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Survivorship Means Victory: Evelyn’s Survival Story

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Survivorship means Victory; victory over death, pain, fear and anxiety. My life changed dramatically in May 2007 when I was diagnosed with AITL (Angioimmumoblastic T-Cell Lymphoma) which is an aggressive and recurrent type of cancer. After numerous regimens of different chemotherapy cocktails, which did not put me in remission, I had an allogeneic transplant in April 2008.,

During this arduous journey there were many highs and lows. Often, I felt like I was on a roller coaster ride with no end. Now I am approximately eight years post-transplant and I can reflect clearly on this adventure.

Evelyn during treatment

Evelyn During treatment

Surprisingly, I discovered numerous positives along this path; positives like having greater compassion for people wrestling with awful diseases and a desire to encourage these victims. Also, I learned to forgive people who didn’t understand the struggle I was facing. Prioritizing my time, energy, activities, and emotional well-being became primary for me. Small troubles were allowed to slip out of focus. Following explicit directions from my medical team and caregiver also became a priority. It was important to surround myself with positive, caring people; and, I learned to ask for help without being embarrassed. Some relationships, such as the one I have with my husband, were strengthened while others fell away.

Other positives include having a greater trust in God, my husband, who was my caregiver, and in the medical personnel who attended me. I learned to read my body signals and am comfortable with expressing my medical needs and concerns. Also, I understand the value of good nutrition and exercise. Now I have a strong sense of purpose and believe I was spared so I can help others along this same road. I recognize myself as a strong and courageous woman who can face extreme difficulties with grace.

The nbmtLINK has been a great source of information for me. I have watched several of the webcasts and participated in ongoing phone conversations about cGVHD with experts in the field. I also read the Living Now newsletters from cover to cover as soon as they appear in the mailbox. In addition, I have watched the New Normal video to learn as much as I could about my disease.

In conclusion, I am truly thankful to be a survivor and am grateful to each person who supported me along the way.

Evelyn on her motorcycle

Meet BMT Recipient Bill Meade: Making a Difference by Supporting His Peers

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Bill Meade

Bill Meade

I clearly remember lying in bed at Oregon Health and Science University Hospital (OHSU) in Portland in the fall of 2009. I had been diagnosed with acute lymphoblastic leukemia weeks earlier.

The doctor just pronounced to my wife and I, “Well, we’ve got you in total remission, now we’ll work on your transplant. It’s a full non-related bone marrow transplant, using stem cells.” He left the room and I looked at my wife and said “What the heck does that mean”?

My name is Bill Meade. I was 59 at that time and was still in somewhat of a shock that “super healthy me” had cancer. The doctors at OHSU were wonderful, gifted people but only had a limited time with each patient. I so wished that I could have spoken with someone who had actually been through all that was ahead of me.

I was unaware, at that time, such groups as the nbmtLINK existed but I vowed that when I got through this I was going to look into that possibility, and help if I could.

I am connected with three cancer organizations now, including the nbmtLINK, as well as my local hospital. I have supported twelve patients in the United States and Canada in the last four years through these groups, talking on the phone and through e-mail.

They all do a great job connecting me with patients who have a similar diagnosis and treatment options. It varies at what stage, if at all, a patient wants to speak with someone who has been through the entire process. Some patients were just diagnosed, some are still waiting for a match.

It’s a gut punch when you are diagnosed. Often, many do not wish to discuss the treatment and future with someone who has been there. However, some do. I have spoken to many and heard a lot of stories. It’s amazing how similar our thoughts, fears and concerns are.

I am fortunate to be here, in Central Oregon, enjoying each and every day with my bride of 47 years and my Goldendoodle of five years. I’m more than willing to discuss my experience.

Note: The nbmtLINK has a free Peer Support On Call program available. This program offers emotional support from trained volunteers who are bone marrow/stem cell transplant survivors, caregivers and donors.

Matt Carpinelli’s Touching Story: How the nbmtLINK Helped his Father

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Matt and family

Matt Carpinelli and family

The night of December 17, 2001, changed my life forever. That was the night that my 54 year-old father, Dave Carpinelli, was diagnosed with AML. I still can’t bring myself to write out the scary thing that stands for, so I use the acronym. My strong daddy, the guy I never saw scared, was white as a sheet. He knew what this meant even though my mom and I had no idea. He was the kind of guy that wanted to know what he was up against, so he knew the bad news of his diagnosis before it was confirmed.

We learned that there is a 5% five-year survival rate for men over 50 diagnosed with AML. It was a bad diagnosis, with only one chance at living for more than a few months. That one chance was a bone marrow transplant. We all thought that leukemia was something that kids got, not adults, and BMT’s were something for younger people.

There were a lot of misconceptions and uncertainty those first few months after diagnosis. What would the transplant be like? Would it kill him? What if he didn’t have the BMT? If it worked, what would life be like? To our surprise, these weren’t questions that our oncologists and doctors could really answer.

Matt's father

Dave Carpinelli

That’s when my dad found the nbmtLINK. The LINK gave him comfort and helped dissipate his fear of the unknown. My dad made friends from the LINK, people that told him the truth about what to expect with his transplant. More than anything, Dave Carpinelli was a straight shooter, and someone that really didn’t like B.S.

The people and resources of the LINK gave it to him straight. They weren’t fun things to look forward to but at least he knew what to expect—less fear of the unknown.

I am forever grateful for the relief that the nbmtLink gave my father in the final months of his all too short life. He was optimistic about what his life could be if he survived. He learned from the LINK that his life would be different but still good after the transplant.
Thank you to everyone who gave my sweet father that comfort while preparing for his final journey.

Amanda Schamper: Giving Back and Going Strong

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Amanda Schamper

I was 30 years old and seven weeks pregnant with my third child when I was first diagnosed with leukemia. I had no symptoms other than being slightly tired, but who isn’t a little tired with a five and three year old running around? The doctor had discovered my leukemia from the initial lab work that was done at my first O.B. doctor’s appointment. It was a miracle that it was discovered in the early stage. Because of the kind of leukemia I had, there is an oral medication that can be taken which has a 98% remission rate. Unfortunately, I couldn’t start this treatment because of the high risk of birth defects.

Instead, I gave myself daily injectable chemotherapy for four months until I was told that it had stopped working. I was getting anemic and the leukemia was spiraling out of control. My doctors had done research into the preferred medication and felt it was safe enough for me to start taking it, now that I was in my second trimester. As you can imagine, this was a difficult decision to start this treatment as I didn’t even like taking Tylenol while pregnant. My husband and I felt I wasn’t helping my son by not taking care of myself and the leukemia. He was born full-term and perfectly healthy. I like to call him my little miracle because without him, I wouldn’t have known I was very sick until it was possibly too late. He is in the first grade now and quite the friendly personality.

We had thought everything was going to be ok but four weeks after he was born the leukemia had changed forms and turned into a blast crisis. I was then told I needed a bone marrow transplant to save my life. I was devastated. What was supposed to be the happiest time of my life turned into my worst nightmare.

The doctors said that if and when I had the bone marrow transplant, I’d have to spend 100 days away from my family, friends, pets and home while I recovered, since I lived so far from the hospital. But first they needed to find me a bone marrow donor match. They tested my sister, with a simple cheek swab, to see if she was a match for me and we were disappointed to learn that she was not. I was told that only 30% of patients who need a bone marrow transplant will find a match within their family and the other 70%, like myself, must turn to the National Bone Marrow Registry to try to find a life-saving match.
I was one of the lucky ones. They found a match for me within two months. Once they got my leukemia under control, I successfully had my bone marrow transplant when my son was just six months old.

In October of 2015, I celebrated my six-year transplant anniversary, which is a huge milestone in the cancer survivorship world. I also had the incredible opportunity to meet my bone marrow donor during Delete Blood Cancer’s annual Gala in NY, four years ago. He’s a man from California, just a year younger than I am, and his reason for donating was simple. He is very close to his mother and when he learned that I was also mother of three, he knew that he had to help because he couldn’t imagine growing up without having his own mother.
It was an amazing experience to finally thank the man who saved my life. In all honesty, I wouldn’t be here today if it wasn’t for his willingness to donate. He is truly my hero and I’ll be forever grateful for not only what he has done for me, but for my entire family as well.
I now work for Delete Blood Cancer DKMS, the non-profit organization that helped save my life. I help to raise awareness and increase the national/global bone marrow registry so that other patients can have the same opportunity as I did, to have a second chance at life.

Leukemia Survivor and her Son

Our new website is up and running and I have a question for you.

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It’s time to get our blog going. We are rounding up posts and inviting patients, caregivers and health care providers to share, share and share some more. We learn from each other and therefore we can help each other. Will you consider joining us? If you would like to be a guest blogger, please contact Peggy Burkhard at (248) 770-5172 cell or (248) 358-1886, or email, peggyburkhard@nbmtlink.org.

We surely look forward to hearing from you soon!

I ask you this—what do you know now that you would love to share, as a patient, caregiver or health care professional, with someone newly diagnosed and about to start the bone marrow transplant journey? I look forward to hearing from you.  – Peggy Burkhard, Executive Director, nbmtLINK