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  • Believe in Yourself, and You’ll Come Through with Flying Colors! - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    transplant after many tests were run I really didn t like those numbers and was determined to outdo them I had too much to live for I knew it would take a great deal of will and fortitude to get through the upcoming days and I was going to try to keep everything as close to normal as possible Prior to the transplant I was treated with high dose chemotherapy and total body irradiation Everyday after the transplant I made it a point to try and eat a little something walk 1 2 miles in the halls and make sure that all the directions from the medical staff were followed to a T As I was at a research facility I volunteered to be a participant in many research studies in the hopes that future patients would benefit from the results I know that new therapies and treatments are now available for some of the complications and setbacks that many of us old timers had to endure because of these studies I spent 4 months in Seattle and was allowed to go home 100 days post transplant just in time for my daughter s 2nd birthday What a great birthday present I was so happy to be back with my family again I had some setbacks with chronic Graft Versus Host Disease and shingles those following months and they were difficult ones for me After a period of recuperation things resolved themselves and I was truly on the mend As of this writing I am 24 years post transplant disease and medication free and in very good health I m so thankful for having been given a second chance at life and don t take anything for granted especially my health I m currently working full time doing volunteer work

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_believe_in_yourself.htm (2015-03-27)
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  • Time is a Friend - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    solid bowel movement With each small victory in my son s journey with cancer and a transplant I can t help but remember the losses including his childhood innocence and my parental naiveté Intense medical care has occupied so much of Cody s and my life over the last three years that it seems immensely abnormal not to be taking Cody s temperature or administering numerous medications throughout the day I have to remind myself over and over we indeed are on the other side of the transplant About a month ago Cody got an ear infection I called our pediatric oncology nurse She advised me to take Cody to his regular pediatrician He hasn t seen a regular pediatrician in over three years I told her She said this would be a good opportunity to learn what most parents handle medically with their children It was an immense pleasure administering those eardrops I felt like Cody had just joined the normal kids club At dinner one summer night I noticed two fairly substantial scars on Cody s chest one from the port from his leukemia days the other from the double lumen Hickman from the transplant I couldn t help but wonder what kinds of conversations these scars would generate as he got older and other kids or friends saw them and asked about them How would Cody answer How would he take people s reaction to what he said and integrate that into his cancer transplant story How would he frame his experience Of course I wished he hadn t any scars on his chest And of course I wish I didn t have any on my heart either But we both do and the fact that we have these scars probably is not as important as how

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_time_is_a_friend.htm (2015-03-27)
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  • You Will Feel the Rain on Your Face Again - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    resist it this entire experience has become the defining event in my life Why do we try with such furious effort to live through cancer to get well Because of life I guess because of love because life is so full of magic and the world is still such a magnificent place Happiness seems like a quality forever at our fingertips yet we often take it for granted and find ourselves without it How do we make the most of it while the lights are on What can you count on in a slippery and uncertain world During a stem cell transplant there s a lot to be said for just hangin in there Three cheers for mindless persistence The biggest lessons I came away with are first Don t waste a minute or a word Do what you need to do and want to do Love who you need and want to love and let them know you love them again and again Separation between us is an illusion The reality is that while we often seem like strangers we re bound by love and mortality dependent upon one another and always significant in our anonymity Find purpose in your work Even in our darkest moments we hope Some of you may currently be in the midst of your darkest moment it s now your job to find hope Somehow find hope Keep the faith I for one am about to exhale Excerpts from Between The Ground God Lyrics Essays Interviews 1990 2005 by Stewart Francke Ridgeway Press 2005 Back to Voices Main page Acknowledgements Never Look Back Traits of a Warrior A Donor for What Those Amazing Stem Cells Got a Joke I Had Leukemia Okay I Smile The Gift of Life One Year Out Believe in Yourself

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_you_will_feel_the_rain.htm (2015-03-27)
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  • Inspirational Guidelines - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    is over we re going to Disney World But my most important goal was to walk my daughter to school on her first day of kindergarten I kept that picture in my mind My transplant was in March so I had six months to prepare for it We have not been to Disney World yet but I did walk Sara to school that September I have been walking both of our children to school ever since Speaking with survivors gave me so much hope They were the only ones who knew and understood what I was going through A peer support volunteer was especially helpful His words and experiences which he shared with me were encouraging He was four years ahead of me in the process and I remember him telling me about his family being in Florida for a vacation after he recovered He actually went jogging on the beach At the time I was so weak and sometimes had to use a wheelchair while I was in the hospital I could not even imagine myself being strong enough to walk on a beach A few years later I sent him a postcard from Florida I was there with my husband for a long weekend I am not a jogger but I did take a walk on the beach It felt so good I also remember telling a survivor who lived in North Carolina I can t wait until I am on your side of the fence Well four years later I was another goal I achieved Becoming a Peer Support volunteer for the National Bone Marrow Transplant Link is very rewarding I know that I am helping newly diagnosed patients as well as giving back for those who encouraged me along the way Back to Voices Main page

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_inspirational_guidelines.htm (2015-03-27)
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  • Achieving Serenity Through My Own Hands - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    souls The result for me has been a willingness to take creative risks that I would not have chanced before I have an eye for certain shapes and delicacies that I was unable to see before My pieces have become more sculptural and technically more refined The work itself is analogous to life in that the fragility and fleeting qualities of life have become part of my art Each piece has more significance than before Each step of the process carries its own charge of happiness and contentment There are no more jobs just more opportunities I notice that time stops passing when I m deep in thought about a pot I go into a mild and consistent meditation when I work Though I was trained with master potters to produce many duplicate pieces as sets I have found myself working on more individual forms lately Each piece has its own unique qualities and deserves as much time as necessary to become the special shape with the particular message it conveys Since I have developed peripheral neuropathies in my hands and arms there are times when I cannot feel the clay This was very disturbing at first How am I going to be able to work with my medium if I can t feel the roughness smoothness or whether it is cold or hot Well I discovered that I can close my eyes when I m working on a piece and the sensations increase In fact I get results that are closer to what I imagine in my mind when I do not look at the clay than I do when I see the surface My fingers see the clay and feel the texture and temperature when my eyes are closed Amazing None of this development was true before I

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_achieving_serenity.htm (2015-03-27)
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  • Frequently Asked Questions - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    fun A Went for walks around the ward modeled my facemask rode my exercise bike listened to music read the New York Times read poetry a little checked messages chatted with the nurses and doctors watched hockey watched the helicopters coming in studied the comet Q How did you spend most of your time A Sleeping Q What were your favorite experiences A Being with Lynette being visited by my daughters Amy and Rebecca hanging out with friends and eating ice cream when I could manage it Q Any vivid memories A The transplant party the color of the marrow coming into me my hair in a clump on the shower floor Q Would you do it again A Yes I would Q Did you find the transplant a transforming experience A Yes Q How do you experience the long term effects A Being alive amazement at being alive enjoying life appreciation for the small things in life living a productive life Q Any negative effects A Fatigue forgetfulness chronic sorrow general bewilderment fear of death indifference to death confusion about death Q Would you recommend this procedure to others A That depends Q But you have no regrets yourself A Not really Q So you would do it again A Yes Frequently Asked Questions from Transplant by Macklin Smith Shaman Drum Books 2002 Back to Voices Main page Acknowledgements Never Look Back Traits of a Warrior A Donor for What Those Amazing Stem Cells Got a Joke I Had Leukemia Okay I Smile The Gift of Life One Year Out Believe in Yourself and You ll Come Through with Flying Colors Time is a Friend You Will Feel the Rain on Your Face Again Inspirational Guidelines Achieving Serenity Through My Own Hands Frequently Asked Questions A Lesson in Humility

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_frequently_asked_questions.htm (2015-03-27)
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  • A Lesson in Humility - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    the diverse faith experiences this journey can bring for people I will share however that my mother s journey inspired me to find faith in a rather surprising place the body itself the very vessel that betrayed us by developing cancer in the first place In the week following her transplant I stood helplessly by and watched my mother s temperature and heart rate soar as her lungs filled with fluid She was in congestive heart failure There were some incredibly dark days of watching the woman I loved so very dearly struggle through pain incredible discomfort confusion and fear She lay in her cyborg cocoon of EKG leads IV lines and O2 mask too tangled in life giving machinery to always make it to the bedside commode I wished with all my being that I could relieve her of those burdens could make it more bearable for her could somehow make any of it go away It was several days later when her lungs were clear of fluid her heart responding to medication her brand new white blood cells beginning to heal the sores in her GI tract that my mother told me she had no memory of the EKG leads or the portable commode at all Those dreadfully dark days were for her just dark All the pain discomfort confusion and fear I so desperately wished I could make go away were for her effectively gone My mother may not remember those days but I do vividly And yet the ultimate effect for both of us has been the same we are less afraid of dying less afraid of extreme pain or suffering more believing that the body protects us from that which we cannot endure What a beautiful gift of faith to receive Like many survivors my

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_a_lesson_in_humility.htm (2015-03-27)
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  • We All Need Hope - Voices of Hope & Healing - Resources and Support - National Bone Marrow Transplant Link
    be determined because there is so much for us to see to do and to contribute that we must squeeze as much as possible into our daily lives We must live everyday to the max Throughout our journey we must step back and count our blessings We are more fortunate than maybe we realize Over time we may have taken things for granted We have so much to be thankful for our families our friends our gardens sunny days home a great country to live in and the list goes on Really think about your surroundings and you will be amazed at how much you have Appreciating what I have was one of the biggest positives that came out of my cancer As a result of the whole cancer experience my focus has changed What is important now tends to be more personal things such as family The focus has shifted away from career and work Small things are much more appreciated When we have appreciation for everything from the simple fact that we are alive to all the little things in our lives we build our hope beyond our immediate cancer concern In fact if we step back we should realize that adversity even cancer is a gift It teaches us to be better human beings We appreciate everything we have starting with the opportunity to open our eyes each day Cancer refocuses our attention to what is important Hope provides an opportunity to travel a whole new road in life after hitting a bump of challenging times Life takes on new meaning from the hope that is out there Hope is a powerful driver on a trip through adversity Excerpt from The Ride of Your Life Fighting Cancer with Attitude Ricco John M Ferne Press 2008 Back to

    Original URL path: http://www.nbmtlink.org/resources_support/voices/vhh_we_all_need_hope.htm (2015-03-27)
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