By Barry Butler
This is My Journey Starting with the Day of my Cancer Diagnosis to NOW. It started out as that but somehow I got lost along the way and went way back to the beginning of ME….Who was I and what made me tick. How I ever got to be 72 years old and what were the things that made me who I am today. Things that I learned about life and cancer. I’m not a professional writer so this is messy at times as I go back and forth and spout out my so called wisdom and folly. ALSO, I started to realize that my Life and Cancer were other peoples lives also and maybe a few people could relate. SO this down below is a bit disjointed and messy but it’s My Mess and it’s at times just a Flight of Ideas. SO if you bare with me maybe you can find a bit of yourself here…..your hopes and dreams and what scares the hell out of you and how you got here and where are you going….
THIS is just the Beginning of My Story and Journey. I’m writing it a little at a time so keep checking back….I’m going to put this on a Special Page so stay tuned. Not sure anybody is interested in MY Cancer and Life Story but maybe people can relate….Barry.
Four years ago this coming September I was sitting and waiting for for The Surgeon who did the biopsy on some lumps I found on my neck (that were freaking me out) to come in. I remember being nervous, sweating like a pig and in a Daze. The room was spinning around like a top. I was hoping for the best BUT Not really ready for the worst….BUT in a few minutes D. P MD. came in in a white coat and looked down at me and said Mr. Butler you have B Cell Lymphoma. The room got really hot and my sweating got worse as rings were forming on my shirt under my arms. I could feel my heart pounding a mile a minute as I sat there. He didn’t tell me anything about the type of cancer as that really wasn’t his job. I vaguely remember he was telling me he was going to bring up my Case and Biopsy with the TUMOR BOARD…….HuH did I hear him say THE TUMOR BOARD ? I imagined this big room with a huge table where all these Docs sat around and talked about Tumors…..UGH OYE and NO WAY JOSE…..I got up and started for the door and Doc grabbed me and told me to sit back down. He could see that I was ready for a Stroke and put his hand on my shoulder and said he would give me a referral for one of the 2 Oncologist in my town….I started to sweat even more now and drops were forming at the end of my nose……I remember saying NO Oncologist. Every since I watched my Mom and Friend die from side effects from chemo I swore I would never do it. I decided I was going to take the biopsy report and go home and study everything I could for the next week….I told him I had decided long ago that if I got cancer I wouldn’t do chemo…..I got up and started for the door again and he went and shut the door and told me to sit back down. He said two words. RAW FOODS….
SO I sat back down. I just stared at him as I was trying to calm down. The Tumor Board crap completely freaked me out and I didn’t want anything to do with them even IF they could help. My help was to head to the nearest Bar and get plastered BUT I was driving….I still had to go home and tell my lovely wife Suzanne about this and that the thought of that Scenario was AWFUL. He looked at me and told me that he did many cancer surgeries and has many patients come back to him years later after Chemo and Radiation and Clinical Trials and the Cancer was back and they were running out of options and they would ask him if he knew anything else they could try. HE is the most Compassionate and Loving guy so I can see why people come back to him. NOW he is not a GP but he told me that IF I didn’t go to see an Oncologist I’d have a hard time in this small town finding a regular doc to see me for anything. He then told me that he would see me as a Regular Patient under Special Circumstances….Said he was interested in my case and liked me….THAT really made me feel good.
He told me that there was a lot of studies that Raw Plant Foods are very Healing and that if I wasn’t going to go the chemo route I should try and incorporate that type of diet. He told me to get a juicer and make carrot juice and mix other veggies with it…..He told me to LIVE MY LIFE and to PRAY a lot. HE was a LOVER of Jesus and after he told me all this he called in his Nurse and asked me if he could pray with and for me? What could I say NO? So the three of us held hands and he prayed to Jesus to heal me. I was shocked at this and had tears in my eyes and had the goose bumps and really didn’t know what to make of it all. He didn’t offer me any false hope but what he did was GIVE ME HOPE….I shook his hand and he pulled me in and gave me a hug and said again…LIVE YOUR LIFE and come back in a month and he’d check me out. He said to come back when I needed him even if it was just to talk. I slowly headed out the door to my car with the horrible thought that I had to tell Suzanne. I got in my 2003 Chevy S 10 truck, switched on the ignition and headed on home to Tell Suzanne the bad news….MORE TO FOLLOW LATER KEEP POSTED…
It was 1965 and I was at the U of Miami in Coral Gables Florida. I originally went to Bridgeport U but flunked out in one Semester so I enrolled in Miami as a new student and started as a beginning Freshman. I played Basketball there until I got Mono and had to stop. It was the first time I wasn’t playing basketball since I was five years old and to say I was lost was an understatement. My entire identity was wrapped up as a basketball player. I was a star in my small town of Merrick, Long Island and was a first stringer in my Sophmore Year….I didn’t know till many years after my Mom died that she kept a scrap book with clippings from the newspapers of me in photos and articles and box scores. I LOVED my Mom but was amazed at this as she never told me. Maybe she was going to surprise me at a later date but she never had the chance.
I needed something new to do and found it in Music and Songwriting and Singing. I was in multiple bands in Miami and really got going. I played a bass guitar like Paul and really thought I was going to be the Next Beatles (Like so many others)….but it was not to be. When I went home at the end of that year I found out that my Mom had Breast Cancer and I was devastated. I remember that day like it was yesterday and it made a profound impact on my life….I went with her to Alabama to a cancer clinic run by a third cousin and she really didn’t know any of them but went…..I went with her because my Dad either chickened out or lied about not being able to get away from work….Yeah Right….he owned his own Printing Company…..So off we went and stayed at a small Hotel next to the Clinic. She went through a battery of tests and scans and her Cousin’s Wife came out and told me that SHE was full of cancer….I was 20 and really was horrified. That night in the Motel I remember asking my Mom if she was going to die and she asurred me that she was not. I believed everything my mom told me but the tear in the corner of her eye told me that NO she was probably going to die. She had been having lots of bone pain etc after a Mastectomy and the Doctors kept telling her lies and that is was just bursitis. We packed up in the Morning and went back to the airport and went home both of us lost in our own thoughts……
When we got home my Dad told my Mom that there was this great Teaching Cancer Hospital in Buffalo called Roswell Park Hospital. It supposedly had the most up do date drugs and therapies and it was free. The problem with it was that it was about 400 miles from where we lived and I couldn’t understand why she had to go so far away. But that is where she went and I only got to see her a few times before she died. My sister and I took a Train there for the last time in September of 1966 and it was the last time I saw her. I remember that she was so out of it that she told me she was going up to the eighth floor to get the cure. As I was getting ready to go home that last time she told me “BARRY TAKE CARE OF YOUR SISTER AND YOUR DAD”….HUH…? I couldn’t wrap my head around that as I was a young guy. The train ride home was LONG and my sister and I were lost in our own thoughts. I was 20 and she was 16. When she was admitted about a month ago she was walking and talking and seemed fine and after whatever crap they gave her she turned into a vegetable.
Two weeks later I got a call from my Uncle Wally and he said that he had some bad news and that My Amazing and Wonderful Mom was gone…..I just sat there and then told him thanks. I put down the phone and went and told my sister and we cried our eyes out. But in a selfish way I was glad my mom was out of pain and the horror that everybody went through was over. She was the glue that held our family together and without her Me, My Dad and My Sister just didn’t get along….We had a huge fight after the Funeral because I wouldn’t attend. I only wanted to remember her as she was and not lying in a coffin buried in the ground….I pictured her smiling and telling me how much she loved me and how special I was and THAT is how I wanted to remember her…..A month later my Dad and Sister drover me to the Airport and went to basic Training at Fort Jackson……
I got home from Doctor Roquiz and just sat there in the driveway for a few minutes. After awhile Suzanne looked out of the window and saw me just sitting there and came out to the car. I told her what happened and we hugged. Neither of us knew much of what I had and I told her that before I decide what to do next I was going to research it. It’s called Marginal Zone, Nodal Non Hodgkin’s Lymphoma. Suzanne looked stunned but it’s hard to read her as she keeps her feelings to herself but it must have been awful. I was really in a state of shock and felt like my life and the living room were spinning. I slowly walked into my Den where I hang out and write and record my Songs…I sat down at the computer and looked it up….I found out that my kind of cancer was an Indolent Form (Slow Growing) but usually becomes more aggressive over time. WELL I was 68 at the time and I liked the sound of Slow Growing. I figured I had some time to try and do some things that may help me before I needed some kind of treatment. I always said I’d never do chemo BUT when the rubber meets the road sometimes reality hits and our strong convictions aren’t so strong. A year or so later I needed Radiation to my Spine at the sciatic nerve but that’s for later.
It’s easy giving advice to others but when it’s us it’s not so easy. For the moment I decided not to tell anybody about this. I really didn’t know too many people anyway as I’m sort of a recluse but there were a few. I just didn’t want to have to go through the story over and over again. It was especially hard as I wasn’t going to go to an Oncologist, at least for now, as I wasn’t buying what they were selling. I figured I’d write out the story and save it and then send it to people. I didn’t want to talk on the phone to anybody. I was scared out of my mind and couldn’t slow my brain down. I was trying to empty my head and slow my heart rate down but had no luck. I was hungry but felt like throwing up. I kept thinking of my wife all alone out there in the kitchen and wanted to go comfort her but I was just paralyzed. We were never that close and wondered if this would bring us closer. She didn’t share much about her life with me over the years as she is a very private person. She is amazing though as she never complains and is mostly cheerful especially in the morning. I’m a grump in the morning and she’s just the opposite. How was I going to explain to people why I wasn’t going to go to an Oncologist? I was no Doctor or Expert and if I was smart I’d go to get good advice from somebody who knows better than stupid me, but I’m pretty stubborn and ever since seeing my Mom die from the chemo I was scared of it…
Part of the Story is Down Below…AND More to come HERE…
OK….I started looking for Nutritional Answers on the Internet and the first place I came to was Chis Wark’s Site chrisbeatcancer and THAT was a God Send. I also found out my kind of cancer was really rare and a lot like Follicular NHL and so I got on a cool Group. Except for the stinking lumps on my neck I was ok. No other symptoms except a deranged brain. I write songs and for awhile I couldn’t write anymore but eventually started writing a lot about ME….One song was really significant for me called “DON’T RAIN ON MY PARADE”.
I was advised by a few Docs and Family and Friends to GO TO AN Oncologist but just the name gave me indigestion…lol…..SO I wrote this song to tell them how I felt.
I also wrote two songs about cancer called “THE MAGIC OF THE HEALING TREE” and BREAST CANCER, WOMEN & THE MEN WHO LOVE THEM”….
I Juiced for about a year and my wife insisted on helping me every morning because she was afraid I’d make a mess and she was right.. About a year into it she saw carrot juice dried and stuck on the ceiling and THAT was the last day we Juiced….
I was lucky to escape the Vietnam Fiasco because my Reserve Unit was never called up. I did my Basic at Fort Jackson in South Carolina and my AIT at Fort Devens outside Boston. It was part horror and part amazing. It made me grow up fast and made some good friends. I did 6 years with Monthly Weekend Meetings at Fort Tilden near Coney Island and Two Weeks Summer camp every summer. that all sucked but not have to go to NAM was worth it. While I was away for that 9 months my Father remarried to a woman half his age and moved into Manhattan right near is Business on East 40th street at Tudor City. SO when I came home I had no home. I never went back to the town where I spent all my school years and had all my friends and memories…..SO I felt kind of homeless and strange. My Dads new wife had a studio apartment on E 71st st. in Manhattan I moved in there. I can remember walking into this tiny studio apartment in the back of this 4 story building…and I mean tiny. I went from my beautiful home in Merrick to this tiny sad looking place and didn’t know a sole in NY. My dad and Natalie helped me with my bags, gave me a hug and said goodbye and left me there sitting on this lousy looking bed all alone…..just sitting there. I’ll never forget that feeling. It was very quiet as it was in the back of the building and I was just alone with so many thoughts crashing through my brain. I didn’t know what to do and as I sat there I started thinking about my Mom who died about a year before. She wouldn’t have stood for this but she was now in Heaven and I had to start my new life here. Tears started to flow and I just laid down and cried my eyes out till there were no more tears. My NEW Life was about to start and I didn’t have a road map…
I was ok till about 15 months ago when I developed Sciatica in both legs so bad I couldn’t sleep or walk and was scheduled to go to a Pain Doc to get an MRI and see if anything could be done. During that time I fell over and over and really hurt myself. Went to the ER on multiple occasions with no help… Since I refused to go to an Oncologist right at the get go I asked the Surgeon who was still seeing me as a regular patient to please put me in the Hospital to do the tests to see what was going on as I was falling all over the place and just miserable and he finally did just that. Three days in the Hospital and on Pain Meds they found that the MRI Showed cancer was impinging my Sciatic Nerve and that was the cause of all the pain…..I basically couldn’t walk without a walker and even with it I was in bad shape. On the third day a Radiation Oncologist came in and told me if I didn’t start radiation immediately I’d be paralyzed and I said OK…..THEN a very nice chemo Doc came in and gave me the same pitch and I very politely declined….They told me that my indolent cancer was NO MORE and I had the cancer all over and I was in big trouble. SO I had the Radiation and Strong Steroids over a two month period and it seemed to work because I’ve never got the pain back in 15 months. She tried to get me to go next door to the chemo docs but I kept refusing as I just dreaded doing it. After Radiating I had a Pet Scan and she said it didn’t look as bad as the MRI in the Hospital and if I didn’t want to talk to the Chemo Doc next door I should just come back to her in a month. SO I said OK and went on my merry way with my trusted walker…..SHE ordered PT at home for a few months and it helped my walking. BTW from the Decadron I guess all the lymph nodes disappeared from my neck and groin and under my arms also and that was pretty cool….. MORE…..I went back to her two months later for a check up and a new huge node grew in about a week behind my head by the neck that totally freaked me out. She saw it and actually gasped at the size and said we need to start more Radiation immediately UGH…While my Radiation on the sciatic nerve area didn’t give me any side effects except a little redness on my back I didn’t want to do it so soon. BTW they shot the radiation on my front and it went right through to the back. I wish they had a Proton Machine here but the closest one is two hours away in Tampa and Orlando SO I was stuck with the regular machine…..SO when she told me about more Radiation I asked if I could try a low dose of the Steroid (Decadron) for a few weeks to see if it would shrink the node by itself. She didn’t want me to but she relented….I had a cough at the time and she said she would send me for a chest x ray and if it was ok she’d let me try it….Well the cough was still there but the chest x ray didn’t show anything on my lung so I tried it for a few weeks with astounding success. In two weeks that huge node disappeared and has stayed gone for almost a year….BUT More trouble was looming on the horizon from that cough….It wouldn’t go away and I was coughing all day and night…No Fever and just the cough. I went to my regular Doc for another chest x ray and the lungs were clear…..and I just was hoping it would go away. I should have gone to a Lung Doc for a work up but I had had it with Doctors and was praying It would go away on its own…NO SUCH LUCK…Two months after it started around last September on a Sunday afternoon I got a fever of over 103 and became delirious. I fell and my wife couldn’t pick me up so she called 9 11 and I wound up at the ER and was admitted….I had sepsis pneumonia and almost died. I was there for two weeks…. When I went in there I was walking with a walker pretty good but my legs were still compromised from the sciatica. For the two weeks I hardly got out of bed to walk and during those two weeks I could barely walk with a walker and was in bad shape. The Lung Doc at the Hospital sent me downstairs to have fluid drained from outside my right lung but they couldn’t do it because they said it had a honeycomb look to it and it was too dangerous to do it……OYE…..Later that day he said the lung looked lousy front and back and just assumed it was from the Lymphoma but to make sure he wanted them not to drain the fluid but to get enough for a biopsy….I refused and refused chemo again and that Lung Doc said I should call in Hospice immediately and have about 5-6 months to live….I was being discharged while still really sick from the pneumonia and was till wheezing….I had two weeks of IV antibiotics. I called in Cornerstone Hospice while still in the Hospital and signed all the papers and that was that….well that wasn’t that was that…That night I went home and Hospice had all their supplies there but I couldn’t walk at all and my wife couldn’t take care of me….My wife was able with the help of hospice to get me into a Rehab center but they didn’t want to take me…..They were mostly for rehabbing injuries and after surgery BUT I had the leg problem so I was admitted for daily PT to get my legs working again….I was there for two freaking months and was discharged January first…this past January….I feel 5 times while there and had hallucinations from the morphine they were giving me. I had hurt my entire chest from all the coughing and was still coughing and wheezing. They sent me home from the Hospital too soon…Another problem was in order to get in to this rehab unit I couldn’t be working with Hospice so I had to leave them…..I was in a room with a guy who screamed all night and left the TV on and it was a nightmare……BUT they helped me get my legs back. I went from 150 when I entered the hospital to 117 a week before I came home from that rehab unit…SO it’s been about 5 months that I’m home. Two months ago I started wheezing and coughing a little so I went to the Doc and got an antibiotic and it knocked it right out. I now have no more wheezing and no breathing problems and feel really good. Have a few new small nodes in my neck that worry me but what the hell can I do….I’m still here and don’t need hospice. I have no pain or any symptoms and I’m walking very good without a walker and driving myself…..I don’t know if this will be of interest to anybody or help but got up this morning and decided to get this out….Hope everybody is doing ok and if you want to ask any questions fire away.
It’s now September and it was four years ago this month that I was diagnosed….I can’t remember the date but it’s four years… I need to update this because in September 3 months away it will be 5 years.