There are all sort of calendars and birthdays. For instance, I celebrate 3 birthdays. On May 19th, I celebrate my actual birth into existence. November 18th is my Masonic birthday. The day of which I was raised to the Master Mason level of Free Masonry. And lastly, October 23rd…my 2nd birthday since receiving stem cells in 2008. As this date is rapidly approaching, I feel it is time to reflect on my past year’s events and progress as well as setbacks.
Thankfully, I no longer wear a surgical mask or gloves when leaving the house. I can freely attend parties, visit the mall, movies, restaurants and even travel on public transportation, subways, buses, boats, and airplanes. My oncologists still advise me to visit and travel these places during lower traffic hours, as my immune system will always be compromised. That is where good ole’ fashioned common sense comes into play.
I was able to participate in Gabriel’s Halloween parade and his 3rd birthday party. I went on field trips with this school. I read his class books and attended Father’s day and other school events. We met Santa Claus together and went on 2 duck tours. I watched him learn how to write his name, order for himself at a restaurant, become potty trained, built Lego towers taller than me, and just enjoy being a kid, playful and free.
I got on a plane for the first time in 2 years and traveled to St. Louis to visit my brother, Beau, and his family. He allowed me to get drunk, no matter how obnoxious I became. He introduced me to his Methodist church and took me to an awesome Mongolian grill and kick-butt Super Bowl party.
Proudly, I was raised to the 3rd degree of Free Masonry by my father. It was an honor for him to do so and now I sit beside him in the East of our lodge as Master and Chaplain. The Free Masons are an unbelievable group. Sad to think, that if I had never gotten sick, I would not have had the time nor inclination to get involved. Some things do happen for a reason and I am thankful for this one.
I have attempted to be here for my parents as they are ill as well. I know they take allot of verbal abuse from me and I need to find a better outlet for my ongoing frustrations. They both do so much to help me on a daily basis from dealing with Gabe, feeding me, and not to mention giving me a place to sleep. Perhaps my newest endeavour into the world of Reiki will calm my nerves, so I may focus my energy on positive thoughts and stop taking life out on the one‘s I love.
Lastly, my health is what it is. Blood work is stable for the first time in 2 years. My overall cholesterol is the best it has been in a decade. I have a left knee that will undoubtedly need to replaced at some point in the near future. My back compensates for the balky knee causing daily pain. However, given these physical setbacks, I am mentally strong and ready to take on the world.
On November 4th, there is a hearing date in front a judge for my divorce. Gabe will always be my son but his mother and I can finally move on with our individual lives. My life…what will I do with the time I am now given?
As I mentioned, I am beginning Reiki 1. I am compiling my journal and blog entries into an eventual book. I continue to create and try new recipes for another eventual cook book (possibly co-written with my mother). I aspire to be a better father, son, brother, co-worker, friend, and person. Nothing in life is set in stone, but if you are waiting for a hand out…you might as well just step out of line.
I wish all my family and friends a happy fall season. This is the best time of the year. Best foods, cool weather, outdoor fire pits, changing of the trees, good times and good friends.
~Cheers
Monday, October 11, 2010
Wednesday, August 25, 2010
Man in the box
“I'm the man in the box
Buried in my sh*t
Won't you come and save me, save me” - Alice in Chains, Man in the Box
This is how I felt twice a day for 4 days during the conditioning process for the stem cell transplant. Allow me to indulge you.
As mentioned in the past, conditioning for the stem cell transplant takes place during the first 7 days of admission to the hospital. Two days of chemotherapy (citoxan) and 4 days (7 treatments in total) of double day full body radiation.
At 9am, my nurse rolled into my fish bowl of a hospital room with a wheelchair, blanket, my chart and bucket (in case I threw up). We would take the elevator down to radiology. To help relax, I would bring CD’s for my listening pleasure during my 30 minutes of radiation.
The radiology nurse laid me down on a flat table. She would place a plastic see-through box over my face (apparently the mind is a terrible thing to waste or in this case radiate) and then she high-tailed it out to the safe-bunker and flipped the switch. The X-ray light turned on, a buzzing in the room began, and so did my sobs. It felt kind of a tanning bed but with much a different end result.
This process repeated itself at 4pm. And then 9am. And then 4pm. And every time, no matter how well I was prepared or what music I brought, I cried. Tears streamed down my cheeks, while the buzzing continued and that stupid X-ray light flickered in the corner of my eye.
I cried for my son growing up father-less. I cried for my parents who would have to bury their youngest son. I cried for my brother, who was giving me his blood in an attempt to save my life. I cried because I was terrified. I cried like a baby. I cried because I needed hope. But whatever I cried for, no resolution was found in that f*cking box over my head.
Helpless, hopeless, and in disbelief. I was “the” man in the box. Buried in sh*t. And no one came to save me. I was alone. In some aspects, I still am. Don’t take this as a cry for pity or attention, just the way I feel at times. Don’t feel sorry for me. Nobody brought this on. People everyday are fighting the same battle. We don’t want or need your pity, just your support and sometimes our space.
I said this was going to get real. Here comes the pain. My pain. It may be slow coming, but it will come.
~Cheers
Adam
Buried in my sh*t
Won't you come and save me, save me” - Alice in Chains, Man in the Box
This is how I felt twice a day for 4 days during the conditioning process for the stem cell transplant. Allow me to indulge you.
As mentioned in the past, conditioning for the stem cell transplant takes place during the first 7 days of admission to the hospital. Two days of chemotherapy (citoxan) and 4 days (7 treatments in total) of double day full body radiation.
At 9am, my nurse rolled into my fish bowl of a hospital room with a wheelchair, blanket, my chart and bucket (in case I threw up). We would take the elevator down to radiology. To help relax, I would bring CD’s for my listening pleasure during my 30 minutes of radiation.
The radiology nurse laid me down on a flat table. She would place a plastic see-through box over my face (apparently the mind is a terrible thing to waste or in this case radiate) and then she high-tailed it out to the safe-bunker and flipped the switch. The X-ray light turned on, a buzzing in the room began, and so did my sobs. It felt kind of a tanning bed but with much a different end result.
This process repeated itself at 4pm. And then 9am. And then 4pm. And every time, no matter how well I was prepared or what music I brought, I cried. Tears streamed down my cheeks, while the buzzing continued and that stupid X-ray light flickered in the corner of my eye.
I cried for my son growing up father-less. I cried for my parents who would have to bury their youngest son. I cried for my brother, who was giving me his blood in an attempt to save my life. I cried because I was terrified. I cried like a baby. I cried because I needed hope. But whatever I cried for, no resolution was found in that f*cking box over my head.
Helpless, hopeless, and in disbelief. I was “the” man in the box. Buried in sh*t. And no one came to save me. I was alone. In some aspects, I still am. Don’t take this as a cry for pity or attention, just the way I feel at times. Don’t feel sorry for me. Nobody brought this on. People everyday are fighting the same battle. We don’t want or need your pity, just your support and sometimes our space.
I said this was going to get real. Here comes the pain. My pain. It may be slow coming, but it will come.
~Cheers
Adam
Thursday, July 29, 2010
Update and prayers
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
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
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
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