Bone Marrow Transplant Survivors Blog

Bone marrow Symposium in Burlington Mass

scorp37 — Thu, 25 Feb 2010 02:39:24 +0000

Hi All

Here is info on the burlington mass. symposium

Celebrating a Second Chance at Life Survivorship Symposium
March 20-21, 2010
Burlington, MA
(just north of Boston)

This unique symposium, specially designed for bone marrow, stem cell and cord blood transplant survivors and their families, will offer a wealth of information and inspiration to all who attend.

Presentations by nationally recognized experts will include:

• Stem cell transplants: A look into the future
• Managing chronic fatigue
• Riding the emotional roller coaster of survival
• Navigating the medical system: How to protect your health long-term
• Coping with “chemobrain” (memory and learning problems)
• Complementary medicine
• Employment rights and disability insurance options
• Female sexuality after transplant
• Male sexuality after transplant
• Chronic graft-versus-host disease
• Caregiver challenges
• Spirituality: Coping with changes from transplant
• Family planning after transplant
• Navigating the insurance maze
• Financial management post-transplant
• Ask the experts panel

There will be special sessions for parents of pediatric survivors and for young adults, and plenty of time to network with others and share strategies for living life to the fullest after transplant.

For more details about the symposium can including a detailed agenda, registration form, discounted lodging information and travel details visitwww.bmtinfonet.org/Boston2010 or phone (888) 597-7674.

A modest registration fee covers the cost of symposium materials, dinner on Saturday night, Sunday morning breakfast and snacks on both days. The fee can be waived for those who cannot afford it, simply by requesting a scholarship.

We hope you can join us for this special event. The wealth of knowledge that is shared at the symposium, and the new friendships formed with others who have “walked in your shoes” are sure to inspire and inform you!

If you have questions you can phone BMT InfoNet at 888-597-7674. We look forward to seeing you in Boston!

This is a great opportunity to meet other people that have gone thru what we have and it sounds like they cover a vast amount of subjects i know sometimes i feel like i still have chemo brain like when i’m talking and forget what i was talking about ><. And Don’t say thats a sign of old age (cry) lolol The information supplied at this symposium is invaluable to us all and to our ongoing life after transplant i hope you all will come to it i plan on being there saturday for sure and would love to meet others who have been thru all of this and are still here to tak about their experiences. They say there is a fee to go to this to cover a dinner on sat night and cover some costs .

Here is the link that explains it all

http://www.bmtinfonet.org/Boston2010/index.html

Peace love and happiness to you all

Scott

Bone Marrow sympsium in burlington update

scorp37 — Wed, 20 Jan 2010 20:14:51 +0000

Hi all

Today i got a comment on my page and it made me realize how neglected ive let my page be. So heres an update todaay is 3 years 2 months since my transplant whooo

I’m back to work full time mostly 6 days a week and my strentgh is better but i still get achey i think it’s the cold weather i feel it in my bones alot but hey who am i to complain The comment that i got from kevin and jean walsh is to spread the word about a symposium coming to Burlington, MA in March of this year (2010) for bone marrow survivors. I heard about this also from my bone marrows survivors group at Dana Farber i belong to and i will pass on more information when i get it. I guess last time it was held it was held in houston and they got over 300 bone marrow transplant survivors to come so hopefully this will top that. A man i met at group Wil Traub told me that the transplant group felt like a fraternity and that fits this perfectly from transplant survivors to our donors to our caregivers family husbands wifes we are a big fraternity and with more people surviving transplants now a ever growing one. We are lucky to be here some with more complications then others and trying our best to live a normal life after transplant or as they say “the new normal” . This is a great chance to meet people just like you who have gone thru the chemo radiation transplant ect.. and hear their storys and share yours to hear experiances that may mirror yours or to hear others have the same challenges and things happen to them that you thought were only you. The great thing about the group at farber is we can talk to each other people will say i get these cramps and others will say i get those to and this helped and you realize it’s not just you going thru it it’s part of the process and relieves some worrys you had thats happpened a few times where you can relate and that helps alot. Although going thru transplant is no fun i have met so many people from all walks of life some still with us some we have lost and i am proud to be in this “fraternity” of fellow survivors still here loving the sun the grass the flowers birds dogs cats my wife and family and cherishing the friendship i have from meeting everyone i have thru this journey it has changed me for the better in so many ways.

My best to you and your familys

Scott

2 Years wow

scorp37 — Tue, 02 Dec 2008 21:06:46 +0000

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

I lost my best friend today

scorp37 — Tue, 14 Oct 2008 17:47:45 +0000

Hi all

I know it’s been a while since i posted anything and it is with the saddest heart i write today. My best friend Steve Smith from Virginia lost a valient fight against cancer. It isnt very often in life you find a “true” friend we all have friends but if were lucky we find “true” friend and i was lucky to have Steve. Steve drove truck and i met him long ago at work he delivered for Stoneville furniture and from that day on he was known as Steve from Stoneille. Throughout my battle with aplastic anemia Steve called me every day to cheer me up with a bad joke or talk about his day but he always started the conversation with how are you doing today. Before i went in for my transplant he took a trip up to mass. just to see me and after i got out and could be around people he came up again this picture is from that time after transplant it’s a memorie i will treasure forever. Steve was diagnosed with cancer 3 months ago if that long and was told worse case scenario 6 months to live it took him in 3 months and i thought i had time with him time to send him things like the mullet wig i bought for him because he lost his hair and the card and cd’s i made for him of funny things collected over the years to pick him up and make him laugh. I regret not sending things sooner to him but like everyone i didnt see this coming so soon and it hurts it hurts so bad. To think i will never hear his voice again never play the video games we played together forever Final Fantasy the game he got me hooked on never to see dirtydog again on the game hanging out doing things together we knew would get us killed but did it anyway because it was fun to party together. A truer friend i will never have and the hurt i have today is like the hurt when a family member passes away because Steve was family to me he was more than a friend i considered him a brother. As i sit here crying as i write this thinking of the lifetime of memories i have because of him it makes me even sadder that i won’t have any more great times with my brother and best friend and how much i will miss him. Life can be cruel sometimes and this is one of those times Steve turned 46 this past saturday to young to have life cut short. Steve will live on in my heart and soul i will treasure the great memories i have and the influence he had on my life. Steve i want you to know i will miss you my brother you were the best friend anyone could ask for and i will miss you sooooooooo much so much and i hurt inside so much rest in peace my friend and brother.

Love Scott

Happy Easter!!!!

scorp37 — Sun, 23 Mar 2008 17:02:58 +0000

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

In memory of Mary

scorp37 — Mon, 17 Mar 2008 02:51:31 +0000

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

scorp37 — Wed, 19 Dec 2007 22:26:10 +0000

Happy Holidays to you all

scorp37 — Wed, 19 Dec 2007 22:25:44 +0000

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

A new link

scorp37 — Mon, 03 Dec 2007 23:26:17 +0000

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

YEEHAH!! 1 Year Today!!!

scorp37 — Wed, 28 Nov 2007 13:01:32 +0000

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