For the last several months the boys and I have been busy. Very busy. Going from place to place or having visitors up north, I don't think there has been one weekend since the new year where we have been on our own. It has been good for all of us or so it would seem. After all, by going all the time you "keep busy." You can release your mind from the constant reminder of where you really are in life.
The last ten days, we have been on the go nonstop. We were down in Virginia first, then the boys went to CT to stay with Doug's parents while I went to work in MA for the week. Seeing friends and family was well worth it and wonderful. I was able to spend 10 days connecting with old friends and family everywhere we went. It amounted to ten straight days of laughing and having a great time, feeling much like a normal person again. Ten straight days of not facing the reality of my life. Returning back home to VT today, and settling back into our home, the home that Doug and I bought as part of our dream, I want to run for the road again. I feel like an addict of sorts, knowing that laughter and good times can pull me away from what is still so fresh and too real a reality. But, as I take a step back, I know I can not and should not run from these feelings. I am admittedly too level headed to know that they will not go away and that while it might feel good for the moment to keep trying to dodge them, I need to stop going. I need to feel.
People have a lot of assumptions about grief - how it should feel, look and how long it should last. I don't profess to have any better understanding than anyone else out there. I'm not sure grief ever goes away, but rather morphs into different feelings along the way. As we approach nearly seven months out from Doug's passing, some people assume I should be doing fine now and the days should be easy. Others don't understand how I can get out of bed everyday, work, travel, cook, clean, raise our two kids and occasionally find time for myself. I assume nothing and still take each day as it comes. I can't run and hide from this much as I would like to some days. Grief is personal and I need to listen to my mind and body - it is still sound. Right now, they are saying laughter and good times with friends are good for me as there will be plenty of days to keep me in check. Today is case in point.
On the Go Part II:
> aml is just one week shy of when Doug started it last year. He was skeptical to start it, but then found that like so many other times in his life, writing was cathartic and energized him. I always liked to write as well and found the blog to be an easy outlet to keep everyone connected on the "adventure." Now almost a year later, the blog with its 67 followers, has had 16,150 page views as of today. Visits have come from the US, UK, Germany, Netherlands, Russia, Ukraine, Ireland, France, Austria and Canada.
The Blog has continued to serve as a way for me to communicate how we are managing to come out > aml and ways in which we are keeping Doug's memory alive. Just about five months ago, we posted the Memorial Endowment information we had decided on as a family to keep Doug's memory present for many years to come. Outside of the two endowments, there are several people running races in Doug's memory, the VT ASLA (American Society of Landscape Architects) is starting a lecture series in his name, and a bench is being placed in his memory at the Fletcher Allen Hospital green roof he designed for their new Radiation/Oncology Center. The green roof was completed a few months before Doug was diagnosed with Leukemia and became a patient at Fletcher Allen himself.
The support for the endowments has been incredible. While so many who gave are not "followers" of the blog, I am hoping they might check in periodically to see where their support has brought us:
Xavier Scholarship: The Doug Crowell Memorial Scholarship is currently endowed at $16,000. Family, friends and Xavier were overwhelmed by the generosity of a family Doug had worked with professionally in the past. They contributed significantly to his scholarship and included an incredibly touching note capturing the essence of Doug so beautifully. Xavier will be able to start administrating the Scholarship in Doug's name in the coming school year and for years to come.
Green Mountain Club Long Trail Shelter: The Endowment for the Green Mountain Shelter is currently at $10,900. The goal is $15,000 to have the Shelter placed in Doug's memory. We are getting there, and again the family has been touched by the number of people who have given to the fund. Some who have only met Doug once, others who have only heard stories, yet felt a strong enough connection to work with us towards making this happen. As Doug loved physical pursuits and pushing himself hard, we have thrown around some fund raising ideas to make the Shelter happen. It would be a way to get us all on the mountains and get his named etched on a Shelter for a lifetime.
Saturday, March 31, 2012
Wednesday, December 21, 2011
The Beat Goes On
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.
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.
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.
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