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!
Thursday, June 23, 2011
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.
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