Just a quick update.
I went to an orthopedic specialist yesterday. He took x-rays and manipulated my knee (which now hurts worse than before) and it seems I have a slightly displaced knee cap and a bone spur. I have an MRI scheduled for next Wednesday to see if there is any further damage. From there, I will follow up with orthopedic and discuss a treatment plan. Could be anything from simple physical therapy to knee surgery.
Presently, the major concern is my ability to heal and control pain. After speaking with my oncologist this morning, if surgery is necessary there will be certain precautions we need to take medically to assure the best possible outcome. My timetable for healing is double that of the average healthy person. The only prescription to help my knee right, besides ice and rest, is anti-inflammatory medication (Ibuprofen i.e. Aleve, Motrin, Advil).
Secondly, Tuesday's blood results are back and things are somewhat encouraging. White cells were good. Red cells were stable (for a change). Platelets were up from 80 to 100 (norm is 180 or above). However, because my platelets are low, I shouldn't take any anti-inflammatory medication because the increased possibility of bruising and excess bleeding is too great.
I'll have more to write once the MRI is performed.
I would like to take this opportunity to send out prayers to Jessica's mom, who recently had a stoke, and Laurie's nephew, David, who is trying to recover from massive brain trauma. Please pray for their well-being and families. They need strength and we can help.
~Cheers
Adam
Thursday, July 29, 2010
Friday, July 23, 2010
God's Punishment
I had a very interesting conversation last night with someone I always believed to my soul mate in life. She is happily married and the mother of two. We hadn’t spoken in almost 10 years but the thought of her still warms my heart. I believe that in life we all come across and meet our soul mates. Not many will stay with or end up with that person, but that isn’t my overall point. I am comfortable knowing our paths crossed and she had a lasting impression on my life.
Now to my point which is a little off topic from my normal medical updates. In our discussion, she asked if I felt that getting sick was part of God’s plan for me. As most of you know, I am spiritual but not overly religious. However, this was my response.
Sickness and disease are God’s way of getting back at mankind for taking the gifts he’s provided to us for granted.
We were given a beautiful planet and ruined it. We were given the ability to love but hate so quickly. We are born into life with no prejudices but racism and anti-Semitism towards religions still exists. Homelessness and starvation flood our streets. War is all around us because mankind is never pleased with what they have. Everything needs to be bigger and better than what your neighbor has.
“God” or whomever is in charge of our lives doesn’t appreciate this, so sickness and disease are his (or her) way of punishing us. And unfortunately like cancer, he isn’t overly particular about who it hurts or afflicts. Everyone is innocent until proven guilty but he punishes everyone because we are all guilty for taking life for granted at times.
For some reason, I feel this post my stir more conversation then most things I write, but it was something on my mind and didn’t want to hold back. Please express your thoughts. I look forward to your feedback.
~Cheers
Adam
Now to my point which is a little off topic from my normal medical updates. In our discussion, she asked if I felt that getting sick was part of God’s plan for me. As most of you know, I am spiritual but not overly religious. However, this was my response.
Sickness and disease are God’s way of getting back at mankind for taking the gifts he’s provided to us for granted.
We were given a beautiful planet and ruined it. We were given the ability to love but hate so quickly. We are born into life with no prejudices but racism and anti-Semitism towards religions still exists. Homelessness and starvation flood our streets. War is all around us because mankind is never pleased with what they have. Everything needs to be bigger and better than what your neighbor has.
“God” or whomever is in charge of our lives doesn’t appreciate this, so sickness and disease are his (or her) way of punishing us. And unfortunately like cancer, he isn’t overly particular about who it hurts or afflicts. Everyone is innocent until proven guilty but he punishes everyone because we are all guilty for taking life for granted at times.
For some reason, I feel this post my stir more conversation then most things I write, but it was something on my mind and didn’t want to hold back. Please express your thoughts. I look forward to your feedback.
~Cheers
Adam
Thursday, July 15, 2010
If it's not one thing, it's another.
In the past 8 days, my oncologist has made reference to my survival of Mantle Cell Lymphoma in more than one way. First by saying, “Can you believe (that) in 4 months, it will be 2 years (referring to when we started the stem cell transplant). Second by saying, “Well, you are our ‘wonder’ patient.” Making reference to the fact that I’ve broken the mold on diagnosis, treatment, and survival for this lymphoma.
As refreshing and yet disturbing as these comments are, the problems keep coming.
In the past two months, we (my oncologists and I) discovered some new abnormalities in my blood. White blood cell counts, lipid levels, kidney functions, and electrolytes are normal. However, my overall red blood cell (RBC) count and platelets are low. This discovery caused them to drain 17 vials of blood yesterday in hopes of finding an answer. But as we‘ve found in the past, my body doesn’t follow any true diagnosis for disease or disorder. Allow me to explain further.
Hemolytic anemia is the abnormal breakdown of RBC’s either in the blood vessels or else where in the body. Microangiopathic hemolytic anemia or MAHA is a subgroup of hemolytic anemia caused by the tightness or constriction of blood vessels. When RBC’s are looked at under a microscope, they look fragmented and edged, instead of circular as blood cells should. Currently all signs point to the diagnosis of MAHA. However, my other blood work (kidneys function, etc), and lack of heart problems, jaundice or pallor make me yet again an anomaly who doesn’t fit the bill. My team of doctors has no plan of attack yet and we are still awaiting more blood results.
Moving right along, let’s discuss my left knee. For the past several weeks, I have experienced pain, swelling and discomfort behind my left knee. After years of burdening the load for a bum right knee, I assumed wear and tear had finally caught up. Of course, I am wrong. There is a chance, torn cartilage or ligament damage will be found, but after yesterday’s ultrasound we discovered a Baker’s cyst.
A Baker’s cyst is the benign swelling of a bursa behind the knee joint. It may be caused by other damage already in the knee and typically there is no true treatment plan. If it becomes too painful and discomforting, then is may be drained and a cortisone shot could be used but in most cases it either bursts internally or reduces on its own. Leg elevation, ice, and relaxation are usually the treatment plan.
Needless to say, I ran around from 8:30am to 5pm yesterday. Peabody to Dana Farber, check in, blood draw, check in again, oncologist appointment, check in again, back to blood draw, kill time in cafeteria for an hour waiting for an ultrasound, drive to Salem Hospital for knee ultrasound because Brigham nor Dana Farber could scan me, drive back home to Peabody just in time to see my mom arriving with Gabriel from daycare. If the cancer doesn’t kill me, the running around will.
So in a nutshell, I’ve gone from having a blood disease to now having a blood disorder. I have a royal pain in my knee instead of my ass. My doctors are shocked yet happy I’m alive, so everything else is gravy.
That’s all for now. I hope to get back to telling tales of my experiences in the hospital during my stem cell transplant soon. It seems like life keeps getting the way. Be well!
~Cheers!
As refreshing and yet disturbing as these comments are, the problems keep coming.
In the past two months, we (my oncologists and I) discovered some new abnormalities in my blood. White blood cell counts, lipid levels, kidney functions, and electrolytes are normal. However, my overall red blood cell (RBC) count and platelets are low. This discovery caused them to drain 17 vials of blood yesterday in hopes of finding an answer. But as we‘ve found in the past, my body doesn’t follow any true diagnosis for disease or disorder. Allow me to explain further.
Hemolytic anemia is the abnormal breakdown of RBC’s either in the blood vessels or else where in the body. Microangiopathic hemolytic anemia or MAHA is a subgroup of hemolytic anemia caused by the tightness or constriction of blood vessels. When RBC’s are looked at under a microscope, they look fragmented and edged, instead of circular as blood cells should. Currently all signs point to the diagnosis of MAHA. However, my other blood work (kidneys function, etc), and lack of heart problems, jaundice or pallor make me yet again an anomaly who doesn’t fit the bill. My team of doctors has no plan of attack yet and we are still awaiting more blood results.
Moving right along, let’s discuss my left knee. For the past several weeks, I have experienced pain, swelling and discomfort behind my left knee. After years of burdening the load for a bum right knee, I assumed wear and tear had finally caught up. Of course, I am wrong. There is a chance, torn cartilage or ligament damage will be found, but after yesterday’s ultrasound we discovered a Baker’s cyst.
A Baker’s cyst is the benign swelling of a bursa behind the knee joint. It may be caused by other damage already in the knee and typically there is no true treatment plan. If it becomes too painful and discomforting, then is may be drained and a cortisone shot could be used but in most cases it either bursts internally or reduces on its own. Leg elevation, ice, and relaxation are usually the treatment plan.
Needless to say, I ran around from 8:30am to 5pm yesterday. Peabody to Dana Farber, check in, blood draw, check in again, oncologist appointment, check in again, back to blood draw, kill time in cafeteria for an hour waiting for an ultrasound, drive to Salem Hospital for knee ultrasound because Brigham nor Dana Farber could scan me, drive back home to Peabody just in time to see my mom arriving with Gabriel from daycare. If the cancer doesn’t kill me, the running around will.
So in a nutshell, I’ve gone from having a blood disease to now having a blood disorder. I have a royal pain in my knee instead of my ass. My doctors are shocked yet happy I’m alive, so everything else is gravy.
That’s all for now. I hope to get back to telling tales of my experiences in the hospital during my stem cell transplant soon. It seems like life keeps getting the way. Be well!
~Cheers!
Friday, July 9, 2010
Hello Summer!
Welcome to the summer edition of Living with Lymphoma. You were probably hoping I would stay away, but I’m back!
In cancer related news, thankfully I am still in full remission. Biopsy stitches are removed and the area is healing well. Red blood cells and platelet counts are low, so next week I’ll find out if they’ve recovered or if I need a transfusion.
The American Cancer Society (ACS) Relay for Life was a huge success. I have to thank my team, Shawn, Sue, Marie, Jenifer, Jamie, Haley, Meghan, and Laurie. We raised just shy of $3,000 as a team and will be noted a Bronze medal team by the ACS. We are already planning for next year’s walk. How to fundraise better, make the campsite better, and how to recruit more members. It was an awesome experience and am excited to participate again. Thank you to all my friends, family and companies who contributed time and money to making the event such a success.
In non-cancer related yes still medical news, knee surgery could be in my future. There is a snapping, stiffness, and pain in my left knee. For those who know don’t, I have had 3 surgeries on my right knee including a complete ACL reconstruction. The left knee has carried the load (no pun intended) for 15 years now and it was bound to give way eventually. My oncologist checked out the knee and it definitely isn’t drug or steroid related. Hence, I have an appointment at the end of the month with a orthopedic specialist.
The back is still sore and I should have gone back to physical therapy by now. However I am waiting find out about my knee. Can’t stand, walk, or do much of anything for more than 30 minutes without the back flaring up.
Outside the medical world, things aren’t too shabby. Finally passed papers on the short sale for the house in Dracut. Starting to look into new living arrangements to get me some privacy but still stay close to home in case of medical emergencies concerning myself or my parents. I also decided I can’t hide in my bedroom forever and have been separated long enough, so it is finally time to start dating.
My father was nominated and elected the new Master of Jordan Lodge in Peabody and has asked me join his line of officers as chaplain. Of course, I accepted. This will require the purchase of a tuxedo, but it will be worth it. My brethren in the Masons have helped me a great deal and I am looking forward to the opportunity to sit with my father and take on an active role in lodge.
Has always my son is amazing. He is growing like a weed, talking up a storm, wanting to read, and learning to swim. There are just not enough words to describe how I feel for my son. Gabe…Daddy loves you!
Ok, so this has become a slightly long post. Hadn’t written in a while. Sorry to drag on. Hope everyone is enjoying their summer. The fire pit will be open in the backyard soon.
~Cheers!
Adam
In cancer related news, thankfully I am still in full remission. Biopsy stitches are removed and the area is healing well. Red blood cells and platelet counts are low, so next week I’ll find out if they’ve recovered or if I need a transfusion.
The American Cancer Society (ACS) Relay for Life was a huge success. I have to thank my team, Shawn, Sue, Marie, Jenifer, Jamie, Haley, Meghan, and Laurie. We raised just shy of $3,000 as a team and will be noted a Bronze medal team by the ACS. We are already planning for next year’s walk. How to fundraise better, make the campsite better, and how to recruit more members. It was an awesome experience and am excited to participate again. Thank you to all my friends, family and companies who contributed time and money to making the event such a success.
In non-cancer related yes still medical news, knee surgery could be in my future. There is a snapping, stiffness, and pain in my left knee. For those who know don’t, I have had 3 surgeries on my right knee including a complete ACL reconstruction. The left knee has carried the load (no pun intended) for 15 years now and it was bound to give way eventually. My oncologist checked out the knee and it definitely isn’t drug or steroid related. Hence, I have an appointment at the end of the month with a orthopedic specialist.
The back is still sore and I should have gone back to physical therapy by now. However I am waiting find out about my knee. Can’t stand, walk, or do much of anything for more than 30 minutes without the back flaring up.
Outside the medical world, things aren’t too shabby. Finally passed papers on the short sale for the house in Dracut. Starting to look into new living arrangements to get me some privacy but still stay close to home in case of medical emergencies concerning myself or my parents. I also decided I can’t hide in my bedroom forever and have been separated long enough, so it is finally time to start dating.
My father was nominated and elected the new Master of Jordan Lodge in Peabody and has asked me join his line of officers as chaplain. Of course, I accepted. This will require the purchase of a tuxedo, but it will be worth it. My brethren in the Masons have helped me a great deal and I am looking forward to the opportunity to sit with my father and take on an active role in lodge.
Has always my son is amazing. He is growing like a weed, talking up a storm, wanting to read, and learning to swim. There are just not enough words to describe how I feel for my son. Gabe…Daddy loves you!
Ok, so this has become a slightly long post. Hadn’t written in a while. Sorry to drag on. Hope everyone is enjoying their summer. The fire pit will be open in the backyard soon.
~Cheers!
Adam
Sunday, June 13, 2010
Tears of Joy
Whoever says doctors don’t work on the weekend, obviously has never had cancer and haven’t met my amazing oncologists from Dana Farber and Brigham & Women’s hospitals of Boston.
I received the best news possible. My oncologist just called (yes on a Sunday night) to inform me, that all the biopsy results are complete and I am still in complete remission. My world can finally start turning again.
I am not a patient person, so waiting to find out if I was about to battle cancer all over again was horrible. The past six weeks were absolute torture. There was no relief for the havoc my stomach went through worrying. There was no pill strong enough to give me a good night’s or on some occasions any sleep at all.
In the past six weeks, I questioned my faith in life, my strength to fight and my will to want to continue if the results were different. Luckily, I am no longer in a position to worry about these things.
I want to thank my parents for putting up with my horrible disposition during this time. I want to thank all the prayers from family and friends. I want to thank my brother for his willingness to travel back to Boston on a drop of a dime to give me another transplant if necessary. And of course, my beautiful son, Gabriel, who can always make me smile.
There are no right words to truly describe my happiness at the moment. Needless to say, I will probably end up crying myself to sleep again tonight, but it will be for much better reason.
~Cheers,
Adam
I received the best news possible. My oncologist just called (yes on a Sunday night) to inform me, that all the biopsy results are complete and I am still in complete remission. My world can finally start turning again.
I am not a patient person, so waiting to find out if I was about to battle cancer all over again was horrible. The past six weeks were absolute torture. There was no relief for the havoc my stomach went through worrying. There was no pill strong enough to give me a good night’s or on some occasions any sleep at all.
In the past six weeks, I questioned my faith in life, my strength to fight and my will to want to continue if the results were different. Luckily, I am no longer in a position to worry about these things.
I want to thank my parents for putting up with my horrible disposition during this time. I want to thank all the prayers from family and friends. I want to thank my brother for his willingness to travel back to Boston on a drop of a dime to give me another transplant if necessary. And of course, my beautiful son, Gabriel, who can always make me smile.
There are no right words to truly describe my happiness at the moment. Needless to say, I will probably end up crying myself to sleep again tonight, but it will be for much better reason.
~Cheers,
Adam
Tuesday, June 8, 2010
Fear the Reaper
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
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
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
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