Cancer Funds For James Johannessen
Donation protected
December 23, 2012
I was diagnosed with Squamous Cell Carcinoma. A long word for throat cancer. My prognosis was good and I had high hopes of following in my father's footsteps as he had the same cancer 5 years prior to my diagnosis and had beat it and was living cancer free.
My treatment started in January with chemotherapy and radiation. For eight weeks at what should have been lunchtime I was strapped into the machine and zapped. Locked in place on a table while this mechanical monster of a machine stopped in nine predetermined stops - flooding my neck with radiation. Once a week I sat in a chair at Morton Plant Hospital while they fed me via IV Erbitux - a new standard for treating SC with the HPV16 code. My face looked like I'd been hit with birdshot from a shotgun at close range - No I don't hunt with Dick Cheney.
The end result was a clear PET scan in April of 2013 and I thought I was fixed and in the clear - after all my father beat it why should the son be different? I started living my life and forgot about cancer and scans.
August 2014
I had been feeling poorly and was coughing - I went to the Doctor and because of the history they scanned me - it came out clear. Then I spoke to Linda-Gayle, my step mother and she asked if they scanned my lungs. "Why check the lungs" I asked. Hesitantly she said "because that is where it goes if the cancer comes back and it's very bad if it does." Well, later that week we went back and rescanned my lungs and there they were - three tumors in my lungs. We sat in the Doctor's office and listened for hope and a fix or a way out. We got none of these from this guy - I asked after thirty minutes of light dialog "so how do we fix this as I have children depending on my being here." His response haunts me - "oh I can't fix this - I can buy you some time to get your house in order but there is no fix." NO FIX? NO FIX? The air left the room in an huge sucking sound that felt as though I had just died. How do you say that and not prep the patient to hear those words? Never the less there it was. Diagnosis - DEATH.
Tiffany sat stunned and for once had no words - I had no words and although I kinda always thought one day I would die at 48 with two young girls at home and a son that hadn't quite resolved our issues - it was as if I'd landed on the dark side of the moon. The waves of emotion that rolled over my body like a wild animal caught in a trap. I yanked and tore at my soul until I came to the conclusion that I had to face my no win situation NOW. The only hope I had was to get into a study at Moffitt in Tampa and hope there was something new that was working for people like me.
Moffitt qualified me for a study Merck and a treatment schedule was ordered.
Tiffany and I go to Tampa every three weeks and every eight weeks I get scanned. I have been infused with a trial drug now 4 times and they say I have stabilized. This means I am not getting worse nor better. Not getting worse is the most beautiful thing I could hear other than the tumors are gone and I am once again cancer free.
I recognize this is the season for miracles and I need one. I appreciate you reading my story and understanding how even the smallest donation helps us make it through this - your helping me but really it's for my family. They are in this with me till the end and while it is happening to me - it is they that will need your love and support while they pour their love and energy out supporting me. Thank you and know you are helping just by reading my posts.
I was diagnosed with Squamous Cell Carcinoma. A long word for throat cancer. My prognosis was good and I had high hopes of following in my father's footsteps as he had the same cancer 5 years prior to my diagnosis and had beat it and was living cancer free.
My treatment started in January with chemotherapy and radiation. For eight weeks at what should have been lunchtime I was strapped into the machine and zapped. Locked in place on a table while this mechanical monster of a machine stopped in nine predetermined stops - flooding my neck with radiation. Once a week I sat in a chair at Morton Plant Hospital while they fed me via IV Erbitux - a new standard for treating SC with the HPV16 code. My face looked like I'd been hit with birdshot from a shotgun at close range - No I don't hunt with Dick Cheney.
The end result was a clear PET scan in April of 2013 and I thought I was fixed and in the clear - after all my father beat it why should the son be different? I started living my life and forgot about cancer and scans.
August 2014
I had been feeling poorly and was coughing - I went to the Doctor and because of the history they scanned me - it came out clear. Then I spoke to Linda-Gayle, my step mother and she asked if they scanned my lungs. "Why check the lungs" I asked. Hesitantly she said "because that is where it goes if the cancer comes back and it's very bad if it does." Well, later that week we went back and rescanned my lungs and there they were - three tumors in my lungs. We sat in the Doctor's office and listened for hope and a fix or a way out. We got none of these from this guy - I asked after thirty minutes of light dialog "so how do we fix this as I have children depending on my being here." His response haunts me - "oh I can't fix this - I can buy you some time to get your house in order but there is no fix." NO FIX? NO FIX? The air left the room in an huge sucking sound that felt as though I had just died. How do you say that and not prep the patient to hear those words? Never the less there it was. Diagnosis - DEATH.
Tiffany sat stunned and for once had no words - I had no words and although I kinda always thought one day I would die at 48 with two young girls at home and a son that hadn't quite resolved our issues - it was as if I'd landed on the dark side of the moon. The waves of emotion that rolled over my body like a wild animal caught in a trap. I yanked and tore at my soul until I came to the conclusion that I had to face my no win situation NOW. The only hope I had was to get into a study at Moffitt in Tampa and hope there was something new that was working for people like me.
Moffitt qualified me for a study Merck and a treatment schedule was ordered.
Tiffany and I go to Tampa every three weeks and every eight weeks I get scanned. I have been infused with a trial drug now 4 times and they say I have stabilized. This means I am not getting worse nor better. Not getting worse is the most beautiful thing I could hear other than the tumors are gone and I am once again cancer free.
I recognize this is the season for miracles and I need one. I appreciate you reading my story and understanding how even the smallest donation helps us make it through this - your helping me but really it's for my family. They are in this with me till the end and while it is happening to me - it is they that will need your love and support while they pour their love and energy out supporting me. Thank you and know you are helping just by reading my posts.
Organizer
James Johannessen
Organizer
Melbourne, FL