was successfully added to your cart.

Meet Jackie: We All Need Someone on This Cancer Journey and We Are Not Meant to Go It Alone

By | Uncategorized | No Comments

I wanted to know someone who had been there – a person who had come out on the other side, ahead of me, to walk with me, should I ever need that guiding light. My only regret is that I never asked for this type of support. I only wanted to feel a little more at ease, if there is such a thing at times like these.

My name is Jackie and I live in GA. I am an eight-year cancer survivor. Two summers ago, I had my second stem cell transplant, and thanks be to God, I am doing very well today. The highlight of my year will be to celebrate two years of remission this December!

My story is long and at times difficult to imagine, but just like so many others, it is a tale of triumph over this awful disease called cancer. We all prevail in the way that we battle – no matter the outcome. This perspective has strengthened my resolve and given me hope many days when despair was so close it was palpable.

Diagnosed with Stage IV Anaplastic Large Cell Lymphoma (situated in my lungs) took me by surprise at the age of 29, the summer prior to a planned trip to Puerto Rico. But believe me, vacation was the last thing on my mind when I learned what my summer was really going to be about: six rounds of chemotherapy, each over 5-6 continuous days. This meant a 24-hour IV drip of medication attached to me, to attack the cancer. It worked. By the end of the summer, I had been allowed to take my birthday trip, after all, and in the fall I returned to work, in complete remission – cured from lymphoma! Or, so I thought.

As it turns out, I would successfully battle this disease three more times. And as I type this sentence, I have to take a moment, pause and breathe. It is still hard to imagine. I have faced and defeated cancer four times. Of course, I wasn’t alone. Actually, I didn’t do it. I believe in a higher power, the power of prayer, and miracles. How could I not?! Yes, cancer came for me. Yes, cancer is gone from me. Yes, I think about it every day. But what I focus on is the fact that I am still here, and the gratitude that comes with that reality emanates from my spirit.

My family and I learned to focus on and support one another through my journey with cancer. Already close, we’ve known how to be there for each other, but when you experience life enough, you find that such relationships grow exponentially! Also, I was employed as a school counselor when I was initially diagnosed and very lucky to be able to do what I love … working with children. Unfortunately, I had to stop working in order to protect my growing immune system, and haven’t been back to work in over two years. But I have adjusted and I can see that this is all part of the path I must walk.  I’m so thankful that I do not have to walk it alone.

We are not alone. Yes, having cancer can be a lonely and isolating experience, but we are not alone. And this is the reason why I believe I had such a desire to meet someone early on who had already been there, walked the path and ‘gone through the fire,’ so to speak. An individual to share with me their triumphs, setbacks, and secrets – in other words, their story – so I could feel inspired by them. But I am very slowly learning along the way that I am my own inspiration. It’s true, and each one must find her own way to be inspired. Embrace your strength, your influence, and your own unadulterated resolve to overcome whatever your personal challenge may be. Whether it is cancer in your own body or the illness or death of a loved one. It could be other life circumstances that weigh you down. Use what you have surpassed to fuel you along life’s journey. And as you learn to draw upon your own inspiration and experiences, you just might reach and inspire others.

You’ll never hear me say that I am glad that I had cancer. But neither will you hear me wish for a different life.  I believe that this path was designed for me and I will walk it until the day I leave this earth. You’ll never see me hold on to pity and sadness for long. But some have seen me wallow in it for a moment –just long enough to release the tension – then look up and find my bearings again. And they might hear me say that this is the loneliest I have ever felt, but I am surrounded – by family, friends, nurses, doctors, prayer warriors and more, so many more. What I wish you would take from my message is that we all need someone. We are not meant to make our journey alone. And once you embrace that and find your own shoulder to lean on, then I challenge you to turn and face cancer square on and no matter what this illness robs from you, you decide what it will never steal.

We all have things that are non-negotiable. For me, my non-negotiable is my spirit, my beautiful soul … cancer cannot have (or ever take) that.  What’s yours?

Thankful and Thriving — Yes, you can do it!

By | Uncategorized | No Comments

On June 30, 2015, I was in room 8246 at the University of Washington Medical Center in Seattle receiving a stem cell/bone marrow transplant from my brother, Rob.

When my husband, Glen, and I first learned of my need for a transplant, I remember finding the quote, “Not to spoil the ending for you, but everything is going to be OK.” We had no idea how rough the road ahead would be – and there were some rugged moments to be sure – but we always had confidence that, in the end, everything would, indeed, be “OK.” And here we are, little more than one year later, and everything is all right. We are so grateful. We are especially thankful for our doctors, Virginia Broudy and Bart Scott, who encouraged us when I didn’t want to even consider a transplant. We especially appreciate the amazing care I received from everyone at the Seattle Cancer Care Alliance and UW Medical Center. Perhaps most of all, we will be forever grateful for my brother Rob’s gift of stem cells and the incredible support and strength that our family and friends provided every step of the way.

I have learned that each transplant journey is unique. Before my transplant, I wanted to know exactly what it would be like; how sick would I feel, would I be “myself” again? I spent many hours reading stories and blogs of other transplant patients. I appreciated reading all the details of their diagnoses, how they prepared for a transplant, their suggestions for what to bring to the hospital, what the high-intensity chemo was like, the recovery process, the complications and so much more. Some of the blogs ended abruptly; and then, a later post would tell of their passing. Other blogs shared successful early outcomes, but often, I wondered how those individuals were doing later.

So for those who might be reading this blog because you are facing a transplant, know that you can do it. I am well and going strong. There are many encouraging stories out there and many happy endings. I am blessed to be a stem cell transplant survivor with a positive outcome and a hopeful future ahead.

Cathy shares her story through her blog post. For more visit, http://marrowadventure.tumblr.com/post/146741635105/one-year-ago

cathy-morris-in-hospital

cathy-today

Meet Faith: Making a Donor Difference in All That She Does!

By | Uncategorized | No Comments

In 2010, a Fedex urgent letter arrived at my door. It was the evening of our oldest daughter’s college graduation and my house was already bustling with excitement. Early in the evening, I called the number in the letter. I didn’t think I would reach anyone late in the day, but I did. She was a wonderful, compassionate woman and understood my over-the-top joy at learning I was a match. She told me the transplant was for a three-year-old boy with leukemia. I had been the owner of a day-care venture for over 20 years at this point. I had had three-year-olds in my care running through my home everyday. This child’s situation really hit me even more.  Immediately, I said “Yes”.

The next one to two weeks were consumed with paperwork, three to four visits to the lab, a psychological interview and a medical check-up. All of these were completed and I was ready to go in just 40 days from when the letter came.

I have to admit when the car service came to pick up my husband and me to take us to New York City the night before the procedure, I was nervous. Not in a bad way – I just couldn’t stop thinking about that little boy and his family.  I know how patients and their families have to be prepared before receiving a transplant; and, with all my heart, I didn’t want this family to worry.  I wanted them to know that I’m here and we’re all on our way.

The next morning I was scheduled to be in the operating room by 7:30 a.m. Something else I was feeling was almost like tunnel vision. While waiting to go into pre-op, we were in the holding area with many other patients; some were chatting and reading magazines. I just held tight and waited to be called. I didn’t want to relax; I didn’t want to take my thoughts away from what was happening. Then I saw the man with the hand-held cooler, he was at the nurses’ station. He and the nurse looked at me. He knew that I understood why he was there. That was a very surreal moment for me – the first of many.

The surgery went perfectly. They took what they needed from my right hip.  In recovery, I felt like “a million bucks.” The staff was remarkable in every way. The next three days I took it easy around the house with only the slightest discomfort. The feeling you get in your heart overrides the pain – I promise.
I thought about the child and his family almost every day, always wondering how he was doing. Then in early fall I received a call that a second transplant was requested. Sometimes this happens and every case is different.  This time they went with a stem cell transplant, a little different from the first time. I had blood work done again and we were ready in less than two weeks. Another trip to New York City and we were ready.  To be a donor once is incredible, but to be a donor twice, unimaginable. I just wanted so much for this family to know that I’m here for them and am ready again. The morning of the procedure we stopped in at St. Patrick’s Cathedral, a massive, beautiful church just a few blocks from the hospital. I wanted to light a candle for this child and his family. Another surreal moment, just walking in there and being there on that morning, I knew He was watching over us and would make everything all right.

The transplant went as smoothly as it was supposed to. We sat and watched TV and chatted with the nurses. Six hours later I was on my way back home and resumed a normal life the very next day. This time I didn’t see the “man with the cooler”, I always wondered if my recipient was close by, and would get my cells soon after. It all really is quite the miracle!

Being a donor has changed me in so many ways that I’ll never fully grasp. To be someone’s “one-in-a-million” chance at life has to touch your heart, it has to make a difference in everything you do from that point forward. It did that for me.

It is nearly spring now, and I know the one-year anniversary is coming up. I was waiting patiently for an update. Then DKMS called me. I returned the call right away and in those few seconds it took to get them on the phone I went through a thousand scenarios – he’s doing great, he’s in remission, he’s starting school, he’s been cured, I dreamed them all. But no, the woman on the other end of the line told me that he had recently passed away.  She made sure I understood that it was from an “unrelated complication” and not as a result of his leukemia. Of course, my heart sank for the family, and I could do nothing at all to take away their pain.

It took about eight months for me to realize that not doing something would not sit well with me for long. This feeling wasn’t going away. I had the idea to maybe have a bone marrow drive, here in our town, in honor of this child and other children just like him. That was nine bone marrow drives ago and we have swabbed well over a thousand people, with seven matches to date. Being a donor will change that person for the better in every conceivable way.

I still think about that little boy every day.

faith-1-of-2 faith-2-of-2

Meet Janine: Surviving and Sharing Her Strength and Best Tips

By | Uncategorized | No Comments

I remember sitting in a doctor’s office on that December morning almost four years ago, watching as the doctor entered with my blood test results. The results would reveal I had AML leukemia. It still gives me chills just thinking about it. I was only 43- years old at the time and had no symptoms except a nasty cold that wouldn’t go away. I was diagnosed after having some routine lab work, a repeat lab test, and finally a bone marrow biopsy. I was in total shock as were my husband and three children.

I went into remission after the standard hospitalization and consolidation chemotherapy treatment, and after six months went back to work. At that time, my hematologist advised that my subtype of AML, although aggressive, was favorable and not initially treated with a bone marrow transplant. A transplant would be an option only if a relapse occurred. I was hoping to never ever hear those dreaded words again: “AML.” However, approximately 15 months later the original leukemia came back along with a new mutation. I was devastated. My physician advised that for any chance of long-term survival, I would need an allogenic bone marrow transplant. So, I endured another long hospital stay and was put back in remission while my siblings were tested for a match. Thank God, my brother, Ed, was a perfect match! I had the transplant on November 26, 2013 at the Moffitt Cancer Center in Tampa, Florida. Everyone at Moffitt was awesome! My husband found us a small apartment close by because we had to live within five miles of the hospital after my transplant.

All I can say is the transplant has been the most difficult experience I have ever been through in my life; but, I have no regrets! I’m so thankful for my loving husband who was with me every step of the way, for my family in Connecticut who stepped up as caregivers in order to give him a much-needed break, and for the many friends and loved ones who constantly prayed for me.

For the past 16 months, I’ve been struggling with Graft vs. Host Disease (GVHD) of the liver as a result of the transplant. It doesn’t cause me any pain; however, I know it could become serious if not treated with steroids and other immunosuppressant medications. I am happy to report that I am four years out from my initial diagnosis, and recently celebrated my two-year post transplant birthday! Along the way, I have learned some tips and insights that might be helpful to someone just beginning this journey.

  • When I was first diagnosed, I created a blog to keep my family and friends informed of my progress. It was much easier than responding to the many phone calls, e-mails and text messages. If you can’t create the blog yourself, perhaps a family member can do it on your behalf.
  • Crying is a sign of strength, not weakness. I rarely cried in front of people when they visited me or asked how I was doing. They would tell me I was strong because I had great faith. But the truth is, behind closed doors, I did cry (and still do sometimes). I’ve come to the conclusion that strong people cry too. I feel better and stronger after a good cry.
  • Realize that a transplant is a marathon, not a sprint! I’m still surprised how often my blood is tested, how many doctors’ visits are needed, and how many medications I still must take. It is simply a part of the “new normal” that everyone talks about. Be prepared for a long recovery time!
  • If possible, find a support group. Although everyone’s journey is different, I find it helpful to talk to others even if they don’t have the same diagnosis as mine. You will discover that you’re not the only one out there dealing with some sort of physical or emotional suffering – or both. If you are not able to find a group in your community or church, there are some available online.
  • Initially I was hesitant about researching information online (because I didn’t want to read anything negative). However, I eventually overcame my fears. I now find myself scouring for information such as this nbmtLINK site which has been so beneficial in finding information about transplants and GVHD. I would highly recommend that you read this wonderful site and subscribe to its emails!

transplant Hewitt FamilyEd (donor) and Janine

 

Mary Clare: Parenting through cancer with grace and strength

By | Uncategorized | No Comments

“Did you find everything you were looking for today, ma’am?”

“Ye—”

“My name is Twila. MY MOM HAS CANCER!”

“No, no, no, remission. I’m in remission from cancer.”

“Oh, okay.  Are you a member of our savings club?”

It was just a typical errand for my five-year-old and me. People have no idea how to react to her unnerving proclamation. She beams with pride when she shares her truth. She’s showing me off in her own way.

My husband and I have been of one mind since all this began. We are honest with Twila and keep our explanations simple. If the questions keep coming, we answer them. Being open about my diagnosis has brought so much support to my family.

I was diagnosed with AML Leukemia in 2014. My daughter was only four. I was lucky that my first six-week stay was before cold and flu season and she could visit most days. She was by my side through much of my treatment. I decided not to shield Twila from what was happening to me on a physical level. She was a witness to my dedicating my whole self to healing and the full-time role of cancer patient. The only part of my treatment she missed was my transplant. No one under 13 was allowed on the floor at that time — stupid cold and flu season. So I decorated my room with her pictures and her art and called as much as we could.

For me, parenting during treatment was very much hands off. I handed over my mom role to my husband and mother. For me, 2014 was dedicated to resting, covering myself in plastic wrap to take showers, post-shower naps and placing pills into my double wide plastic pill organizer. I was not reliable to stay awake long enough to make it through Bubble Guppies and I didn’t have the energy to negotiate the right amount of bites necessary before a meal was done.

Once I was off immune suppression and beyond the constant fatigue, I was released back into normal life. I returned to work and my mother returned to her own home 800 miles away. Snapping back into the routine of parenting was much more difficult than I expected.

I came back to work with something to prove but coming back to parenting was more emotional. I was not entirely ready, it was overwhelming and filled with “BS.” As a cancer patient I learned to loathe wasting time on unimportant things. I have a deep distain for anyone who complains about the weather. My daughter complains about her socks and how her sandwich was cut. My first steps back into the real world were a shock to the system.

Discipline was the hardest. I just didn’t have the heart for it. I internalized that I was the reason she was acting out. She needed limits but I just wanted to hold her.

I’m grateful to have an excellent therapist in my doctor arsenal and a parenting support group. I’m not the same person I was before diagnosis. I’m still not entirely comfortable being in remission. The first five years are like living in limbo. So much uncertainty is difficult to digest for adults. How do you explain the unknown to a now-five year old?

My time each week talking through and reflecting on my feelings was key to moving into a new chapter. Gilda’s Club facilitated the parenting group and at the same time provided a support group for children. I met parents who had been through the worst and were making things work; and others who were in the middle of bad behavior and chemo. The group helps me feel less alone. I have tips and tricks to share and a great deal to learn from those who have been there.

My daughter is also in therapy. It is nothing like my sessions. She plays on the floor of a social worker’s office each week. They paint, draw and play Uno. Children’s therapy is a long and slow process. It is an afternoon that my daughter looks forward to and an allegiance that I cherish. The teachers at Twila’s school are quick to evoke the word trauma when assessing her behavior. Having a professional to confer with and coach me has been essential. I am grateful and fortunate to have found mental and physical support for my family.

I know my illness has shaped my daughter in ways that I may never fully comprehend. I try to focus on how her capacity for empathy and medical knowledge has grown. I may have created a future doctor or nurse. She also is very young and may remember little of these relentless years. I hope she can see that we are powerless against uncertainty, and that love and community are how we survive.

 

Mary Clare B. Fall 2015 headshot Mary Clare B with Twila

Meet Alana Werth, a Peer Support Volunteer for nbmtLINK

By | Uncategorized | No Comments

Here is what Alana had to say about being a buddy. Recently Alana helped a woman in need of support.Alana

“My experience being a peer support volunteer is very interesting. You do not know what will happen when the person you call picks up the phone. Luckily for me, my experiences have all been positive. I volunteer because I want to be able to alleviate many of the concerns patients have. They need to know that they can survive this and thrive even if they do not experience complete remission. Cancer does not always have to be a death sentence. If I can, I will offer them sites that they can go to for the medical questions they may have. I hope I am compassionate to their needs. It is important for them to find a new normalcy in their lives and to never forget to find humor, even when they think that is impossible. The peer support program is very valuable because the patients can talk to someone who has been through what they are facing. We all face things in our own way. I tell them this is what I did and still do. I let them know I am still fighting my cancer but that I am living a full and high quality life. I enjoy being a volunteer because it allows me to help people who want to be reassured that they can face what is ahead for them. It is especially rewarding when one can have an ongoing conversation with the patient.”

Photo courtesy of BMT InfoNet, 2009 calendar

Website Donated by K2 Media, LLC

A Caregiver’s Perspective: Sharon Minton: Rob’s wife, caregiver and lifesaver

By | Uncategorized | No Comments

“When we met Rob a few months ago, it was clear his wife Sharon played a significant role in his care and survival. Met the Mintons, hear their story and you too will recognize and applaud the efforts of an extraordinary caregiver-.”
Peggy Burkhard, nbmtLINK

In May of 2012, my then-53-year-old husband Rob Minton broke out in an itchy, red rash around his abdomen.  He went to his primary care doctor who told him that his skin was probably sensitive to our laundry detergent or the soap he was using. He sent Rob to a dermatologist and an allergist to have lots of tests done along with several skin biopsies.
Rob was told that he had dermatitis and psoriasis and was given steroids to control the condition. That seemed to help temporarily, but then the itchy, red rash would come back worse.  It spread over his entire body.  He looked as if he had a bad sunburn.  His skin started peeling off and he would swell up from head to toe. He would get infection after infection; staph infections, MRSA, and pneumonia.  We were frequent guests at local emergency rooms.

After several different doctors could not identify what was happening to my husband, we decided to go to Mayo Clinic/Jacksonville (a 2 ½-hour drive from our home) to have some further testing done.

I had been doing a lot of online research by Googling Rob’s symptoms and found a very scary diagnosis that seemed to exactly fit what was happening with my husband: an extraordinarily rare cancer called Sezary Syndrome – a type of Cutaneous T-Cell Lymphoma that affects the blood, skin, and lymphnodes.

Although it is very difficult to diagnose, the doctors at Mayo Clinic began to suspect that Rob could have this type of cancer.  After months and months of testing, he was diagnosed in early November of 2013 with Stage 4 Sezary Syndrome.  We were told that he had a 25 percent chance of living up to five years.  Our family was devastated. If it weren’t for my strong faith, I believe I would have fallen apart.

A gentleman named Neil Dicker, whose story was on a website for Cutaneous Lymphoma, sounded exactly like Rob’s.  He was diagnosed with Sezary Syndrome in 2005 and had an Allogeneic Stem Cell Transplant in 2009.   We contacted him to talk with him about his experiences.  He was tremendously helpful.  His suggestion: get onto the bone marrow recipient registry while doctors try to get Rob into a remission.  Since there is no cure for Sezary Syndrome and remissions from chemotherapy treatments had shown to be temporary, an Allogeneic Stem Cell Transplant (SCT) was Rob’s best hope for a lasting remission.  We let the doctors know that was the path we wanted to follow.

Rob was put on the bone marrow registry in January of 2014 because his only brother was not a match.  At the same time, his oncologist started him on a chemotherapy drug called Bendamustine to clear the cancer cells in his blood. He finished his chemotherapy treatment that May and was pronounced “in blood remission.”  In early July of 2014, we received a call letting us know that an 8-out-of-10 HLA match had been found.

Rob was almost ready for his stem cell transplant, but had one more treatment to get rid of any remaining cancer cells in his skin.  He had total skin electron beam radiation therapy, four days a week for eight weeks.  It caused him to lose all of his hair, but cleared his skin of any remaining cancer cells, in preparation for the transplant.

Two weeks later, we went up to the University of Florida in Gainesville (where his transplant would take place) so Rob could go through several days of extensive physical, dental and psychological exams to make sure he was able to go through the procedure.  He had been working out often during his treatments

Rob and Sharon Before Transplant

Rob and Sharon Before Transplant

to stay in the best physical shape possible.
We also had to make arrangements for where we would live after he was released from the hospital.  We couldn’t be more than 30 minutes away for emergency purposes after he was released.  We found a furnished apartment to rent located directly across the street from the hospital.  A few days later, we both moved into his hospital room on the 7th floor Bone Marrow Unit at Shands Cancer Hospital in Gainesville where we would spend the next 17 days.

On October 2, 2014, Rob was admitted to the hospital after he had a small surgery to have the Hickman (Tri-fusion catheter) placed in his chest.  This device would be the means through which he would receive all of the chemotherapies, fluids, blood transfusions, platelets, and even the new stem cells. He was hooked up to this huge IV pole that would become his constant companion until he left the hospital. Rob began his first round of the chemo and drugs that would be given over the next several days to wipe out his own immune system in preparation to accept the new donor stem cells.  Some of these drugs made him quite sick.  As awful as he felt, we would make sure that he would get up out of bed and walk his laps around the unit, IV pole in tow!  Getting exercise is necessary both physically and psychologically. He would also get up each morning and shower and get fully dressed.  We felt that was important to help him feel more like a normal day and not a sick-in-bed day.

October 7 was “day zero” – transplant day!  We had a “new birthday” party for Rob in his room, complete with presents, balloons, and a cake.  Our children, my sister, and Rob’s brother were all there to help celebrate and watch as the new donor stem cells were infused through Rob’s tri-fusion catheter. These healthy new donor cells would give Rob and our whole family a renewed life together!

The days ahead would not be easy, by any means. Rob had to be monitored very carefully. I felt so fortunate that we had such a great team of doctors and nurses at Shands Cancer Hospital Bone Marrow Unit. They watched all of his counts, blood pressure and temperature closely. He would get blood transfusions, platelets, or be taken for an x-ray at all hours of the day and night.

Rob didn’t have much of an appetite and he didn’t find the hospital food appealing at all. I would run out to the store to pick up whatever sounded good to him, just so he would eat. His diet was pretty restricted, so finding something he could eat that sounded appetizing to him was a tricky task.

Rob continued to improve and was ecstatic when the doctor said that he could be released to live in the apartment that we had secured. Seventeen days in the hospital for an allogeneic stem cell transplant is a bit shorter than the standard, but we believe that Rob’s positive attitude and daily physical activity helped a lot.

I went over to the apartment a day ahead of Rob’s arrival to completely clean it. And when I say “clean,” I mean disinfect EVERY corner by wiping down all surfaces with a bleach solution, vacuuming all of the air vents, and making sure that there was a clean filter in the air conditioner/furnace. In Florida, we have to be aware of molds and fungus. It was crucial for Rob to be in a clean environment because his new immune system was very much compromised.
On October 24, I was able to go to bed without nurses and doctors constantly coming in to check on my husband all night long. I was really glad, but, at the same time, I was nervous. I was now completely responsible for caring for him, for keeping him safe, for taking his temperature every day, for keeping him germ-free. It soon became routine, and was not as difficult as I had anticipated. We would take our daily walks to the hospital, where we still spent hours every day in the outpatient clinic of the Bone Marrow Unit. Rob had to get IV fluids and blood work regularly.

On day +46, Rob’s team of doctors gave him a weekend pass to travel the 2½-hour drive to go home! We were both so glad to be able to sleep in our own bed again, if only for a couple of nights. It was wonderful to see family, as well. My sisters, my parents, our daughter, and a couple of friends had been taking shifts, staying with our 14-year-old son so he would be able to carry on with school and everyday life while we were temporarily living in Gainesville. We were blessed to have that help so I was able to completely concentrate on Rob and his recovery.
Rob’s health continued to improve over the next weeks. We would take short day trips to interesting places around Gainesville. This really helped both of us appreciate, together, the new lease on life that we’d been granted. Rob would still get very fatigued quite easily, so I was careful not to push him to do too much. On Day +70, just over a week before Christmas, we were given the “all clear” to move home! Although we would be making weekly trips to Gainesville, we were overjoyed to be living back in our own home.

We had a celebration on January 15, because that was Day +100 since his stem cell transplant! Day 100 is a turning point in the recovery process, as that’s when the greatest risk for critical sid

Rob and sharon After Transplant

Rob and Sharon After Transplant

e effects has passed and engraftment is complete, so new blood cells are being made. Rob had fully transformed from his former blood type (O+), to the donors blood type (A+).

For the next few months we would still be making weekly trips back to Gainesville for blood work, IV fluids and sometimes platelets. I continued to make sure that Rob avoided being around crowds and especially that he stayed away from anyone with a sniffle or cough. I made sure that he didn’t do anything in the yard that involved touching the soil and that he stayed out of the sun. He’d still be on quite a few medications for a while, so I was often running out to get prescriptions refilled. He would exercise daily, whether it was a walk or a workout in the clubhouse gym (but not before wiping down the equipment with antiseptic wipes and also wearing protective gloves). Patience, perseverance, and positivity were all key factors in my husband’s recovery.

Today, Rob is 16 months post-transplant and feels very well. He still gets fatigued, which is normal, but is living life to the fullest. Thankfully, Rob never had any issues with graft versus host disease. We are grateful every day to his wonderful donor, all of his doctors and the staff at Shands Cancer Hospital and for the renewed life that God has given to Rob and our entire family.

-by Sharon Minton

Survivorship Means Victory: Evelyn’s Survival Story

By | Uncategorized | No Comments

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

By | Uncategorized | No Comments
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

By | Uncategorized | No Comments
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.