Everyone is going to die someday. It might be of old age, a car accident, disease, heart attack, murder, or just falling in the house. Most people have a fear of death because we fear what we don’t know or understand. I’ll be the first to admit that I DO fear the grim reaper. What I don’t fear is failing, if I know I’ve tried my hardest until now.
With biopsy results looming of a possible lymphoma relapse, I realize I AM going to fail. I have fought my hardest for over 2 years. Lost my wife. Lost my house and lost several friends on the way. Spent more time in the hospital then anyone should have to who isn’t getting paid to be there. Shit myself because I can’t control my bowels. Threw up every night at 3:30am for over 4 weeks straight. Couldn’t drive a car for 6 months. Was hospitalized twice inexplicably. Broke my back by simply trying to pick up and hold my son. And at the end of the day, I thought I broke the mold and won. But I’m wrong.
I take pride in knowing I fought hard and hopefully I will find the strength to fight again if I have to. But the truth is, there is NO cure for Mantle Cell Lymphoma. I may have to restart chemo, radiation or have more infusions or another stem cell transplant. Truth is…no one has ever beaten Mantle Cell. It is rare, aggressive, and a killer. There are ways to slow it, but it will come back, and each time it does, the treatments work a little less to contain it.
Most medical professionals would say I’ve done good making it this far. The surgeon who took my first biopsies over 2 years ago now, couldn’t even face me with the diagnosis. He called me on the phone because he actually thought he was giving me a death sentence. My oncologists are calm now, because they know I am scared to death. And I know they gave me the medical world’s biggest, baddest Mike Tyson upper-cut treatments to try and beat this disease, because it is what it is. A killer.
The moral is I fear failing and death. Unfortunately, I will fail (probably sooner than later) and will die. I hate the thought of not seeing my little boy grow up. I hate the thought of not having control over my own destiny anymore. I’ve always been a glass half empty guy, but I also always tried to be the life of the party. I’m not sure how more parties I have in me, but I’ll try to make a few more waves before my ship sails.
Any words of inspiration are welcome. Right now I could use the help.
Thank you.
~Cheers
Adam
Tuesday, June 8, 2010
Friday, May 7, 2010
Trust what they say
I would like to think I can take a person’s word a gospel, but usually I need to learn through my own experiences. However, when a seasoned nurse gives you sound advice, I suggest you take it and not test the waters.
I learned a few things the hard way during my stay at Brigham and Women’s. First, throw your pride out the window. If you need help, then you better ask, because whatever is about to happen, you probably can’t handle on your own. Second, don’t feel bad about making or causing an accident. I now give my son this advice, as some times in life, accidents are unavoidable. Third, when a nurse gives you advice (helpful hints) as to what to expect and how to prepare, don’t think they are blowing smoke up your butt. They have seen it all and know a whole lot more than you.
This brings me to a funny and somewhat gross topic. There is no such thing as a “Dry Fart” in the BMT (Bone Marrow Transplant) ward. A nurse told me these exact words 3 days into my 4 week stay in the hospital. Humility is an awful thing to learn in a moment’s notice.
Imagine yourself, laying in bed, watching TV, and that normal gassy feeling hits your stomach. No ones around, not a big deal. Just let the gas go. Whoa! What the F’ck! Crap! Literally, crap. Ok, first time was a test. Damn, she was right. Second time was all my fault. Shame on me. Third time, I couldn’t get out of bed in time. Talk about embarrassing. A 30-year old male barely being able to control his bowels. I repeat. Check your pride at the door.
So, Yes! There IS NO such thing as a “Dry Fart” in the BMT ward. Almost as bad as my first two nights in the hospital, when the nurse hooked me up to Lasix (a diuretic) while I was sleeping to help me pee out the extra chemo. Nothing like waking up every 15 minutes to take a leak. I suppose it is better than shitting your pants for a week, or not being able to fart for 6 months but not by much.
Don’t go anywhere. The real fun is just beginning. There will be crying, vomiting and fun reality to come. Please stick around you don’t want to miss this.
Happy Mother’s Day weekend to all!
Cheers,
~Adam
I learned a few things the hard way during my stay at Brigham and Women’s. First, throw your pride out the window. If you need help, then you better ask, because whatever is about to happen, you probably can’t handle on your own. Second, don’t feel bad about making or causing an accident. I now give my son this advice, as some times in life, accidents are unavoidable. Third, when a nurse gives you advice (helpful hints) as to what to expect and how to prepare, don’t think they are blowing smoke up your butt. They have seen it all and know a whole lot more than you.
This brings me to a funny and somewhat gross topic. There is no such thing as a “Dry Fart” in the BMT (Bone Marrow Transplant) ward. A nurse told me these exact words 3 days into my 4 week stay in the hospital. Humility is an awful thing to learn in a moment’s notice.
Imagine yourself, laying in bed, watching TV, and that normal gassy feeling hits your stomach. No ones around, not a big deal. Just let the gas go. Whoa! What the F’ck! Crap! Literally, crap. Ok, first time was a test. Damn, she was right. Second time was all my fault. Shame on me. Third time, I couldn’t get out of bed in time. Talk about embarrassing. A 30-year old male barely being able to control his bowels. I repeat. Check your pride at the door.
So, Yes! There IS NO such thing as a “Dry Fart” in the BMT ward. Almost as bad as my first two nights in the hospital, when the nurse hooked me up to Lasix (a diuretic) while I was sleeping to help me pee out the extra chemo. Nothing like waking up every 15 minutes to take a leak. I suppose it is better than shitting your pants for a week, or not being able to fart for 6 months but not by much.
Don’t go anywhere. The real fun is just beginning. There will be crying, vomiting and fun reality to come. Please stick around you don’t want to miss this.
Happy Mother’s Day weekend to all!
Cheers,
~Adam
Wednesday, May 5, 2010
4-star treatment
Picture this. You have your own room. You have your own bed. You have your own bathroom and shower. You have a TV with cable and a DVD player. You have a view of the city. Someone makes your bed, cleans your room and bathroom, brings you food and drink to order, and bathes you everyday. Sounds pretty good right? Where do I sign up? Let me further elaborate.
Your room has a glass wall and door. Your house is a semi-circle corridor of 12 exact same rooms. You are under constant surveillance in your self-contained fishbowl. You aren’t allowed to leave your enclosure without safety mask and gloves. Every four hours whether you are asleep or awake, someone interrupts you and every 12 hours you give blood. Your intake and outtake (that’s right, good ole’ #1 and #2) are kept for examination and measured several times a day. Now how does this sound? That is taking 4-star treatment to the extreme.
Yes, this is the life I led for 4 straight weeks in the BMT (Bone Marrow Transplant) ward at Brigham & Women’s hospital in Oct and Nov of 2008. However, what I just described may actually sound like 4-star treatment after I divulge more of my experiences.
I’ll allow you to digest this information and if you want to stay with me, more fun will follow.
Happy Cinco de Mayo!
Cheers
~Adam
Your room has a glass wall and door. Your house is a semi-circle corridor of 12 exact same rooms. You are under constant surveillance in your self-contained fishbowl. You aren’t allowed to leave your enclosure without safety mask and gloves. Every four hours whether you are asleep or awake, someone interrupts you and every 12 hours you give blood. Your intake and outtake (that’s right, good ole’ #1 and #2) are kept for examination and measured several times a day. Now how does this sound? That is taking 4-star treatment to the extreme.
Yes, this is the life I led for 4 straight weeks in the BMT (Bone Marrow Transplant) ward at Brigham & Women’s hospital in Oct and Nov of 2008. However, what I just described may actually sound like 4-star treatment after I divulge more of my experiences.
I’ll allow you to digest this information and if you want to stay with me, more fun will follow.
Happy Cinco de Mayo!
Cheers
~Adam
Tuesday, April 20, 2010
Time to get real
“To thy own self be true hamlet.” - William Shakespeare, Hamlet Act 1, scene 3, 78
I started writing this blog to give friends, family, and complete strangers insight into my cancer and treatments and hopefully providing some inspiration to those fighting their own battles in life. Also, I found it therapeutic to write about the events I’ve experienced. I needed to empty the thoughts polluting my mind for so long now.
However, it comes to my attention, there are details I purposely omitted because I felt they were too graphic or personal to divulge. These details are the ones which keep me awake at night. The details that make certain smells, TV programs, music, etcetera almost unbearable.
I will start story-telling about some of my more graphic, emotional, sad, and in some cases humorous events that occurred in and out of the hospital since my diagnosis. Be patient, stay with me, and enjoy the ride.
Cheers!
~Adam
I started writing this blog to give friends, family, and complete strangers insight into my cancer and treatments and hopefully providing some inspiration to those fighting their own battles in life. Also, I found it therapeutic to write about the events I’ve experienced. I needed to empty the thoughts polluting my mind for so long now.
However, it comes to my attention, there are details I purposely omitted because I felt they were too graphic or personal to divulge. These details are the ones which keep me awake at night. The details that make certain smells, TV programs, music, etcetera almost unbearable.
I will start story-telling about some of my more graphic, emotional, sad, and in some cases humorous events that occurred in and out of the hospital since my diagnosis. Be patient, stay with me, and enjoy the ride.
Cheers!
~Adam
Thursday, April 8, 2010
Sitting in clinic
First and foremost, I want to say “Happy Birthday” to my brother, Beau. He is not only my best friend in this crazy thing called life, but his blood runs through my veins. Thank you for always being there for me and thank you for giving your lifeblood to save mine. I love you, bro.
So, here I am sitting at Dana Farber receiving some IVIG (explained in a prior post). My vitals and blood work on Monday looked good. Both of my doctors think things are going really well. And I must agree.
We are still tinkering with medications. Trying to make sure there is no increase in Graph vs. Host disease, increase to the pain to my back, and increase to the fluid retention. It has been one month and so far so good.
Next month, besides coming to clinic for my regular blood work and check-up, we are also going to run another CT/PET scan. It has been six months since my last scan, which showed I was in complete remission. If this scan reveals the same results, I fully intend to return to work this summer, perhaps as early as June.
I am starting to feel “normal” again. I’ve traveled to St. Louis to visit my brother. I’ve driven down to Hartford to visit friends and participate in an annual fantasy baseball auction, that I was unable to attend last year. My mind is running a mile a minute and I am impatiently waiting for my body to catch up to it.
Given everything that I’ve been though in the past 2 years, I am in good spirits and find myself being ready to step up and start living again. I have no problem traveling alone but if you want to come along for the ride, I say “the more the merrier”.
Cheers!
~Adam
So, here I am sitting at Dana Farber receiving some IVIG (explained in a prior post). My vitals and blood work on Monday looked good. Both of my doctors think things are going really well. And I must agree.
We are still tinkering with medications. Trying to make sure there is no increase in Graph vs. Host disease, increase to the pain to my back, and increase to the fluid retention. It has been one month and so far so good.
Next month, besides coming to clinic for my regular blood work and check-up, we are also going to run another CT/PET scan. It has been six months since my last scan, which showed I was in complete remission. If this scan reveals the same results, I fully intend to return to work this summer, perhaps as early as June.
I am starting to feel “normal” again. I’ve traveled to St. Louis to visit my brother. I’ve driven down to Hartford to visit friends and participate in an annual fantasy baseball auction, that I was unable to attend last year. My mind is running a mile a minute and I am impatiently waiting for my body to catch up to it.
Given everything that I’ve been though in the past 2 years, I am in good spirits and find myself being ready to step up and start living again. I have no problem traveling alone but if you want to come along for the ride, I say “the more the merrier”.
Cheers!
~Adam
Monday, March 8, 2010
Not done yet!
Long time no talk. This is what I say to everyone when I am reaching out to say “Hi.” Well, it has been over a month with no updates so here goes.
Picture it. Peabody. 10am, March 4th, no plans, pajamas, not showered, sitting in front of Facebook playing Bejeweled. Ring, ring. Ring, ring. “Hello.”
“Hi Adam, this is Katie from Dr. Armand’s office at the Dana Farber. Can you come into today at 1:30pm?”
“Yeah, I guess. There is no way to do it on Monday.”
“Umm…I know it is short notice but this is the only day in the next two weeks both doctors can see you,” she said.
“Ok, no problem. I’ll be there”
Good news is my IV port flushed well and had a blood return. The passing out ceremony was unnecessary. More good news. My blood counts were solid. We are two for two folks, going for the trifecta. Bad news is I’ve added an extra 10lbs in one month, possible due to edema, I’m extremely fatigued and having back and chest pain. What do we do?
Before I go into greater detail, here is a brief history lesson. Back in May of 2009, my breathing became so labored due to Graph versus Host disease (GVH), that I was put on oxygen, steroids, and hospitalized for four days. And now after almost 10 months of steroid use, I was within .5mg per day of Dexamethasone from being completely taken off it for good. Now allow me to continue by update.
There are several things that could be causing my discomfort.
1. GVH. We (the doctors and I) thought it was long gone. Maybe not.
2. Adrenal Gland failure. When a body is administered steroids for as long as mine, the adrenal glands become dependent on the drugs for hormones instead of continuing to perform and produce their own.
3. Thyroid disorder. Patients who have had stem cell transplants, can be prone to thyroid disorders. According to my doctors, this will be the easiest problem to diagnosis and treat if found to be my issue.
4. We might have no clue.
Dana Farber already performed a CAT scan to rule out blood clots and potential swelling in my lungs. (My O2 levels had dropped from 94, which is low anyway, to 82 after a brief walk and six flights of stairs.) The next step is more blood and urine work for adrenal gland and thyroid issues. I will be scheduled for a full pulmonary screening if all other tests come back negative.
In the meantime, I’ve been instructed to increase my steroid intake from .5mg to 2mg daily (to combat possible GVH). I am doubling Furosemide (a diuretic used for congestive heart failure and edema) and cutting back to a low sodium (under 2400mg a day) diet.
Apparently these kinds of setbacks aren’t unusual under my circumstances. I know of two people both over three years removed from their stem cell transplants, who still haven’t returned to work, continue to be hospitalized by the common cold, and are always fatigued like myself. And although I could allow this to tear me down, I will fight on.
I have too much to live for, even though focusing on that is sometimes hard. I have good friends, loving parents, my family in St. Louis, and my amazing son. I am only 31 and plan on being here as long as there is breath in these lungs.
I want to take this opportunity to wish both my parents and nephew a “Happy Birthday!” March is a busy birthday month, 11th, 16th, and 23rd. Also if I don’t update before St. Patrick’s day, go out and have a pint on me but always remember to please be safe.
Until next time, Cheers!
Picture it. Peabody. 10am, March 4th, no plans, pajamas, not showered, sitting in front of Facebook playing Bejeweled. Ring, ring. Ring, ring. “Hello.”
“Hi Adam, this is Katie from Dr. Armand’s office at the Dana Farber. Can you come into today at 1:30pm?”
“Yeah, I guess. There is no way to do it on Monday.”
“Umm…I know it is short notice but this is the only day in the next two weeks both doctors can see you,” she said.
“Ok, no problem. I’ll be there”
Good news is my IV port flushed well and had a blood return. The passing out ceremony was unnecessary. More good news. My blood counts were solid. We are two for two folks, going for the trifecta. Bad news is I’ve added an extra 10lbs in one month, possible due to edema, I’m extremely fatigued and having back and chest pain. What do we do?
Before I go into greater detail, here is a brief history lesson. Back in May of 2009, my breathing became so labored due to Graph versus Host disease (GVH), that I was put on oxygen, steroids, and hospitalized for four days. And now after almost 10 months of steroid use, I was within .5mg per day of Dexamethasone from being completely taken off it for good. Now allow me to continue by update.
There are several things that could be causing my discomfort.
1. GVH. We (the doctors and I) thought it was long gone. Maybe not.
2. Adrenal Gland failure. When a body is administered steroids for as long as mine, the adrenal glands become dependent on the drugs for hormones instead of continuing to perform and produce their own.
3. Thyroid disorder. Patients who have had stem cell transplants, can be prone to thyroid disorders. According to my doctors, this will be the easiest problem to diagnosis and treat if found to be my issue.
4. We might have no clue.
Dana Farber already performed a CAT scan to rule out blood clots and potential swelling in my lungs. (My O2 levels had dropped from 94, which is low anyway, to 82 after a brief walk and six flights of stairs.) The next step is more blood and urine work for adrenal gland and thyroid issues. I will be scheduled for a full pulmonary screening if all other tests come back negative.
In the meantime, I’ve been instructed to increase my steroid intake from .5mg to 2mg daily (to combat possible GVH). I am doubling Furosemide (a diuretic used for congestive heart failure and edema) and cutting back to a low sodium (under 2400mg a day) diet.
Apparently these kinds of setbacks aren’t unusual under my circumstances. I know of two people both over three years removed from their stem cell transplants, who still haven’t returned to work, continue to be hospitalized by the common cold, and are always fatigued like myself. And although I could allow this to tear me down, I will fight on.
I have too much to live for, even though focusing on that is sometimes hard. I have good friends, loving parents, my family in St. Louis, and my amazing son. I am only 31 and plan on being here as long as there is breath in these lungs.
I want to take this opportunity to wish both my parents and nephew a “Happy Birthday!” March is a busy birthday month, 11th, 16th, and 23rd. Also if I don’t update before St. Patrick’s day, go out and have a pint on me but always remember to please be safe.
Until next time, Cheers!
Thursday, February 11, 2010
Feeling Content
What can I say? I haven’t written in a while. Not entirely sure if it is a major case of writer’s block, lack of a good topic, or perhaps things have been going well lately and I have difficulty writing when I’m content instead of upset.
I have two impending doctor appointments coming up, which I am not overly concerned about. Gabe has had a few minor incidents at daycare, however I feel confident with some good parenting and patience he’ll be fine. Remember he IS only 3. The separation agreement between my wife and I is being finalized and the house will either be sold or foreclosed on shortly. Things are looking up.
This past week, I actually got a plane and visited my brother and his family in St. Louis. Twenty months ago, this was not even a consideration. Chemo, radiation, stem cell transplant…an immune system which would be compromised if the bathroom wasn’t cleaned daily, let alone being crammed inside a germ-infested airplane for 3 ½ hours. Thankfully, my health is improving and more trips like this should be in my future.
It was an awesome trip. Besides getting away from the cave (my bedroom), I got to spend quality time with my brother, his wife and my nephew, Adam. We went to a Mongolian BBQ grille, a SuperBowl party, a bar, watched some funny movies and I even went to church. I got my drink on for the first time in over 2 years and even made a few new friends, which I am keeping in touch with through email and Facebook.
I am finally on my way to recovery, physically, mentally, and emotionally. Nothing in life is perfect but luckily for me, things are starting to work themselves out. The most important thing is to never give up. It is very easy to despair at times but you must keep your head up.
I will still talk about my experiences with lymphoma but hopefully with less doom and gloom. Stay with me as the journey continues.
~Cheers!
I have two impending doctor appointments coming up, which I am not overly concerned about. Gabe has had a few minor incidents at daycare, however I feel confident with some good parenting and patience he’ll be fine. Remember he IS only 3. The separation agreement between my wife and I is being finalized and the house will either be sold or foreclosed on shortly. Things are looking up.
This past week, I actually got a plane and visited my brother and his family in St. Louis. Twenty months ago, this was not even a consideration. Chemo, radiation, stem cell transplant…an immune system which would be compromised if the bathroom wasn’t cleaned daily, let alone being crammed inside a germ-infested airplane for 3 ½ hours. Thankfully, my health is improving and more trips like this should be in my future.
It was an awesome trip. Besides getting away from the cave (my bedroom), I got to spend quality time with my brother, his wife and my nephew, Adam. We went to a Mongolian BBQ grille, a SuperBowl party, a bar, watched some funny movies and I even went to church. I got my drink on for the first time in over 2 years and even made a few new friends, which I am keeping in touch with through email and Facebook.
I am finally on my way to recovery, physically, mentally, and emotionally. Nothing in life is perfect but luckily for me, things are starting to work themselves out. The most important thing is to never give up. It is very easy to despair at times but you must keep your head up.
I will still talk about my experiences with lymphoma but hopefully with less doom and gloom. Stay with me as the journey continues.
~Cheers!
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