able to go to the hospital to see him. They had to go through the same routine as anyone else with wearing the mask and gloves. They had kids sized masks, but they had to wear the adult gloves. Brogan went in first and as confident as the doctors, walked to the foot of Doug's bed, put his hands down on it and said, "So Dad, how are you doing?" in the most gentle and sincere way. Ethan came in after Brogan had his visit, his little mask riding up into his eyes and the size small gloves enveloping his arms, and said, "Lighting McQueen says Kachow Daddy!"
Friday, June 10, 2011
Transplant Complete
Last night at 9:10 PM, I was given my third chance at life. The transfusion took about 30 minutes and I held Missy's hand the whole time. I felt too crappy and was too tired to cry, but I probably would have if I could. Everyone said it would be an anti-climatic moment, but I didn't think so. As a family we have been dealing with this disease and all that comes with it since January. My family, friends, coworkers and people I don't even know have been praying for me and sending positive thoughts my way throughout. The raw emotions, heavy thinking, and anxious waiting for results are certainly not over, but last night that stem cell transplant was the lunge of faith for a solid handhold in my climb back to normal life. We won't know for a couple of weeks how solid that hold is. So we will go right back to praying, hoping and fighting, but now we are getting somewhere. If this works I'm cured. If not, well I guess we start over, but at least we are actively moving forward now.
Today I am still really nauseated, and fatigued, but feeling positive. The doctors seem to be very satisfied with how everything is going. As I said we will be watching things very closely over the next couple of weeks to see how well the new stem cells are becoming engrafted in my system, and if there seems to be any resistance. We will also be watching for any signs of infection. For my part I'll be trying to force myself to eat and and exercise in some capacity. But right now I'm going back to sleep.
Today I am still really nauseated, and fatigued, but feeling positive. The doctors seem to be very satisfied with how everything is going. As I said we will be watching things very closely over the next couple of weeks to see how well the new stem cells are becoming engrafted in my system, and if there seems to be any resistance. We will also be watching for any signs of infection. For my part I'll be trying to force myself to eat and and exercise in some capacity. But right now I'm going back to sleep.
Tuesday, June 7, 2011
How Not to Decorate a Christmas Tree.
Before I get into this post I'd like to make a request. If you read this thing regularly, please click the link on the right side of the page to become a follower. I know, I know who wants to be a follower? Just think of yourself as a private detective or something...anyhow it would be cool for me to see who's reading this, and I don't want to bore people with stories they've heard a million times.
So here we are at Dana Farber and things are running smoothy. I've finished my two rounds of chemo and four of the seven total body radiation (TBI) treatments. My main issues are nausea and puking. Not a big deal. I've been there before. Also my cheekbones and the lymph nodes in my neck are swollen and painful to the point where I couldn't eat last night...which was somewhat of a relief, because I didn't feel like eating anyhow. I have 3 more radiation sessions and then its transplant time.
The radiation room was a surprise and not what I expected coming to this world renowned cancer treatment center. As one walks, or in my case, is wheeled down the hall to the radiation therapy room things actually look pretty cozy and stimulating for the idle mind of a 5-year old. The walls are painted pink and blue and there are pictures of fairies and other happy characters on the wall. There's a pink crib in the corner with a unicorn in it. Then you turn the corner and realize you must be part of some elaborate seduction. This is not a happy place with Goofy and Pluto jumping over rainbows on the walls, this is the room Des Carte preformed his 17th century experiments on animals trying to prove that they could not feel pain. The table appears to be held together with an intricate web of twine. There is a large bicycle-type chain wrapping around the perimeter of the table for god knows what...I hope its just for looks, and not some kind of stretching device. A large metal crank that makes noises is used to raise and lower the table. The top of the table, the part a patient or subject lays on, is a thin layer of canvas, or more likely animal skin, stretched tightly over the frame. There is a large opening in the ceiling that apparently emits the radiation. Its covered with clear plexiglass which is velcro-ed and duck taped at random, to medium effect. Some of the plexiglass still sags away from its velcro, and hangs down waiting for gravity to finally swallow it. There is a similar gaping hole in the floor, also halfheartedly covered in plexiglass. This too emits radiation. Thankfully there is one modern amenity in the room...an ipod dock. I'm thinking of making my next playlist all medieval chamber music or funeral dirges, to really set the mood.
The radiation treatment itself is pretty uneventful. They made me lung blocks sized to match my lung size, and they put those on me before each treatment. The blocks only allow a small amount of radiation into my lungs, as lungs are especially fond of radiation, and tend to absorb it with more voracity than the rest of the body. So when they tell me its time, i drop my drawers, and hop up onto the table. Then they put the lung blocks on my chest and back, have me lay down. The technician kicks on the ipod and I'm left alone for 20 minutes. My mind immediately begins to wander....
One of the most prominent side effects of total body radiation is nausea, and i've been having my fair share. Today I was thinking about puking as I was lying there listening to my ipod blaring "Ship of Fools" by the Dead. Certain choice moments of puking i've had in my life swirled through my mind. There was the green bean stuck to the ceiling, and the small hole in my grade school desk, just big enough to fit my mouth around, but the one that really stands out happened just a few years ago in New York City.
I was granted a "kitchen pass" by my wife to go see my best friend Chad for the weekend in New York city. Furthermore it appeared (at first) the pass was given stipulation free, but I should have seen it coming. Missy and I have been together almost 20 years now, there's always a stipulation. This time it was that I had to take the train into the city. Not so bad I thought, until I learned it would take 9 hours. But I figured, at least I can go, and maybe I can catch up on work. Or I could get drunk in the bar car listening to cabaret music and playing poker with some rough looking characters. Then there was always the remote chance I would win big and have to escape by climbing on top of the train to fight some sour loser over my winnings. Probably not, but I'd never taken a long train ride and I began to think it might be fun, so I didn't even make a face or roll my eyes. I just showed up on time at the train station and bought my ticket. The train ride ended up being 11 hours. I never found the bar car. Instead I sat in my chair nearly the entire ride, vacating once to visit the snack car where I ate a microwaved cheeseburger that made ungodly noises in my belly the whole way. I returned to my seat and tried to work, but my stomach was just too loud, so I just sat there and listened to it.
Finally I arrived in the city exhausted but eager to make up for lost time. Chad met me at the station and we went back to his apt where he treated us to a wonderful assortment of cheeses and meats, jams, spreads, and jellies and good beer. I may have been somewhat over indulgent here, but I thought after the long train ride it was well deserved. Then he took me to a fancy bar that served martini's with Quail eggs. The eggs were surprisingly good. It made me sad to have just one. I'm not much of a martini drinker, but I figured when they have quail eggs in them its polite to have two. So I proudly bought the next round. After we left this bar I began to realize that somewhere along the line I'd definitely overdone it. Then we got into a cab. As you can imagine or even attest, cabs are a deathtrap for all those who might be on the verge of puking but probably could overcome it with some sensible walking, a cold shower, or water to drink. However, there was no time for that, Chad had a very busy agenda, so I fought for a window seat and got in. It seemed like the longest ride ever. Soon I was seeing quadrouple, and I knew it was only a matter of time. I refused to be that guy so I clenched my mouth closed as tightly as possible and prayed for a short ride. Finally we rolled to a stop, and to my surprise we appeared to have wound up in the country, or at least the suburbs. We were stopped next to a nice big stand of pine trees. My prayers were answered and then some. This place seemed like heaven to me. I didn't want to puke in front of everyone, so I simply jumped in the middle of those beautiful trees and let it fly. It was a huge relief and I was so happy at my good fortune that I stepped out of the trees exclaiming "what a perfect place to puke." And then I saw their eyes. They looked like a nice family. Probably out christmas shopping. Mom, dad, a couple kids, packages in their hands, all staring at me. The look they gave me was not one of anger or sadness, but more disappointment. The kind of look you give a puppy when he shits on the carpet. As I darted my eyes to avoid their judgment, I noticed a sign. "Christmas Trees for Sale".
So here we are at Dana Farber and things are running smoothy. I've finished my two rounds of chemo and four of the seven total body radiation (TBI) treatments. My main issues are nausea and puking. Not a big deal. I've been there before. Also my cheekbones and the lymph nodes in my neck are swollen and painful to the point where I couldn't eat last night...which was somewhat of a relief, because I didn't feel like eating anyhow. I have 3 more radiation sessions and then its transplant time.
The radiation room was a surprise and not what I expected coming to this world renowned cancer treatment center. As one walks, or in my case, is wheeled down the hall to the radiation therapy room things actually look pretty cozy and stimulating for the idle mind of a 5-year old. The walls are painted pink and blue and there are pictures of fairies and other happy characters on the wall. There's a pink crib in the corner with a unicorn in it. Then you turn the corner and realize you must be part of some elaborate seduction. This is not a happy place with Goofy and Pluto jumping over rainbows on the walls, this is the room Des Carte preformed his 17th century experiments on animals trying to prove that they could not feel pain. The table appears to be held together with an intricate web of twine. There is a large bicycle-type chain wrapping around the perimeter of the table for god knows what...I hope its just for looks, and not some kind of stretching device. A large metal crank that makes noises is used to raise and lower the table. The top of the table, the part a patient or subject lays on, is a thin layer of canvas, or more likely animal skin, stretched tightly over the frame. There is a large opening in the ceiling that apparently emits the radiation. Its covered with clear plexiglass which is velcro-ed and duck taped at random, to medium effect. Some of the plexiglass still sags away from its velcro, and hangs down waiting for gravity to finally swallow it. There is a similar gaping hole in the floor, also halfheartedly covered in plexiglass. This too emits radiation. Thankfully there is one modern amenity in the room...an ipod dock. I'm thinking of making my next playlist all medieval chamber music or funeral dirges, to really set the mood.
The radiation treatment itself is pretty uneventful. They made me lung blocks sized to match my lung size, and they put those on me before each treatment. The blocks only allow a small amount of radiation into my lungs, as lungs are especially fond of radiation, and tend to absorb it with more voracity than the rest of the body. So when they tell me its time, i drop my drawers, and hop up onto the table. Then they put the lung blocks on my chest and back, have me lay down. The technician kicks on the ipod and I'm left alone for 20 minutes. My mind immediately begins to wander....
One of the most prominent side effects of total body radiation is nausea, and i've been having my fair share. Today I was thinking about puking as I was lying there listening to my ipod blaring "Ship of Fools" by the Dead. Certain choice moments of puking i've had in my life swirled through my mind. There was the green bean stuck to the ceiling, and the small hole in my grade school desk, just big enough to fit my mouth around, but the one that really stands out happened just a few years ago in New York City.
I was granted a "kitchen pass" by my wife to go see my best friend Chad for the weekend in New York city. Furthermore it appeared (at first) the pass was given stipulation free, but I should have seen it coming. Missy and I have been together almost 20 years now, there's always a stipulation. This time it was that I had to take the train into the city. Not so bad I thought, until I learned it would take 9 hours. But I figured, at least I can go, and maybe I can catch up on work. Or I could get drunk in the bar car listening to cabaret music and playing poker with some rough looking characters. Then there was always the remote chance I would win big and have to escape by climbing on top of the train to fight some sour loser over my winnings. Probably not, but I'd never taken a long train ride and I began to think it might be fun, so I didn't even make a face or roll my eyes. I just showed up on time at the train station and bought my ticket. The train ride ended up being 11 hours. I never found the bar car. Instead I sat in my chair nearly the entire ride, vacating once to visit the snack car where I ate a microwaved cheeseburger that made ungodly noises in my belly the whole way. I returned to my seat and tried to work, but my stomach was just too loud, so I just sat there and listened to it.
Finally I arrived in the city exhausted but eager to make up for lost time. Chad met me at the station and we went back to his apt where he treated us to a wonderful assortment of cheeses and meats, jams, spreads, and jellies and good beer. I may have been somewhat over indulgent here, but I thought after the long train ride it was well deserved. Then he took me to a fancy bar that served martini's with Quail eggs. The eggs were surprisingly good. It made me sad to have just one. I'm not much of a martini drinker, but I figured when they have quail eggs in them its polite to have two. So I proudly bought the next round. After we left this bar I began to realize that somewhere along the line I'd definitely overdone it. Then we got into a cab. As you can imagine or even attest, cabs are a deathtrap for all those who might be on the verge of puking but probably could overcome it with some sensible walking, a cold shower, or water to drink. However, there was no time for that, Chad had a very busy agenda, so I fought for a window seat and got in. It seemed like the longest ride ever. Soon I was seeing quadrouple, and I knew it was only a matter of time. I refused to be that guy so I clenched my mouth closed as tightly as possible and prayed for a short ride. Finally we rolled to a stop, and to my surprise we appeared to have wound up in the country, or at least the suburbs. We were stopped next to a nice big stand of pine trees. My prayers were answered and then some. This place seemed like heaven to me. I didn't want to puke in front of everyone, so I simply jumped in the middle of those beautiful trees and let it fly. It was a huge relief and I was so happy at my good fortune that I stepped out of the trees exclaiming "what a perfect place to puke." And then I saw their eyes. They looked like a nice family. Probably out christmas shopping. Mom, dad, a couple kids, packages in their hands, all staring at me. The look they gave me was not one of anger or sadness, but more disappointment. The kind of look you give a puppy when he shits on the carpet. As I darted my eyes to avoid their judgment, I noticed a sign. "Christmas Trees for Sale".
Friday, June 3, 2011
Its Game Time
Today I begin a week long preconditioning regiment before receiving a stem cell transplant next Thursday; my new birthday. Frankly my mind has been a mess this past week. Thoughts buried shortly after my diagnosis have emerged again, and I've been carrying them around like a ton of bricks. This past week I've gone through a range of emotions. I've felt really depressed, angry, sad, hopeful, and joyful. At times I've found myself feeling like I need to tie up loose ends just in case. Other times I've focused on fully engaging myself in certain moments...striving to live in them completely. I had hoped that having cancer might eliminate my moodiness. However there have been times this week when I've been so pissed I had to lock myself in my room for hours and try to sleep. The reasons are difficult to pin down. One night Missy said to me during a long conversation, "If you're worried about dying do you really want to spend your last week being so angry?" It was a pretty low moment. She was right. I hadn't said more than two words to anyone for days, and just walked around the house scowling. How could I treat her and the rest of my family with anger at a time when I should be letting them know how much I care about them?
Doctors all along have felt the need to explain to me in a variety of styles, ranging from blunt to rude, that the transplant is a very serious procedure and I may not survive. Each time I hear this I want to tell the doctors to fuck off. I don't know if they think its helpful for me to hear, or if they are trying to cover their own asses, but for me hearing those words is simply demoralizing. I know what the risks are, but I'd rather focus on fighting and winning, not dwell on the possibility of losing. Yet what the hell am I doing right now in this blog? Perhaps I just need to get all of this off my chest.
I am not afraid of dying. In a physical sense, death would merely be a relief from the nastiness of this disease and its treatment. Instead the thought of dying fills me with the absolute deepest sense of sadness I have ever felt. The thought of watching Brogan and Ethan's first T-ball game from bleachers on "the other side" is so unbearable I have a hard time even writing it. The possibility of missing out on my remaining years with Missy rips my heart to pieces. I want to go on family vacations with my boys, play catch and climb mountains with them. I want more time with my family and friends. For God's sake I'm only 36 years old. Life is just getting started. I want to grow old.
I wonder, can a person's will to live be so strong they can defy death? Should the circumstance present itself will I be able to choose to fight and live? Does God make complete plans for us, or are we presented with challenges and left to our own devices? Who knows the answers? Not me. All I know is that I am not ready to call it quits, and if death comes knocking I will stubbornly refuse to open the door. I've been told by more than one person that I'm pretty stubborn.
People often refer to my cancer with hate and anger, but I don't feel a sense of ill will towards the cancer. The treatment has certainly been rough at times, but to me the cancer itself is in many ways a positive entity; one that I actually care about. Certainly when the time comes I will cordially ask it to leave my body and not return. But I feel it has been a necessary part of my life. Something to be experienced as part of my growth as a human being...another journey to learn from. It has truly helped my family to grow stronger, and wiser, and I hope it will instill in my boys a stronger value for life as they get older and understand more.
Another burden of the mind that's resurfaced from time to time is the need to know why this happened. Yet "why" is such a dangerous question, and I struggle not to engage it. I will never fully know the answer, yet it's difficult not to dwell on. Is this payback for things I've done wrong in my life? Is this a totally random event? When the urge to produce an answer overcomes my resistance in looking for one, I like to think that I am making a necessary sacrifice for myself and my family. I'm thankful that I'm the one making it. Before my diagnosis, our family was always too busy, or too tired; focusing too much on material things. Now what really matters most is so clear to us. It all comes down to love. Love of family. Love of friends. Love of Self. That's what guides us now.
Anyhow, as for what's to come...here's a brief rundown. Today I will have bilateral lines inserted into my chest. These will be used both to draw blood and administer medicine, chemo, stem cells, etc. After the lines are placed I will begin a two day regimen of chemo, and then 4 days of total body radiation. On Thursday, I will only get one dose of radiation and then I will receive the stem cell transplant. This s when the game kicks into high gear. Since the chemo and radiation will have completely wiped out my immune system, infection will be a very dangerous enemy. Additionally there is the possibility of "graft versus host" disease. This is when the new cells perceive the rest of my body as foreign and begin to attack it. The doctors like to see a low level of graft versus host disease, because it lets them know things are working, however they don't want it to get out of hand, as it can be fatal. The third concern is that the transplant is ineffective and the cancer returns. In which case I would have to go through all of this again. I'm really hoping it works the first time!
Despite some of the negative things I've just written about, I feel very confident that I will get through this successfully and get back to life with my family and friends. I've felt this way from the beginning and the feeling has never wavered. I'm looking forward to getting into the game and will try to keep up with the blog posts as the week progresses. Thanks to all of you who have been so thoughtful and supportive through my treatment.
Peace.
Friday, May 20, 2011
My Lucky Socks
Years ago my good friend Brian, who races on a Cannondale bike team asked me if I'd like to try Cyclocross racing. Cyclocross bikes are basically road bikes with brakes and tires made for off road riding. It sounded like fun to me, the only problem was that I didn't have a Cyclocross bike and Brian is a lot smaller than I am, so he didn't have a bike I could borrow. I was going to have to ride my Trek Mountain bike, which was made in nearly the same era as the Schwinn Comp. The Trek was a beast that made all sorts of noises, and sometimes skipped gears for no apparent reason. Nonetheless I thought it would be cool to check the sport out and see if I liked it enough to invest in a real Cyclocross bike.
The day of the race arrived and I met Brian at the course, quickly realizing that perhaps I was a bit out of my league. There were guys riding bike trainers next to their car, drinking fancy sports drinks. Some guys had 2 or 3 bikes with them and were trying to decide which was best suited to the course. Meanwhile pulling into the parking lot with the Trek ignobly displayed on top of my car, I felt like I had arrived in the Oscar Meyer Wiener mobile. I parked as fast as I could and quickly pulled the bike down from the top of my car. I found Brian, who took one look at me and said, "Is that what you're wearing for the race?" I had on a pair of cargo shorts and a t shirt. "Um...yup" Feeling bad for me Brian offered to let me borrow one of his extra uniforms. The only problem is that Brian is a good 70 pounds lighter than me and a bit shorter. It was not going to be easy squeezing into his little spandex unitard. I took the getup anyhow and got into my car to put it on. By the time I came out I was dripping in sweat from all the effort, but I got it on. One look at Brian's face told the story, I looked ridiculous. Thankfully, Brian is a loyal friend and he stuck with me. We went for a warm up ride, where he got to hear first hand the symphony of squeeks, clicks, and wheezes my bike made. Brian told me I'd be fine, and that the race would be fun. Finally it was time for the race to begin.
We rolled up to the starting line and immediately the comments began. "Sweet Trek man!". "Yah its my training bike." I said. The starting gun fired and I put all of my strength into taking off. I wanted to blast off and show those guys that I could hold my own despite the bike. Then it happened. I felt and heard a sickening rip in the ass of my uniform right up my back. This would not have been so bad, had I decided to wear something under the uniform, but I was trying to conserve space. I immediately heard a mix of laughter and horror from behind me as riders became aware of my wardrobe malfunction. But I'd come this far and I wasn't about to quit, so I pedaled even harder (standing up) hoping to get in front of the entire pack. Perhaps this was the advantage I needed to do well in the race. Nope. Halfway through the first lap I could tell I was close to last place. At one point I heard a shaky voice that sounded like someone's grandfather say, "Son you've set a very nice pace, but now I have to pass you". When he went by I could see that he probably was someone's grandfather. Needless to say, I did not win the race.
After the race I became something of an honorary member of the team, and was able to get my own uniform. Including the lucky socks I wore yesterday to my bone marrow biopsy. Be it luck or science I'm happy to report that the biopsy showed I was at 6% blast cells, which is basically remission! I'm ready for transplant. The Nexavar is working better than expected. Yes!
The day of the race arrived and I met Brian at the course, quickly realizing that perhaps I was a bit out of my league. There were guys riding bike trainers next to their car, drinking fancy sports drinks. Some guys had 2 or 3 bikes with them and were trying to decide which was best suited to the course. Meanwhile pulling into the parking lot with the Trek ignobly displayed on top of my car, I felt like I had arrived in the Oscar Meyer Wiener mobile. I parked as fast as I could and quickly pulled the bike down from the top of my car. I found Brian, who took one look at me and said, "Is that what you're wearing for the race?" I had on a pair of cargo shorts and a t shirt. "Um...yup" Feeling bad for me Brian offered to let me borrow one of his extra uniforms. The only problem is that Brian is a good 70 pounds lighter than me and a bit shorter. It was not going to be easy squeezing into his little spandex unitard. I took the getup anyhow and got into my car to put it on. By the time I came out I was dripping in sweat from all the effort, but I got it on. One look at Brian's face told the story, I looked ridiculous. Thankfully, Brian is a loyal friend and he stuck with me. We went for a warm up ride, where he got to hear first hand the symphony of squeeks, clicks, and wheezes my bike made. Brian told me I'd be fine, and that the race would be fun. Finally it was time for the race to begin.
We rolled up to the starting line and immediately the comments began. "Sweet Trek man!". "Yah its my training bike." I said. The starting gun fired and I put all of my strength into taking off. I wanted to blast off and show those guys that I could hold my own despite the bike. Then it happened. I felt and heard a sickening rip in the ass of my uniform right up my back. This would not have been so bad, had I decided to wear something under the uniform, but I was trying to conserve space. I immediately heard a mix of laughter and horror from behind me as riders became aware of my wardrobe malfunction. But I'd come this far and I wasn't about to quit, so I pedaled even harder (standing up) hoping to get in front of the entire pack. Perhaps this was the advantage I needed to do well in the race. Nope. Halfway through the first lap I could tell I was close to last place. At one point I heard a shaky voice that sounded like someone's grandfather say, "Son you've set a very nice pace, but now I have to pass you". When he went by I could see that he probably was someone's grandfather. Needless to say, I did not win the race.
After the race I became something of an honorary member of the team, and was able to get my own uniform. Including the lucky socks I wore yesterday to my bone marrow biopsy. Be it luck or science I'm happy to report that the biopsy showed I was at 6% blast cells, which is basically remission! I'm ready for transplant. The Nexavar is working better than expected. Yes!
Thursday, May 19, 2011
A Fungus Among Us
Today is a big day. I have two tests to get through. The first is a bronchoscopy, followed by a bone marrow biopsy. On Monday I had a CT Scan that showed some very subtle signs of a potential infection in my lungs. After treating me with broad range IV antibiotics to no avail, the doctors are now thinking the fevers are due to a fungal infection. I'm imagining mushrooms growing on the inside of my lungs.
So what to do when there's a fungus among us? Why thread a camera up my nose, down my throat, behind my voice box and into my lungs to have a look around of course. Then for good measure fill up my lungs with saline solution and aspirate it.
Immediately after the bronchoscopy they'll flip me over like a fish and do the bone marrow biopsy. The bone marrow biopsy will tell us if the Nexevar (chemo) is working. The ideal result would be remission, or under 5% blast cells, though even if I'm down from 64% blast cells, which is where I was after the last biopsy, it will be considered a positive result. I will post the initial results this afternoon. Keep your fingers crossed!
Monday, May 16, 2011
A little bit of the old In and Out
It was a perfect throw. The speed and accuracy of which left me standing motionless in shock for quite some time. Then the reality of what had been hurled at my face began to sink in. It was warm, and wet and stinky. It made a sickening noise as it stung my face. I could hear a shriek of fiendish laughter and the pitter patter of little feet taking off down the hall as Brogan's pee soaked underwear fell from my face to the floor. Welcome home Daddy! This was yesterday during my 6 hour stint at home. A couple hours later I had the chills, and then a 103 fever.
So here I am, back in the hospital. While I know there is no connection between my face full of pee soaked cotton and the fever, it certainly is not cheering me up here. The doctors still aren't sure what the cause of these fevers is, so we are playing around with different IV antibiotics. It's uncertain how long they will keep me this time, based on my poor performance during release yesterday, but I'm hoping to be out in time for Wakefield's show in Burlington on Saturday. If you're going to be in the Burlington area on Saturday afternoon, check it out. The show is outside at Red Square from 5-8 PM. The band is called Cat Under the Stars.
So far it does seem that this latest form of chemo is helping. We will get a much clearer picture on Thursday when I have yet another bone marrow biopsy. At this point my ass resembles that of a pie thief. If everything looks good and the doctors feel comfortable moving forward with the transplant I will head down to Dana Farber on June 3rd, to begin preconditioning for transplant. If things look like they are moving in the right direction, but are not quite at the level we want them, the transplant might get pushed back a bit, so that I can stay on the Nexevar a little longer. We shall see.
So here I am, back in the hospital. While I know there is no connection between my face full of pee soaked cotton and the fever, it certainly is not cheering me up here. The doctors still aren't sure what the cause of these fevers is, so we are playing around with different IV antibiotics. It's uncertain how long they will keep me this time, based on my poor performance during release yesterday, but I'm hoping to be out in time for Wakefield's show in Burlington on Saturday. If you're going to be in the Burlington area on Saturday afternoon, check it out. The show is outside at Red Square from 5-8 PM. The band is called Cat Under the Stars.
So far it does seem that this latest form of chemo is helping. We will get a much clearer picture on Thursday when I have yet another bone marrow biopsy. At this point my ass resembles that of a pie thief. If everything looks good and the doctors feel comfortable moving forward with the transplant I will head down to Dana Farber on June 3rd, to begin preconditioning for transplant. If things look like they are moving in the right direction, but are not quite at the level we want them, the transplant might get pushed back a bit, so that I can stay on the Nexevar a little longer. We shall see.
Saturday, May 14, 2011
Back in Prision
I'm back in the hospital again because of mild fevers. Anytime I spike a fever over 101.4, I have to come into the hospital for blood cultures. The doctors aren't really sure what's causing the fevers, but they are going to start eliminating potential causes by taking out the port in my chest that's been there since February 3rd. The rationale is that its a possible source of infection and would have to be taken out anyway when I get to Dana Farber because they like to use their own. In fact they install 2, one on either side. I can only imagine the amount of scars I'll be left with when all of this is finished
Needless to say I really don't want to be here, and I can't wait to get out. I was doing really well at home and having a great time living a somewhat normal existence with my family. On Thursday I went for a 3 mile walk and felt strong. I would love to start running again but the drug I'm on now causes the skin on my hands and feet to break down and get chaffed very easily. Already all of my fingertips are raw, and the joints in the my thumbs. The ball of my left foot is also getting pretty tender.
Anyhow now I'm in the hospital and feeling the progress I've made in the past few weeks slip away. The hospital bed is an insidious, entropic wasteland. If you're not careful you will get stuck in it. People try to do everything for you while you lie there, so there's never a need to get out of the bed. When no one else is around things on the other side of the room look like they are impossibly far away. Surely too far to get out of bed for. Sometimes I lay there for half an hour trying to muster the will to get up and close the shades so I can sleep a little longer in the morning. Its definitely time to get out of here.
Tuesday, May 3, 2011
Quick Update
Just a quick update to fill you in on the details of the past couple of weeks. I was able to come home from the hospital for Easter, which was awesome. The Wednesday following Easter I drove down to Dana Farber for a series of tests and consults in preparation for my transplant. While there I was informed that the 12 out of 12, 53 year old female donor has been replaced. They couldn't tell me why, but I now have a 9 out of 10, 44 year old male donor, who may or may not have been exposed to Mad Cow Disease. All this really means is that he is European (they said he's probably German, but I'm not supposed to know that). I'll post more about this trip later.
Last Monday I had another Bone Marrow biopsy, and unfortunately it came back pretty hot. 64% blasts. 5% Blasts is considered remission. Since it appears that my disease may be refractory, meaning its resistant to standard chemo treatments, the doctors are going to try a drug called Sorafenib. Its an oral pill, that I can take at home. I've been in a lot of pain again so I'm back on the Oxycodone and Oxycontin. The Sorafenib treatment should last 3 weeks, which is going to push my transplant date back by at least a week if this drug gets the blasts under control.
Lastly on Sunday night as I was falling asleep and noticed my heart was racing with what seemed to be an irregular heartbeat. Thankfully my mom was still in Vermont and able to drive me to the Emergency Room, since nothing happens during normal daylight hours and our kids were off in their own lala land. When I got there they determined I was in Atrial fibrillation, which means I had an irregular and rapid heart rate - yet another thing typical of older people. With a little help from an IV drug called Cardizem and some mental focus (including Missy's breathing techniques that as mentioned earlier may have helped her in labor but did nothing for a man with leukemia induced muscle spasms) I was able to bring my heart rate down and into a regular cadence. The doctors aren't sure what caused this, but one theory is that my blood counts were way too low. I got two units of blood yesterday and am feeling good this morning. Now I'm off to the clinic once again for an echocardiogram, to see if there is any obvious damage to my heart.
Last Monday I had another Bone Marrow biopsy, and unfortunately it came back pretty hot. 64% blasts. 5% Blasts is considered remission. Since it appears that my disease may be refractory, meaning its resistant to standard chemo treatments, the doctors are going to try a drug called Sorafenib. Its an oral pill, that I can take at home. I've been in a lot of pain again so I'm back on the Oxycodone and Oxycontin. The Sorafenib treatment should last 3 weeks, which is going to push my transplant date back by at least a week if this drug gets the blasts under control.
Lastly on Sunday night as I was falling asleep and noticed my heart was racing with what seemed to be an irregular heartbeat. Thankfully my mom was still in Vermont and able to drive me to the Emergency Room, since nothing happens during normal daylight hours and our kids were off in their own lala land. When I got there they determined I was in Atrial fibrillation, which means I had an irregular and rapid heart rate - yet another thing typical of older people. With a little help from an IV drug called Cardizem and some mental focus (including Missy's breathing techniques that as mentioned earlier may have helped her in labor but did nothing for a man with leukemia induced muscle spasms) I was able to bring my heart rate down and into a regular cadence. The doctors aren't sure what caused this, but one theory is that my blood counts were way too low. I got two units of blood yesterday and am feeling good this morning. Now I'm off to the clinic once again for an echocardiogram, to see if there is any obvious damage to my heart.
Wednesday, April 20, 2011
Thank You Easter Bunny
Last night I tried (unsuccessfully) to blog while under the influence of Oxycodone. After crafting the opening sentence no less than five times I gave up. I might have continued to push if any of these attempts were at least consistent in topic. Instead they ranged from the problem with Easter Bunnies that don't talk, to the worst shart of my life. I was unable to get any of the topics out of first gear, so I just gave up and took an Ambien. I woke up this morning with little recollection of the night before and the weird sensation that I'd gotten up in the middle of the night to ride the Schwinn. The nurse informed me that we had wild storms last night; i just smiled and looked over at my bike.
My undoing seems to be the result of overzealous exercising. Yesterday, despite getting winded on trips to the bathroom, I did 25 dips, 25 pushups and 30 crunches in the morning, later a couple of laps around the hospital, and finally I rode the Schwinn Comp for 25 minutes. Each effort began in severe reluctance and ended out of breath, but the voice in my head kept reminding me that I'm determined to keep eating and exercising through all of this.
I really like listening to bluegrass when I ride bikes. The rhythm, typically based on that of a train, makes me peddle faster. It's irresistible; I can't keep myself out of rhythm with the music. This habit used to be rather embarrassing when Missy and I had a gym membership. I'd start doing squats, and inevitably something like Nelly would come on the radio. I'd find myself powerless against squatting up and down to every beat of "It's Getting Hot in Here". Anyhow yesterday I set the ipod to the Weary Boys, and began to whip up a frenzy on the bike. Their preferred tempo tends to mimic that of a high speed commuter train as oppossed to a slower more sensible cargo train. When I got off the bike, it felt like a small man had been punching me in the stomach with each peddle stroke for the past 25 minutes. Taking a deep breath, which I really felt like doing after this effort, hurt even more. Gasping for air, I called the nurse, who called the doctor, who shook her head and told me to take it easy next time.
Today I'm feeling slightly better. I still can't take a deep breath, but no need for painkillers. Needless to say I've gotta switch bluegrass bands for a while. The good news is that while I needed yet another blood transfusion due to low Hemoglobin, my platelets are up and my WBC (white blood cells) are up as well. Once my counts return to normal I can go home. Perhaps I'm rounding the corner? I'd love to get home in time for Easter, but its looking more like my reprieve will come a few days after.
I really like listening to bluegrass when I ride bikes. The rhythm, typically based on that of a train, makes me peddle faster. It's irresistible; I can't keep myself out of rhythm with the music. This habit used to be rather embarrassing when Missy and I had a gym membership. I'd start doing squats, and inevitably something like Nelly would come on the radio. I'd find myself powerless against squatting up and down to every beat of "It's Getting Hot in Here". Anyhow yesterday I set the ipod to the Weary Boys, and began to whip up a frenzy on the bike. Their preferred tempo tends to mimic that of a high speed commuter train as oppossed to a slower more sensible cargo train. When I got off the bike, it felt like a small man had been punching me in the stomach with each peddle stroke for the past 25 minutes. Taking a deep breath, which I really felt like doing after this effort, hurt even more. Gasping for air, I called the nurse, who called the doctor, who shook her head and told me to take it easy next time.
Today I'm feeling slightly better. I still can't take a deep breath, but no need for painkillers. Needless to say I've gotta switch bluegrass bands for a while. The good news is that while I needed yet another blood transfusion due to low Hemoglobin, my platelets are up and my WBC (white blood cells) are up as well. Once my counts return to normal I can go home. Perhaps I'm rounding the corner? I'd love to get home in time for Easter, but its looking more like my reprieve will come a few days after.
Which brings me to the Easter Bunny. The Easter Bunny is creepy; plain and simple. Right up there with mimes and clowns. So I don't blame my kids at all for being freaked out by him/her/it. In fact, as I'll explain later, I encourage them to be skeptical. I relate this story as it was described to me by my wife, who took the boys to the mall last weekend for their first introduction to the Easter Bunny.
While Brogan (4 years old) attached himself with a vice-grip to the back of Missy's leg at the mere sight of the Easter Bunny, Ethan (2 years old) ran right up and introduced himself with confidence. "Hi Easter Bunny"...nothing. Just a silent wave from a fully grown stuffed animal wearing the same freaky smile he had on his face 10 minutes ago. Still Ethan gave it one more try. "Hi Easter bunny"...crickets, a blank stare and a hollow smile. That's when poor Ethan decided it was time to run. And I don't blame him. I would have run too. I once saw an episode of Cold Case where people in furry animal suits got together to rub on one another. Anyhow, for some reason Ethan's distrust became Brogan's inspiration. I like to think it's because Brogan has embraced the role of Big Brother Superhero. He stepped out from behind mom's leg and boldly proclaimed that he, despite the obvious danger, would have his picture taken with the Easter Bunny. He gingerly climbed onto the bunny's lap and forced a few twisted smiles towards the camera, then hopped off as quickly as he could. As they left the mall, Ethan, perhaps emboldened by his brother's bravery, tried one more time to converse with the bunny...who remained cold as ice, smiling, and mute. Thank you Easter Bunny.
Friday, April 15, 2011
The Climb
My spirits are a bit low today. No particular reason other than feeling a bit caged in my hospital room. So instead of getting into some of the technicalities of my induction therapy, which I had planned on doing, I'm gonna ruminate.
A day or so after the diagnosis I began to see cancer as more than a disease. It still weighed heavily on me as a burden, but there was another perception materializing. A few years ago, I did a winter ascent of Gray's Peak in Colorado alone. Its not a very technical climb, nor would it be considered difficult for an experienced mountaineer, but it still carried with it enough risk to make me acutely aware of my own mortality. One moment reigns especially clear in my memory. There is a portion of the route about 1500 feet below the summit that traverses a very steep slope for a 1/4 mile or so. I stuck with the traverse for a while though I was feeling increasingly exposed. Looking down I could see the path of my potential fall, which would carry me a long way into the valley below. To make matters worse I still had my snowshoes on, which I should have replaced with crampons long before. Traversing a steep slope in snowshoes is fairly awkward, but it would not be safe to sit down where I was and change gear. Though wiped out and feeling the altitude, I made the decision that kicking steps straight up the mountain, rather than following this exposed traverse in snowshoes was a safer proposition. So that's what I did.
Now after my diagnosis I am aware once again of my own mortality. I see the road ahead of me as parallel to my ascent of Gray's Peak. At the outset of my climb I was pretty full of doubt, and honestly there was some fear. I hiked into the woods alone around 4:30 PM to an area I'd never been and set up my tent in the dark as a snow fell steadily. In the morning I'd be embarking on a route I'd never seen before, with the knowledge that there was risk of avalanche. Arriving from the relatively low altitude of Vermont only the day before, I wasn't sure how I'd feel at higher altitude. As I began the route the next morning, I had to wade through thigh deep snow, and was exhausted almost immediately. I was only guessing at times which way the route was supposed to go. On occasion I ventured way out of my way, unnecessarily expending energy. But as I gained altitude the route revealed itself. It became clear that completing it and summiting depended only on my will to succeed. I believe surviving cancer can be an equally challenging and perhaps satisfying journey. There is doubt, there is fear, and there are things beyond my control, but I still have control of my will. When the will is tested the true measure of a man is revealed.
I thought a lot about that climb in the early days of my diagnosis and resolved that I have the will to beat this thing, though there have been times when I've questioned myself. A few weeks ago I was sharing a hospital room with a man who was much sicker than I, our beds separated by only a then curtain. I overheard him explaining to his daughter that while she understood it was time to let him go, he still needed to convince his wife. He mused with satisfaction that he had lived a good life, raised his children, and felt no regrets. As I lay there with my head pounding from a chemo induced headache, feeling the weight of all that's happened, and gazing at the long stretch of road ahead, I felt envious. This man no longer was bound to life and the struggle to survive. He could leave it when he was ready; no strings attached. It would be easy. The nurses would give him all the painkillers he needed to slip quietly and comfortably into death. For me this was/is not an option. I'm still young. I have two little boys and plans to fulfill with my wife. My parents are still alive and I still have grandparents. But in the thick of feeling like shit its easy to envy a man with an easy way out. Now 3 weeks later, as I sit here pain free and feeling good, the envy is gone. I'm not sure what's become of my old roommate, but I hope everything is working out the way he wants it to. I am unfinished.
Thursday, April 14, 2011
Day 70
So today is day 70 since my diagnosis. I'm in the hospital riding out my 3rd round of chemo and I'm feeling great. I am at what the doctors are calling my low point, meaning all of my blood counts including my immune system are at 0 or close to it. I've been receiving regular platelet and blood transfusions. I have been reacting to the platelets with hives and swelling in my face. If you've ever seen the movie Hitch, with Will Smith, you'll get the idea. Actually its not that bad.
I have a dry erase board in my room where I write my blood count goals and other health related goals, like "no fever". The big one is to keep my platelets above 10 so that I can ride my exercise bike and go for walks. Yesterday my mental focus on keeping my platelets over 10 worked. Which is awesome because typically everyday I'll get a platelet transfusion and by the next day they are all gone. I kept them at 14 and had a good session on the bike. Its a Schwinn Aerodyne Evolution Comp. As you can see from the photo, this is a high performance machine. I'm pretty sure the 'comp' stands for competition model. When I ride it creates a torrent of wind and noise that wrecks my mom's hairdo. So far I can do 30 minutes...hoping to get up to an hour before I leave here.
Remarkably, despite the chemo, I still have my hair. I was kind of hoping to lose it, at least in certain places, but apparently its there to stay. I've lost 40 lbs since all this began, but I've been working hard on eating even when I don't want to in preparation for the stem cell transplant, and I've gained 6 lbs back.
For those of you who haven't heard I have a donor lined up. Apparently she's 53 years old and a perfect 12 out of 12 match. While I would prefer to have 21 year old male viking, stem cells are stem cells. My mom says I'm going to get hot flashes now. Anyhow, the plan as it stands now is to head to Dana Farber in 4 weeks for the transplant. I can't wait to get that over with.
I have a dry erase board in my room where I write my blood count goals and other health related goals, like "no fever". The big one is to keep my platelets above 10 so that I can ride my exercise bike and go for walks. Yesterday my mental focus on keeping my platelets over 10 worked. Which is awesome because typically everyday I'll get a platelet transfusion and by the next day they are all gone. I kept them at 14 and had a good session on the bike. Its a Schwinn Aerodyne Evolution Comp. As you can see from the photo, this is a high performance machine. I'm pretty sure the 'comp' stands for competition model. When I ride it creates a torrent of wind and noise that wrecks my mom's hairdo. So far I can do 30 minutes...hoping to get up to an hour before I leave here.
Remarkably, despite the chemo, I still have my hair. I was kind of hoping to lose it, at least in certain places, but apparently its there to stay. I've lost 40 lbs since all this began, but I've been working hard on eating even when I don't want to in preparation for the stem cell transplant, and I've gained 6 lbs back.
For those of you who haven't heard I have a donor lined up. Apparently she's 53 years old and a perfect 12 out of 12 match. While I would prefer to have 21 year old male viking, stem cells are stem cells. My mom says I'm going to get hot flashes now. Anyhow, the plan as it stands now is to head to Dana Farber in 4 weeks for the transplant. I can't wait to get that over with.
How it all began
If only I had TMJ
Mid January 2011, things started getting weird. I wasn't feeling incredibly motivated at work. I felt tired and unfocused. Then one night I started feeling an aching pain in my cheekbones and teeth. The pain began to radiate down my neck. I had just been to the dentist and thought, "hmm maybe I have an infection". Of course Missy caught me standing in front of the mirror with my mouth open as wide as it could go (which those of you who know me can verify...is pretty wide. Think tennis ball) trying to peer inside my mouth. To my horror I noticed a small black spot on my gum. The next morning I went to the walk in clinic to ask them about the pain in my face, the mysterious black spot, and also to have them check my urine, which Missy kept reminding me was really frothy (like a head of cheap beer in the toilet)...sorry for the details. They told me they had no idea what the black spot was, and if anything I had TMJ, and that my urine was fine. They gave me some pain killers and I went on my merry way. I made an appointment with the dentist just to be sure. He told me that I didn't have TMJ, but I should stop eating bagels or anything really chewy for a while to give my jaw a break. He said the black spot was an amalgam tatoo, which often gets left behind by dental tools. Ahh, my first tattoo. Not quite a bad ass eagle across my chest, but a tattoo all the same. As I left his office feeling somewhat relieved, i thought about buying a motorcycle...with a sidecar.
Crazy...
Soon after the trip to the clinic, I began experiencing sharp pain in my lower back that radiated around my hips into my groin and down the inside of my leg to my knee. In fact I remember limping into the dentist office, never imagining that the pain in my face and the pain in my back could be connected. The back pain I was sure I had an explanation for. Over the holidays I had done a lot of snowshoeing. One particular day I carried Ethan on my back, and hauled Brogan in a sled, a mile up the ridge behind our house. Shortly after that Brian and I did a 2.5 hour slog in the Hinesburg town forest with Brogan on my back. And not long after that another 5 hour jaunt with Jimmy. My thought was that I must have aggravated my old nemesis, sciatica. I went to the doctor, and he agreed. He prescribed a steriod and some more pain killers, then he sent me home to ride it out. Next came the most painful night of my life.
The steroid and painkillers seemed to be working after just one day, and I was feeling pretty good. In fact I demonstrated to the family just how well I was feeling with a pretty sweet dance, replete with every hip gyration I could muster. Later Missy and I put the kids to bed and were settling in to watch a movie when I began to feel slight spasms of pain in my back. Over the course of an hour I turned into a groveling wreck. My whole body was spasming with pain. I begged Missy to take me to the hospital or call an ambulance. However after three weeks of me complaining of one pain or another and going to the emergency room, dentist, and doctor almost routinely, we both were beginning to think I might be going crazy. She refused to take me to the hospital or call an ambulance. Instead she informed me that she had been through child birth before and that we were going to get control of this pain through breathing exercises. We got down on the living room floor and did breathing exercises through the night. It never really worked, and finally at 9:00 the next morning we made the excruciating drive to the hospital. I was balled up and crying when I walked through the door, and one of the nurses said to me, "So is this your first time with kidney stones" I said I don't think that's it. I don't remember too much after that other than a nurse asking me what kind of cocktail I'd like. Whatever she pushed into my vein took the wind out of me and then knocked me into sweet painfree la la land. When I finally woke up, they sent me home with still more pain killers and valium, but no explanation. Funny thing is all of the places I visited were part of the same network, so everyone was able to see all the drugs that had been given to me in the last 3 weeks, but no one seemed to mind or was concerned to look further.
The Breakthrough
Missy made yet another follow up appointment with my doctor (I was basically incapacitated by this time) and got signed up for physical therapy. Still no real investigation. We all thought it was due to overexertion and sciatica. The first PT session actually seemed to help some, but on the day of the third session I was in severe pain, not in my lower back but my upper back. The pain was radiating around to my chest, and I was having trouble breathing. I also had very tender spots on my shoulders. I mentioned this to the physical therapist and he looked at me with what was now a familiar look of disbelief, but he had me do a few movements and then stopped me and said, "I can't help you with this, its not mechanical. You need to go back to your doctor."
Already in severe pain, and having trouble breathing I decided enough is enough. I drove myself to the hospital, and checked into the emergency room for the 3rd time. I called Missy, and could tell by her voice she was getting really worried. She got our neighbor to watch the boys, and came to the hospital. The doctor that saw me, finally ordered a full workup, blood, urine, ekg. When Missy arrived she was relieved to hear that someone was finally taking a close look at me. After a 2 hour wait, the doctor returned to the room and told us that something was up. My blood counts were off. Specifically my white blood cells. She said it could be something as benign as an infection or possibly something "malignant". While were shocked to hear the word, neither one of us believed that's what it was. They decided to admit me and do more tests. And so on January 31, 2011, I began a 35 day stay at Fletcher Allen hospital.
The Diagnosis
Over the next few days I relinquished what dignity I thought I had. My first night I had to have a temporary catheter put in by a young nurse, because due to all the painkillers, I couldn't pee. I asked for a pillow to put over my face, and moaned and groaned the whole way through it. The poor guy I shared the room with had to sit there and listen to me. Definitely one of the more uncomfortable procedures I've ever been through. The next day I had my first enema. They needed to shoot dye up my ass so that they could take a look at my insides. I had x-rays taken literally of every bone in my body. I had a full body MRI, and more blood drawn than I believed was prudent. All of the tests were coming up clean more or less. They did see my spleen was slightly enlarged and knew my kidney was functioning at only 50%, but other than that nothing was really pointing to anything. After 3 days of coming up dry, they ordered a bone marrow biopsy as my last check, before they were going to send me off to Infectious Disease or Autoimmune Disorders. While nothing definitive was showing up, my counts were continuing to go down. Missy was with me for the biopsy on Feb. 3rd. They basically drill a hole into your pelvis, aspirate some blood cells and then go in for a piece of the marrow. The test was done at 11:30 a.m. and at 4:20 the doctor came in to see us. Their was a harp player in the room (a hospital perk), and he asked her to leave. Missy was still there and her Mom had also popped in to see me. The doctor sat down and was definitely uncomfortable...visibly sweating. He gave us the diagnosis. At first when I heard the word's Acute Myloid Luekemia, I was relieved. I thought to myself... Ah ha I was right, the pain was real, and now I can get down to the business of getting better. Quickly my relief was replaced by many emotions. Knowing how the diagnosis was hitting Missy, watching her try to control her emotions and then hearing her sob when the doctor said Leukemia, was absolutely the worst feeling in the world. I felt a deep sense of guilt for bringing this burden to our lives, and totally helpless in making her feel better. In a paltry effort at sounding valiant I said to the doctor, "good...ok...well what do we have to do to fix it". Needless to say it was a long night.
Wednesday, April 13, 2011
Greetings
The mere word blog has always bothered me. While its true that most words ending in og refer to great things, i.e. nog, frog, & bog, I can't help but think the word blog belongs to a world that was created much too quickly for anyone to stop and say, wait a minute is this term cool; do I really want to call myself a blogger. Do men really want to tweet and "friend" each other? Anyhow despite my misgivings I think the value of the blog itself outweighs its name so here we go.
Presently, this blog is to keep folks up to date on my progress fighting AML. I'm starting it a bit midstream in my treatment, so over the course of the next few posts I'll bring those of you who don't know the whole story up to speed.
Later.
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