“Life is what happens to you while you are busy making other plans”. --John Lennon
Most patients, who are fighting Mantle Cell Lymphoma, don’t survive 4 years past diagnosis with or without treatment. I was diagnosed in April of 2008 and am still alive and sitting. So much for statistics! However, I am in no shape to resume a full-time job or start a new rugby career, but there are few things I may like to accomplish.
Everyone has heard fables of the hypothetical ‘bucket list’. Hence, the list of things you’d like to do before you die (kick the bucket).
I never gave a bucket list much thought. I was always too concerned with surviving than living. It didn’t hit home until 7 months ago, that I never moved past the treatments even though they had ended. My life was cancer, instead of cancer just being a part of my life. I returned to therapy and am now setting goals and making a list. This provides me with structure and something to focus my energy and time towards.
After I recover from knee/leg surgery, game is on! Technically, the list has already started. I participated in a food challenge. I didn’t complete it, but I competed. Now I just need to win one. Captained 3 Relay for Life teams, increasing our goals every year. I traveled to St. Louis for a beer festival. I played in a rock n’ roll band, which performed at the Waterfront in Boston, and recorded a demo. Not a bad start.
I want to run or walk a 5K. I want to travel to England, California, and Alaska. I want to eat a Bacon Waffle at the Magnolia Pancake Haus in San Antonio. Make a hole in one (on a real course, not mini-golf). Take Gabe to the beach. Try goat. Some will be easier than others, but I have nothing to lose and only great experiences to gain.
As Ferris Bueller would say, “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.”
Be spontaneous. Enjoy life. Enjoy your family and friends. Try new things. Laugh often and loud. And always be proud of who you are.
Cheers!
Monday, July 16, 2012
Tuesday, July 10, 2012
Reality Check
Morning: Wake up and take 1 pill. Wait 30 minutes. Take 2 pills. Wait 30 minutes. Take 1 pill. Wait 30 minutes. Start breakfast. Halfway through breakfast take disgusting, thick, yellow suspension liquid. Complete breakfast. Take the remaining 7 pills. Now, I can start my day.
Noon: Take 2 pills. Wait 30-45 minutes. Have lunch. Take 4 more pills. Go back to my day.
Dinner: Start eating. Halfway through eating enjoy another spoonful of the yellow liquid. Finish eating and relax until the sun sets.
Evening: 2 hours after my evening snack, take 2 more pills. Wait 30-45 minutes. Take 5 more pills.
Bedtime: Before I lay down to sleep, I take 1 sleeping pill. This will complete my daily medication cycle.
Of course, there are those days when I need to take nausea, bowel, anxiety, or pain medication. I can rack up another 4-6 pills easily. In the chance, I come down with thrush, a fungal mouth disease, there is a swish and swallow suspension I can use as well.
Then, toss in (and don’t laugh), showering, using the bathroom (on a more than normal basis), picking up, dropping off, and taking care of my son, going to appointments, errands, Masonry, and occasionally doing something for myself, it makes for a busy schedule.
When the public sees a young man walking with a cane, they assume he wants to set a trend or look cool. They don’t see the heavy duty brace on my knee. They don’t see the cancer scars on my calf and ankle. They don’t see the fractured back. They don’t see the hidden scars, the hidden pain, the hidden child scared to death he won’t see the light of the morning star.
Don’t pity me. Don’t say you’re sorry. I don’t want special treatment. I just want to be normal. Whatever that may be.
Cheers!
Sunday, July 8, 2012
The Wheelchair isn't just for Show.
Whether you are comfortable with the term handicap, handicapped, impaired, or disabled, they are words of similar meaning. Given the most recent setbacks concerning my legs and knees, I obtained a handicapped placard. It should allow me to park closer to buildings, making walking less labor intensive.
Although, I possessed the placard for less than a month, I have noticed the common public’s blatant disregard towards the disabled for decades. My father has dealt with this behavior for nearly 30 years after his right knee was fused in 1982.
Here are two examples from just last week. I went to the grocery market and attempted to park in the last available handicapped spot. When I went to pull in, the young carriage boy had collected all the grocery carts into the spot making it impossible to park. I was far too dismayed, when the young man finally noticed me waiting in my car, so I drove away.
Secondly, Gabe goes to a day care center inside a small strip mall that also includes a Dunkin’ Donuts, pizza shop, convenient store, and karate studio. There are limited handicapped spots in the lot. I pull in to drop Gabe off Friday morning and a stone mason’s truck is parked on the outside yellow striped lines next to the handicapped spots. How in the blue hell does this help a disabled individual if they have a van or truck with a wheel chair or walker? I’m sorry that you need your caffeine fix so badly, you care so little for the disabled veterans, the elderly, or medical patients who actually need those spaces for a reason. Maybe you could do us all a favor and drive off a cliff.
Last night at the mall was my most recent incident to report. I circled the parking lot 6 times to find a spot; handicapped or otherwise. My placard was up on the window and I eyed a space close enough to comfortably walk from, but a large SUV looking directly at me (with hanging placard) decided to disregard my need for that spot and cut me off. I did finally find a spot. However, the greatest public display of reckless abandonment consisted of the sarcastic jabs I took from the hostess about getting a table close to the door. (That, I did not request.) “Sir is close enough? Is it too much of a walk for you. Do you think you’ll make it? Ha, ha, ha.” Go F’ck yourself!
I don’t use this forum to bitch often but I feel the general public needs to be put on notice that this handicapped person is going to start throwing cane shots at ignorant fools.
On that note, I hope everyone had a happy and safe 4th of July. Love to my supporters and a middle finger to the haters.
~Cheers!
Although, I possessed the placard for less than a month, I have noticed the common public’s blatant disregard towards the disabled for decades. My father has dealt with this behavior for nearly 30 years after his right knee was fused in 1982.
Here are two examples from just last week. I went to the grocery market and attempted to park in the last available handicapped spot. When I went to pull in, the young carriage boy had collected all the grocery carts into the spot making it impossible to park. I was far too dismayed, when the young man finally noticed me waiting in my car, so I drove away.
Secondly, Gabe goes to a day care center inside a small strip mall that also includes a Dunkin’ Donuts, pizza shop, convenient store, and karate studio. There are limited handicapped spots in the lot. I pull in to drop Gabe off Friday morning and a stone mason’s truck is parked on the outside yellow striped lines next to the handicapped spots. How in the blue hell does this help a disabled individual if they have a van or truck with a wheel chair or walker? I’m sorry that you need your caffeine fix so badly, you care so little for the disabled veterans, the elderly, or medical patients who actually need those spaces for a reason. Maybe you could do us all a favor and drive off a cliff.
Last night at the mall was my most recent incident to report. I circled the parking lot 6 times to find a spot; handicapped or otherwise. My placard was up on the window and I eyed a space close enough to comfortably walk from, but a large SUV looking directly at me (with hanging placard) decided to disregard my need for that spot and cut me off. I did finally find a spot. However, the greatest public display of reckless abandonment consisted of the sarcastic jabs I took from the hostess about getting a table close to the door. (That, I did not request.) “Sir is close enough? Is it too much of a walk for you. Do you think you’ll make it? Ha, ha, ha.” Go F’ck yourself!
I don’t use this forum to bitch often but I feel the general public needs to be put on notice that this handicapped person is going to start throwing cane shots at ignorant fools.
On that note, I hope everyone had a happy and safe 4th of July. Love to my supporters and a middle finger to the haters.
~Cheers!
Monday, June 25, 2012
Relief is on the way
Good afternoon to all, It has been a long time. Too long for me. Not long enough for some. For those familiar with me from facebook, you may know the happenings in my life. Most recently, my legs are the main focus. The pain has been ongoing for 2 years and it is time for a little relief.
Here is the short and long of it: Besides a minor meniscus tear in the left knee, structurally the knee is fine. The problem lies in the Femur, Tibia, and Fibula bones. I have what is called bone marrow necrosis. There is poor blood circulation, so the marrow is decaying. The bones are fracturing and collapsing almost like a pothole on a road. What seemed to be a minor problem a few years back, has become chronic.
The right knee has seen the operating room 3 times in the past 18 years. Two scopes and the ACL was reconstructed a decade ago. Since I now favor the left leg, the right ACL is tearing as well as my menial meniscus.
What's the plan you say? The surgeon plans to scope the right knee. Clean out the debris, drain the fluid and inject a cortizone shot. He will then scope the left knee to clean and assess the total damage. Then roll me on my stomach, extract a bone graft from my right hip, roll me again and insert pins and screws to support the bone and finally inject the bone graft into my bones; hopefully stimulating new bone growth. Once I stop favoring the left leg, the right knee should heal on its own. Much less invasive and straining, then my last 2 opinions who suggested full knee replacements in both legs.
As we say in lodge, "It is better to be seen, then viewed." Happiness comes in spurts as does pain. I try to live my life right. Be a good dad, a good son, good brother, and good friend. I give when I can and expect little in return.
Thank you to all my supporters. You know who you are and I love you all.
~Cheers
Here is the short and long of it: Besides a minor meniscus tear in the left knee, structurally the knee is fine. The problem lies in the Femur, Tibia, and Fibula bones. I have what is called bone marrow necrosis. There is poor blood circulation, so the marrow is decaying. The bones are fracturing and collapsing almost like a pothole on a road. What seemed to be a minor problem a few years back, has become chronic.
The right knee has seen the operating room 3 times in the past 18 years. Two scopes and the ACL was reconstructed a decade ago. Since I now favor the left leg, the right ACL is tearing as well as my menial meniscus.
What's the plan you say? The surgeon plans to scope the right knee. Clean out the debris, drain the fluid and inject a cortizone shot. He will then scope the left knee to clean and assess the total damage. Then roll me on my stomach, extract a bone graft from my right hip, roll me again and insert pins and screws to support the bone and finally inject the bone graft into my bones; hopefully stimulating new bone growth. Once I stop favoring the left leg, the right knee should heal on its own. Much less invasive and straining, then my last 2 opinions who suggested full knee replacements in both legs.
As we say in lodge, "It is better to be seen, then viewed." Happiness comes in spurts as does pain. I try to live my life right. Be a good dad, a good son, good brother, and good friend. I give when I can and expect little in return.
Thank you to all my supporters. You know who you are and I love you all.
~Cheers
Sunday, May 15, 2011
May 2011 update
Hello again. I’m not going to lie. The past four weeks were tough. Lazily, I’ve been using Facebook to give minor updates, but this forum is probably better.
Aside from the recent medical issues, my long term disability benefits were denied the first of the year and subsequently my employment terminated 60 days later. As the snowball continued to build momentum, medical benefits (for Gabe and me) ran out as of April 1st. After weeks of phone calls, applications, and letters, come June 1st I will finally be approved for a state prescription and insurance plan. Luckily, Gabe is now covered under his mother’s insurance.
Ok, ok… So, besides this past Friday the 13th (go figure), I can’t remember the last time I felt so tired and weak. Now, my platelet count had been dropping but it didn’t explain the tiredness. Due to my lack of insurance, I was avoiding getting labs drawn for financial reasons. My oncologists insisted I go and get blood done and we found my Hematocrit count (red blood cells) was dropping.
Since the stem cell transplant in Oct. of 2008, my Hematocrit level has always hovered around 29% (a little low but stable). The normal adult male range is 41-53%. Within the last 4 weeks, mine dropped from 29 to 22 to 19. This was alarm enough for my oncologists to draw 17 vials of blood for testing and order a three-pint blood transfusion last Friday. I also took an Immunoglobulin infusion Monday, followed reluctantly with my third bone marrow biopsy.
And the results are in… The transfusion pushed my Hematocrit level back up to 29%. All the blood work was inconclusive. The bone marrow showed no signs of lymphoma recurrence but an abnormality of blood cell development called dysplasia. Blood dysplasia usually occurs in cancer patients who have endured intense amounts of chemotherapy for long durations of time. I do not fall into this category, so again my doctors are left scratching their collective heads. For now, we get to keep running monthly blood tests and in 3-6 months perform another bone marrow biopsy.
It is annoying and frustrating but I am thankful it isn’t worse. My family continues to be amazing. My friends provide me with more support than I expect. And, of course, Gabriel is my shining star. There is still fight in this battered dog. I am not going anywhere soon.
~Cheers
Adam
Aside from the recent medical issues, my long term disability benefits were denied the first of the year and subsequently my employment terminated 60 days later. As the snowball continued to build momentum, medical benefits (for Gabe and me) ran out as of April 1st. After weeks of phone calls, applications, and letters, come June 1st I will finally be approved for a state prescription and insurance plan. Luckily, Gabe is now covered under his mother’s insurance.
Ok, ok… So, besides this past Friday the 13th (go figure), I can’t remember the last time I felt so tired and weak. Now, my platelet count had been dropping but it didn’t explain the tiredness. Due to my lack of insurance, I was avoiding getting labs drawn for financial reasons. My oncologists insisted I go and get blood done and we found my Hematocrit count (red blood cells) was dropping.
Since the stem cell transplant in Oct. of 2008, my Hematocrit level has always hovered around 29% (a little low but stable). The normal adult male range is 41-53%. Within the last 4 weeks, mine dropped from 29 to 22 to 19. This was alarm enough for my oncologists to draw 17 vials of blood for testing and order a three-pint blood transfusion last Friday. I also took an Immunoglobulin infusion Monday, followed reluctantly with my third bone marrow biopsy.
And the results are in… The transfusion pushed my Hematocrit level back up to 29%. All the blood work was inconclusive. The bone marrow showed no signs of lymphoma recurrence but an abnormality of blood cell development called dysplasia. Blood dysplasia usually occurs in cancer patients who have endured intense amounts of chemotherapy for long durations of time. I do not fall into this category, so again my doctors are left scratching their collective heads. For now, we get to keep running monthly blood tests and in 3-6 months perform another bone marrow biopsy.
It is annoying and frustrating but I am thankful it isn’t worse. My family continues to be amazing. My friends provide me with more support than I expect. And, of course, Gabriel is my shining star. There is still fight in this battered dog. I am not going anywhere soon.
~Cheers
Adam
Monday, April 11, 2011
Why do I Relay?
I am proud to be a cancer survivor and as such want to help all cancer survivors and patients celebrate more birthdays. My grandfather, uncle, father-in-law, close friends and so many more have been afflicted or lost to cancer. I know many who fight and live with cancer every day. I have seen the smiling faces of children with cancer at Dana Farber and the looks of horror on their parents' faces. Cancer could affect your parent, grandparent, son, daughter, friend, neighbor, co-worker or even yourself. Cancer doesn't sleep and isn't prejudice. I want to help and hope to someday find a cure.
I am walking in the American Cancer Society's Peabody Relay for Life for the 2nd year as the Team Captain of the Mantle Cell Marauders. I walk to give back. I walk because I care. I walk because some can't walk for themselves. I walk to show support. I walk because I am a survivor and want others to be as well.
Please help me, my team, and the American Cancer Society to find a cure. Help us to celebrate more birthdays. Help everyone who is a caregiver, provider, patient or survivor. Research is so crucial and we can't do it alone.
Donations can be time or money. No amount is too small and you could save a life. Copy and paste the link below to read about the event and help if you can.
Thank you and cheers,
Adam
http://main.acsevents.org/site/TR/RelayForLife/RFLFY11NE?team_id=840123&pg=team&fr_id=31173
I am walking in the American Cancer Society's Peabody Relay for Life for the 2nd year as the Team Captain of the Mantle Cell Marauders. I walk to give back. I walk because I care. I walk because some can't walk for themselves. I walk to show support. I walk because I am a survivor and want others to be as well.
Please help me, my team, and the American Cancer Society to find a cure. Help us to celebrate more birthdays. Help everyone who is a caregiver, provider, patient or survivor. Research is so crucial and we can't do it alone.
Donations can be time or money. No amount is too small and you could save a life. Copy and paste the link below to read about the event and help if you can.
Thank you and cheers,
Adam
http://main.acsevents.org/site/TR/RelayForLife/RFLFY11NE?team_id=840123&pg=team&fr_id=31173
Friday, March 4, 2011
Bit of a Vent
I am by no means “busy” but I do belong to a few groups and keep a steady schedule with my son. I noticed a revelation yesterday when I was reviewing my calendar for March. Upon viewing the pages, there are no medical appointments for the month. I have an MRI, blood work, check-up, and a Lymphoma conference in April but nothing scheduled for March. This marks the first time in over 3 years, I will go one month without visiting a doctor or medical facility. Of course, this might change but I am keeping my fingers crossed.
Life is filled with ying and yang, give and take, push and pull. You get the idea… By the end of March, my employment with Suntrust will officially be terminated. My position was unprotected and I need to reapply for employment with the company. The problem being the closest open position in the company is over 350 miles away in Baltimore. That won’t cut it.
Here is the point.
When my employment is terminated, I will have the option to keep medical insurance through COBRA. Anyone who is on unemployment already knows, COBRA charges through the ceiling. In my attempt to be proactive, I have applied for Medicare and MassHealth. So although, I have no appointments in March, I am hoping to find a way to keep my appointments in April and still afford coverage for Gabe and my list of prescription medications.
I continue to look for work, through the paper, internet, and friends. Social Security gets me by, but a full-time job would be much better. Supposedly I am eligible for unemployment benefits, so I may be able to subsidize my income there. It is a nerve racking waiting game.
Back on the bright side, my health isn’t getting better or worse. I can live with that. Some days are greener than others, and as we say at lodge, “It is better to be seen, than viewed.”
This was more of a vent than anything informational but thanks for reading.
~Cheers
Adam
Life is filled with ying and yang, give and take, push and pull. You get the idea… By the end of March, my employment with Suntrust will officially be terminated. My position was unprotected and I need to reapply for employment with the company. The problem being the closest open position in the company is over 350 miles away in Baltimore. That won’t cut it.
Here is the point.
When my employment is terminated, I will have the option to keep medical insurance through COBRA. Anyone who is on unemployment already knows, COBRA charges through the ceiling. In my attempt to be proactive, I have applied for Medicare and MassHealth. So although, I have no appointments in March, I am hoping to find a way to keep my appointments in April and still afford coverage for Gabe and my list of prescription medications.
I continue to look for work, through the paper, internet, and friends. Social Security gets me by, but a full-time job would be much better. Supposedly I am eligible for unemployment benefits, so I may be able to subsidize my income there. It is a nerve racking waiting game.
Back on the bright side, my health isn’t getting better or worse. I can live with that. Some days are greener than others, and as we say at lodge, “It is better to be seen, than viewed.”
This was more of a vent than anything informational but thanks for reading.
~Cheers
Adam
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