December 2, 2008
Hi All
Well its been 2 years since my transplant and everything is going great!!! Went in for my 2 year at Dana Farber in Boston and they took 20 vials of blood no bone core yay!!! those thing hurt ><. And Dr. Antin told me to stop taking the prograf anti rejection drug and if i dont have any flare -ups of my graft vs host on my skin to stop all my meds in a month whooooo!!! To go from 41 or so pills 2 years ago when i first got out to none in a month is huge!!!! I went back to work sept 1rst doing the 6 days a week grind again now delivering kitchen sets, stools, repairing furniture (without spraying which is harder but i feel inhaling the aerosol sprays in repairing furniture for years may have brought this on tho my Dr. says he doesnt think so) and working in the stores of Chair Fair when needed i’m back to my routine before i got sick yay!!! Suzanne says yay!!! Now we have some extra money to pay off the bills that come with being sick. Man you dont realize how fast your credit cards get filled up when your sick it’s tough on you and your family because you still need things and SSD and SSI tho godsends when your sick don’t pay a lot and you basically exist until you get better. The good news is being back to work is great (oh god did i say that and mean it?) Troy the dog is 2 now he was with me thru my transplant and helped a lot just being there with me he’s sooo cute. I joined a group called One to One at Dana Farber its a volanteer program where if someone who is going thru a transplant, or any type of cancer and treatment can talk to someone who has gone thru what they are going to go thru and you can tell them your story and what to expect and help alleviate some of their fears because cancer sucks lets face it it’s scary to be diagnosed with and treatments for it are tough to go thru to but it’s not the death sentence it used to be. So many people live with it in remission and the new drugs they have can do so much to increase your life with cancer and some things they can do can cure you look at John Lester he’s a great story and me 2 years later back to work off almost all my meds and excited to have my life back Whooooooo!!!!!!! So many people i have met throughout my journey so many awesome patients i have met at Dana Farber so many nurses Dr’s social workers I thank them all from the bottom of my heart for all they have done for me. I’m glad i joined the One to One program just to give back something for all they have done for me. The One to One program is free to join and the people i have met in it are wonderful if you want to join it please call Dana Farber 1-617-632-4020. To everyone out there thankyou for reading my blog it’s been a journey and i am very lucky to still be here the Dr’s at Dana Farber were amazing and everybody that helped with prayers phone calls words of encouragement e-mails you made a big difference to me i am eternally grateful to you all. Now if i can hit the megamillions tonight i’d be set its only 126 million not like you could retire or anything but i’d still take it lololol.
Happy holidays to you all This picture is from this summer ive been lazy in the picture taking department lately. Going back to work is great but i do get tired faster than i did staminas not back the way it was before and strength is getting better i had no strength when i first went back. I’m up to 195 pounds got the 6 pack rolls again lolol i call it winter fat (wink) lololol
Take care see you soon
Scott
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Posted by scorp37
March 23, 2008
Hi everyone
Happy Easter to you all. I can’t wait for spring warm days and summer. Things are going well for me except for the skin GvH flair ups i have every now and then i’m healthy yay!!!!!!!! GvH of the skin in my case is like a red rash and dry skin protopic cream and skin lotion make it go away so thats my treatment for it. Feeling stronger now and i’m a lot less tired than i have been which is awesome. I have been weened off most of my medications only on acyclovar (anti viral med) and Prograf (anti rejection med) and the wonderful nuclear yellow tutti frutti flavored Mepron yum
Mepron prevents a certain type of pneaumonia you can get after transplants. Ive been eating anything i want no buffets tho to many germs but i did get a kelly’s roast beef sandwich yesterday my first roast beef sandwhich in a year that i could get out and it was heaven soooooooo goood!!!!
My physical strength is getting better tho it’s nowhere close to where it was as far as power not that i was a body builder but i could lift a lot more heavier things than i can now and my reflexes are getting better tho i could never be on dancing with the stars unless the dance i do is the “robot” lol
But man am i sooo glad to still be here to enjoy all the good days and bad and so thankful to celebrate the holidays like Easter. My anniversary with Suzannes june 26th 25 years unbelievable how time flies by so were going to foxwoods to celebrate and spending the night i can’t wait to go. My weights almost 190 now i want to keep it 190-200 range i was 240 before transplant and that was to heavy but some of that might be because of my Aplastic Anemia at the time. I look skinnier than i am in this new picture with my dog Troy the evil cocker spaniel
If i can be of help to anyone thats going thru any of the things ive gone thru or are going to go thru please e-mail me Scorpico39@hotmail.com
Wishing you all the best in good times and bad
Scott aka scorp37
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Posted by scorp37
March 17, 2008
Hi all it has been a while scence i posted and today i got some bad news><. When i first went to Dana Farber i was priveledged to meet a couple named Len and Mary. Mary had non hodgkins lymphoma and had had a bone marrow transplant at the time i had not had mine and i was talking to people in the waiting area picking their brains about their experiences trying to get myself ready for mine and listening to their experiences to prepare me for wha i would go thru. Len and Mary were from New Mexico and had come to Dana Farber for treatment and when i met them they had just gotten the o.k. to return home it had been 236 days or around there Mary had grafted slowly but was looking good and feeling good enough to go home. Over time at home Mary had relapsed and had come back to Dana Farber for another mini transplant to save her life Everybody wanted so much for this to work Mary had a strength and courage few possess she went thru so much complications would arise and she would fight them and when it looked bleak she would make what seemed to be the turn around we all wanted she did this over and over during the months after her mini transplant and i remember seeing her after one of her bouts where things didnt look good at dana farber looking great laughing and joking and just being Mary a wonderful lady i wish you all had got to meet. Mary lost her battle this week and i got the call from Lenny tonight it is with a very sad heart i write this tonight.Lenny and Mary were married and together 35 years scence college days and i can only imagine the hole her loss has made in his life to lose your best friend and lifelong soulmate at a to young 53 years of age has got to be so tough. Lenny took care of Mary during her fight to live like we would all want to be taken care of if we ever got sick his strength during tough times is a testimate to his love for mary. I am so glad to have met them and am proud to call them my friends and i will miss Mary but she will live on in the memorys of those who knew her and loved her and called her friend she was the toughest woman i have ever met.
scott
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Posted by scorp37
December 19, 2007
Hello everyone
Happy holidays i celebrated my first year November 30th and i had my first beer in 2 years. It was ice cold and tasted great
I hope you all have a wonderful christmas and new year. I’m glad be here to enjoy it. I have a friend i met at Dana Farber her name is donna i posted earlier in this blog about her. She is a great person and friend and mom but she is in the hospital with some complications and may not be home for the holidays Please say a prayer for her to help her thru this difficult time. I don’t think any of us would want to be in the hospital for the holidays ><. Well here is the pic of me with my first beer and i wish the best to everyone take care and see you in the new year
Scott
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Posted by scorp37
December 3, 2007
Hi all
I got a great link from a man named Stephen who gave stem cells as a donor his website on what he went thru as a donor is here http://stephencwalker.wordpress.com/2007/11/20/how-to-save-a-life-the-story-of-my-bone-marrow-donation/#comment-17
Thanks Stephen for giving someone a new gift of life and for the great e-mail i wish you the best and the best to the recipient of your stem cells
Scott
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Posted by scorp37
November 28, 2007
Hello everyone
Today is the big day 1 year!! I go into Dana Farber today to get my 6 shots and a bone marrow biopsy >< no fun there but hey who am i to complain?? Hope you all had a great thanksgiving i know for any survivers of cancer or other deadly diseases we appreciate the little things like walks on great days and crappy ones to your wife, husband, partner,children, and family that have helped you thru these tough times. The Dr’s all over the world that have saved countless lives with their expertise,The family of the little girl that donated her umbilicol chord that saved my life, and the friends we have or have met because of what we had or have that boosted us when we needed a boost. My taste is still a little off at 1 year most of it has returned and i do get little flare ups of the graftvs.host on my skin and sometimes i still feel tired but on the whole i am healthy and thats a beautiful thing. Yay!! no more mask and gloves!! Unless i go to Foxwoods Mohegan Sun or Twin Rivers in R.I. then i’ll wear gloves and have a mask in my pocket just in case someone with a cold sits next to me my friend nicole gave me the mask idea thanks nicole
Thankyou all who read this blog soon that dreaded four letter word “work” will be a part of my life again oh joy lol.
I wish everyone all the best and will post again soon xmas time until then take great care of yourselves.
Scott
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Posted by scorp37
August 20, 2007
Hi Hi all
Well it’s 8 months 3 weeks and so far so good I go into dana farber wed. and they are talking about reducing some meds i’m on yay!!!! I have a friend Donna i met at Dana Farber who has lymphoma and had to undergo a transplant with umbilicol chord stemcells like me. She did not have the same protocol as i did and her transplant is going very slow she has been in the hospital 40 days and is getting down any prayers and good thoughts you want to send to her would be great she is such a great person and super mom to her 3 kids. This makes me realize how fortunate and lucky i am to have gotten better so quick and how my recovery has gone well everyone is different and some take a long time to graft i wish i could reach out and fix her you know what i mean? Heres a pic of me and my dog Troy he’s great company during the days. Hope you all are great and i wish you the best. Check out the hair!! it’s gone wild all curly lol i can’t tame it lol
Scott
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Posted by scorp37