“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
Tuesday, April 20, 2010
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!
Sunday, January 10, 2010
The New Year
The new year and a new decade is here. Welcome 2010! You can’t be any worse than 2009.
Let’s review 2009. My wife asked for a divorce. I moved back home with my parents. My house hasn’t sold. I fractured my back. I made 33 documented visits to the hospital or clinic this year (probably more). I don’t see my son on a full-time basis, but in the end my cancer was shown to be in complete remission.
Looking ahead to 2010, here a few things I want to do and plan to do. I want to improve my culinary skills. With all my free time, I have had the opportunity to cook allot and would truly like to continue that. I plan to finally return to work in 3-4 months as long as my blood counts stay where they are. And I have full intentions of moving into my own apartment before year’s end.
I have been given something most people never get: a second chance. There is no right or wrong decisions or answers. Will I make more mistakes? Probably. Will I let those mistakes break me? No. Everything I do makes me stronger and builds my wonderful character. (brief pause for snickering)
I look forward to 2010. To see where my journey takes me and how much my son continues to grow up.
So here is to new beginnings.
Cheers!
Let’s review 2009. My wife asked for a divorce. I moved back home with my parents. My house hasn’t sold. I fractured my back. I made 33 documented visits to the hospital or clinic this year (probably more). I don’t see my son on a full-time basis, but in the end my cancer was shown to be in complete remission.
Looking ahead to 2010, here a few things I want to do and plan to do. I want to improve my culinary skills. With all my free time, I have had the opportunity to cook allot and would truly like to continue that. I plan to finally return to work in 3-4 months as long as my blood counts stay where they are. And I have full intentions of moving into my own apartment before year’s end.
I have been given something most people never get: a second chance. There is no right or wrong decisions or answers. Will I make more mistakes? Probably. Will I let those mistakes break me? No. Everything I do makes me stronger and builds my wonderful character. (brief pause for snickering)
I look forward to 2010. To see where my journey takes me and how much my son continues to grow up.
So here is to new beginnings.
Cheers!
Saturday, December 19, 2009
Happy Holidays
I haven’t made a post in 11 days and I’m laying in bed watching a classic Christmas tale, National Lampoon’s Christmas Vacation. Perhaps you prefer It’s a Wonderful Life, Home Alone, A Christmas Story, or one of the many variations of Charles Dickens’ A Christmas Carol. Whatever your holiday movie is, everyone has their favorite and families have their holiday traditions.
Around the holiday season, my father usually whips up a big batch of his amazing potato latkes for Hanukkah. Outside of lighting a menorah and my mother hanging decorations, this is the basic holiday festivities in my parents’ house.
My Christmas Eves for the better part of the last dozen years has been spent in the company of my best friends from high school. I’ve enjoyed Christmas morning breakfast at my father-in-law’s house and Christmas dinner at my mother-in-law’s house. I was unable to attend any of those events last year due to diagnosis and recovery from cancer. This year, I will not be in attendance either due to an impending divorce and lack of invitations.
However, not everything is doom and gloom. I was fortunate to spend the first 3 days of Hanukkah with Gabe this year. He helped light the electric menorah (safe for the young ones) and learned how to spin a dreidel. He came with me to the Masonic Holiday party my lodge held and even met Santa Claus. He asks to the use the potty on a consistent basis, gives me hugs, kisses, and tells me, he loves me. Not too bad.
So, here are my Christmas gifts to you. A positive attitude can help in the healing process. Only you can make yourself happy. Listen to others but remain true to yourself. Best wishes and good health to all.
Happy Holidays!
~Cheers
Side note:
I have received lots of feedback since starting this blog months ago. The majority have been positive and recently some negative. Most feel I am a fairly talented writer. Some people were surprised with the information concerning my disease and fight and happy it was shared. Some people think I am looking for pity and one even wants me to stop posting.
I learned a very important lesson in the hospital from a nurse who was in his second relapse with cancer. When you go through something this tough and trying, you earn the right to live for yourself first and tell everyone else to screw. There is nothing positive about cancer. I will not sugar-coat my experiences and feelings.
Around the holiday season, my father usually whips up a big batch of his amazing potato latkes for Hanukkah. Outside of lighting a menorah and my mother hanging decorations, this is the basic holiday festivities in my parents’ house.
My Christmas Eves for the better part of the last dozen years has been spent in the company of my best friends from high school. I’ve enjoyed Christmas morning breakfast at my father-in-law’s house and Christmas dinner at my mother-in-law’s house. I was unable to attend any of those events last year due to diagnosis and recovery from cancer. This year, I will not be in attendance either due to an impending divorce and lack of invitations.
However, not everything is doom and gloom. I was fortunate to spend the first 3 days of Hanukkah with Gabe this year. He helped light the electric menorah (safe for the young ones) and learned how to spin a dreidel. He came with me to the Masonic Holiday party my lodge held and even met Santa Claus. He asks to the use the potty on a consistent basis, gives me hugs, kisses, and tells me, he loves me. Not too bad.
So, here are my Christmas gifts to you. A positive attitude can help in the healing process. Only you can make yourself happy. Listen to others but remain true to yourself. Best wishes and good health to all.
Happy Holidays!
~Cheers
Side note:
I have received lots of feedback since starting this blog months ago. The majority have been positive and recently some negative. Most feel I am a fairly talented writer. Some people were surprised with the information concerning my disease and fight and happy it was shared. Some people think I am looking for pity and one even wants me to stop posting.
I learned a very important lesson in the hospital from a nurse who was in his second relapse with cancer. When you go through something this tough and trying, you earn the right to live for yourself first and tell everyone else to screw. There is nothing positive about cancer. I will not sugar-coat my experiences and feelings.
Tuesday, December 8, 2009
Best Wishes
This week, I originally planned on writing about some happy memories from my past, but recent events have changed my mind.
I may not feel well and am still in the midst of recovery from treatments, however my treatments worked and I am extremely fortunate to be in full remission. I am lucky to have insurance that covered my treatment costs. I don’t wish or want disease, especially cancer, on anyone.
There are many who will be diagnosed this year and not have insurance for treatment or will receive treatment that will not work. These people are fathers, mothers, brothers, sisters, sons, daughters, family, friends, lovers, spouses, co-workers, and complete strangers. No one is safe from this disease and research must be done. I’m not asking for donations of money, but take the time to think about others less fortunate then you and maybe say a prayer for better times whether you are religious or not.
Here’s my topic for the day:
Follicular Lymphoma is the second most commonly diagnosed non-Hodgkin’s Lymphoma. Approximately 22% of all non-Hodgkin’s Lymphoma patients are afflicted by Follicular Lymphoma. It is a slow growing lymphoma that arises in B-cells (a type of white blood cells). It is considered a “low-grade” lymphoma due to its slow nature in behavior and how is looks under the microscope.
Some patients may never need treatment, although the median survival time is 10 years with a wide range from less then one year to 20 years. Because the disease moves so slow, diagnosis usually goes unnoticed until it is too late. By the time, most patients (80-85%) are diagnosed the disease is widespread throughout the lymph nodes, bone marrow and major organs.
Now, I am not afflicted with Follicular lymphoma but my father-in-law is. His daughter and I may have our differences and are no longer together but he has always been a gentleman towards me. He helped to move us in when we bought a new house. He came and mowed the lawn when I was too sick and unable to. He went from shop to shop and person to person for donations towards a benefit to help us when I was unable to work. He always had a Memorial Day BBQ and Christmas morning breakfast at his house. He always gave his time to help when and where it was needed. I wish nothing bad for this man; just good fortune and health. Unfortunately that isn’t the case.
He and I have many things in common. We are both divorced. We both live at home with our parents. We both love our kids. We both have fought and continue to fight battles with lymphoma. The difference - my fight is on the upswing and his is going down.
I have recently been made aware that he will enter the hospital on Thursday for back surgery. Due to the disease and treatment, he now has a fracture in his back. (I also fractured my back due to treatments.) Radiology shows a mass in his back near the fracture. Doctors don’t know if this mass is a bone fragment from the fracture or a possible tumor and they won’t know until he is laid open on an operating table.
I want to send my prayers and best wishes out to George, my father-in-law. He is a humble man, who doesn’t ask from anyone. I hope everyone will join me in sending good karma his way. I may not be religious but I believe good spirits and positive thoughts can be uplifting to the body, mind and soul.
~Thank you and Cheers!
I may not feel well and am still in the midst of recovery from treatments, however my treatments worked and I am extremely fortunate to be in full remission. I am lucky to have insurance that covered my treatment costs. I don’t wish or want disease, especially cancer, on anyone.
There are many who will be diagnosed this year and not have insurance for treatment or will receive treatment that will not work. These people are fathers, mothers, brothers, sisters, sons, daughters, family, friends, lovers, spouses, co-workers, and complete strangers. No one is safe from this disease and research must be done. I’m not asking for donations of money, but take the time to think about others less fortunate then you and maybe say a prayer for better times whether you are religious or not.
Here’s my topic for the day:
Follicular Lymphoma is the second most commonly diagnosed non-Hodgkin’s Lymphoma. Approximately 22% of all non-Hodgkin’s Lymphoma patients are afflicted by Follicular Lymphoma. It is a slow growing lymphoma that arises in B-cells (a type of white blood cells). It is considered a “low-grade” lymphoma due to its slow nature in behavior and how is looks under the microscope.
Some patients may never need treatment, although the median survival time is 10 years with a wide range from less then one year to 20 years. Because the disease moves so slow, diagnosis usually goes unnoticed until it is too late. By the time, most patients (80-85%) are diagnosed the disease is widespread throughout the lymph nodes, bone marrow and major organs.
Now, I am not afflicted with Follicular lymphoma but my father-in-law is. His daughter and I may have our differences and are no longer together but he has always been a gentleman towards me. He helped to move us in when we bought a new house. He came and mowed the lawn when I was too sick and unable to. He went from shop to shop and person to person for donations towards a benefit to help us when I was unable to work. He always had a Memorial Day BBQ and Christmas morning breakfast at his house. He always gave his time to help when and where it was needed. I wish nothing bad for this man; just good fortune and health. Unfortunately that isn’t the case.
He and I have many things in common. We are both divorced. We both live at home with our parents. We both love our kids. We both have fought and continue to fight battles with lymphoma. The difference - my fight is on the upswing and his is going down.
I have recently been made aware that he will enter the hospital on Thursday for back surgery. Due to the disease and treatment, he now has a fracture in his back. (I also fractured my back due to treatments.) Radiology shows a mass in his back near the fracture. Doctors don’t know if this mass is a bone fragment from the fracture or a possible tumor and they won’t know until he is laid open on an operating table.
I want to send my prayers and best wishes out to George, my father-in-law. He is a humble man, who doesn’t ask from anyone. I hope everyone will join me in sending good karma his way. I may not be religious but I believe good spirits and positive thoughts can be uplifting to the body, mind and soul.
~Thank you and Cheers!
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