There are roughly 65 million people in this country serving as caregivers either to an aging adult, a family member with a debilitating diagnosis, or an adult with disabilities. Of this roughly 20% of the population, many are also caretakers of minors in their homes, are trying to earn a living for their families, and are carrying a multitude of other responsibilities that frankly can be exhausting. To strengthen the person who supports the one battling the illness, is to strengthen the team. This may involve learning new strategies or receiving support from other resources.
I’d like to illustrate this point with a visual analogy for you. Imagine holding a glass of water in your hand with your arm fully extended out to your side.
Your body is designed to be able to do this for a short time before you start to feel the strain. If you were expected to be able to do this beyond half an hour, you would probably start to find creative ways to compensate. Perhaps you would start to lean your hand on a wall, or ask a friendly face to help you support your arm. Yet imagine if you were asked to do this for hours, days, months or more. You would need to develop a whole new skill set.
You would have to learn about efficient ways to manage your load, where and how to get help when you need it, and how to manage the inevitable effects this challenge has on you. The same can be said of the caregiving journey. Our bodies are designed to deal with high stress in sprints. When we enter into this new arena, we often need to develop new strategies that enable us to survive during a “marathon” of stress. Some things will be out of your control, but how you choose to run this race is up to you.
We want to run beside you, supporting and encouraging you, as you are on your journey. Although Caregiver Appreciation Month is not until November, nbmtLINK wants to start the celebration early by honoring these sometimes-forgotten heroes. Mark your calendars for September 26th, October 3rd and 10th. We have designed a series just for you – to feed your soul, to offer you expert advice, and to help you navigate through the maze of caregiving. There is something for everybody at all stages of caring. In addition, anyone who calls the LINK or emails us through November will be able to receive one free copy of our caregiver book. So treat yourself today by calling us at 1-800-LINK-BMT or emailing us at firstname.lastname@example.org to receive your gift. You also can go to our website or email us to register for this great series. Let us provide a refreshing boost to you as you run your “marathon.”
Like many other patients, I learned about your organization as I began preparing for my stem cell transplant in 2002. Diagnosed with AML at age 29, there weren’t many people in my peer network for me to turn to. There were only limited resources to help me understand what a stem cell transplant would mean to me. I remember ordering and watching the nbmtLINK video, “The New Normal,” and it really helped me to prepare for what was to come.
My stem cell transplant was performed at the University of Minnesota on July 26, 2002. My donors were umbilical cords – two to be exact – donated from two wonderful families I did not know. I was part of a clinical trial that was testing the efficacy of umbilical cord stem cells in adults. And I’m very happy to say that it worked. Fifteen years later, I am healthy and going strong!
I have made it my mission in life to use my own experience to help raise awareness for umbilical cord and bone marrow donation. In fact, one of my friends who registered as a bone marrow donor during my illness was just called to donate her stem cells to a patient in need. Also, I am working to raise money for Gateway for Cancer Research, an organization that funds clinical trials designed to help patients live longer, feel better or be cured today. I raise money by running half marathons, and plan to do one in every state. To date, I have raised over $67,000 and have completed races in 40 states.
Thanks to all of you at nbmtLINK for all you do on behalf of transplant patients. It is truly a blessing to know people who care and want to help during a very difficult time. I also really appreciate my Happy 2nd Birthday cards! It’s a great idea and a happy reminder of how far I’ve come since July 26, 2002.
Congratulations on your 25-year milestone this year. I know you have made an important difference in many patients’ lives during those years.
I’m also attaching a photo here of me stopping to smell the flowers on my run home from work during spring marathon training last year.
I can categorize my story with an analogy to Charles Dicken’s “A Tale of Two Cities.” The main theme throughout his story is, “recalled to life.” What Dickens meant was the characters had a new chance at life. The entire story revolves around that theme. The main character is scheduled to die and is saved by an unrelated person whom he did not really know. Doesn’t that sound familiar to anyone who has had a bone marrow transplant?
At 71 years of age I was “recalled to life” and a new chapter started. I was diagnosed with Acute Myeloid Leukemia (AML) in December 2012 with a very pessimistic diagnosis. “Why me?” was my first thought. Some of us thought that the disease might have been the result of my being down at Ground Zero on 9-11. I worked there every day after it happened, breathing in those carcinogens. Some would think that this diagnosis would be the end of my story. However, not taking a defeatist attitude, my wife, Merle, and I resolved to fight this blood cancer by doing everything we could.
Well, what did that mean? We both had to agree to each treatment decision. We were in this together, through thick and thin. Initially, my first oncologist, Dr. Christina Ghiuzeli, placed me on a regimen of light chemo because of my age. I also agreed to participate in a clinical study while undergoing treatment. The chemo that I was taking did not have a long-term effect for preventing the cancer from coming back, full-blown. I was pretty much at the limit of fourteen months and Dr Ghiuzeli did not have any stats for staying on the chemo regimen for longer than that. She stated that the cancer cells get smart and the chemo would no longer be working.
Decision time: We had two choices: either continue with the light chemo or get a bone marrow transplant. Physically, I was in great health (in remission) and also had been a runner for 35 years. If I was going to do a bone marrow transplant, now was the time. We went to three different hospitals to discuss the best treatment (Northwell, Cornell-Weill – New York Presbyterian, and Stony Brook University Hospital). The consensus was to do a bone marrow transplant.
That was a very difficult decision to make. Should we go into New York City, further out on Long Island, or stay close to home? We went to Northwell to talk to the Director of the Bone Marrow Unit, Dr. Ruthlee-Lu Bayer. We must have visited with her three or four times before we decided to proceed. Since Northwell was close to our home that was one of the deciding factors. In this way, Merle could easily visit. Dr. Bayer had great credentials, which was another deciding factor. Northwell had an excellent program. We went through an orientation with a nurse practitioner, which further reassured us that we were on the right path.
My Bone Marrow Transplant Journeys:
March 13, 2014, was my first “recall to life.” It took a while to find an unrelated donor. He was not a perfect match. The transplant was a success. The doctors and staff came to my room to celebrate my new birthday. I spent thirty days in the hospital with virtually minimal side effects. That was very surprising, after everything we were told that could happen. I was well on the way to remission for five months. Then unexpectedly my blood counts dropped substantially. Then the bone marrow transplant failed. Dr. Bayer reassured me that we could find another donor. If that failed then we could have my younger daughter, Hillary, donate her stem cells via the peripheral blood method. My first donor had had his stem cells taken from his hip.
To continue my tale, Hillary was tested successfully. She donated her stem cells through her peripheral blood. I had my second bone marrow transfer on September 23, 2014. I continued to be optimistic that this would succeed. I spent another thirty days in the hospital in the bone marrow transplant unit. The doctors and staff couldn’t have been more professional or caring. This second time around I had many more complications. The support from doctors, nurses and aides helped me through the worst times. One nurse practitioner would come into my room at 3:00 a.m. to check my vitals. We would talk till morning dawned on many different subjects, which buoyed my spirits.
Advice I received prior to going through both transplants was to have a project to work on. Since I had an information technology background, I taught some doctors and nurses how to use their smart phones and some computer applications. It helped take my mind off of what I was going through. In addition, Merle came to the hospital every day, early if she was not working; otherwise late, after work. She brought me homemade dinners, a relief from hospital food. I also had many visitors.
Graft vs Host Disease:
My next challenge to overcome was GVHD. I was really unprepared for each of the occurrences I had. Having my wife as my caregiver was essential to helping me through this disease. I experienced loss of appetite; loss of weight (I lived on Ensure); rashes; skin flaking; Gastroesophageal reflux disease (GERD), where I thought I was having a heart attack; hiccups; hardening of skin on hands and feet, which peeled off in large pieces; running eyes; fatigue (I could sleep a whole day); night sweats; and chills. I thank God for my support group of family, friends, and hospital support staff.
GVHD is still with me. However, I am past most of it. My only issues now are related to skin conditions. I bruise very easily because my skin is thin. Support groups are great for discussing these issues and knowing that you are not alone. It helps to see how other survivors cope. The nbmtLINK conference calls were special for imparting knowledge about GVHD and talking to others with the same disease. I know that just being here after transplant is the most important thing. I can deal with everything else.
Next Chapter: So, where am I now with respect to my leukemia? I am in remission! I feel great and am trying to resume a normal life. My activities include exercise by walking–using a stationary bike, golf (I never played before, but my brother pushed me to start) and I go to our senior center twice a week to play cards. I also attend two support groups; one is sponsored by Northwell Hospital, and offers only discussion opportunities with other survivors. The other is sponsored by LLS. This support group is called “Survivors in Motion,” in which the meeting offers a different activity each week. We start with a walk, and then we participate in other activities including, Tai Chi, art, bowling, physical therapy, and a gym workout. Additional sessions included sharing our stories and hearing various speakers.
For the last fourteen years, Dr. Bayer has sponsored a “Celebration of Life” sit-down dinner at a country club on Long Island. The last one we attended had four hundred survivors and spouses, donors, doctors, nurses and aides. I was televised by the news media meeting my first donor. I am still in touch with him. Dr. Bayer flies all donors in for the event, no matter where they live. Seeing all the survivors is truly uplifting.
My family participates in the “Light the Night Walk,” sponsored by LLS at Eisenhower Park near our home. This uplifting event is attended by thousands of people. Everyone receives a lighted lantern, white for survivors, red for caregivers and yellow for family. To motivate me, my wife and I walk for Charity Miles. This is an application on our iPhones, which counts our steps. The sponsors of the application donate to the charity of our choice based on miles walked (sponsors include organizations like Nike, Johnson & Johnson and others. Being positive and keeping active are keys to being healthy and leading a normal life.
I won’t go into all the details of my journey with non-Hodgkins lymphoma, but my story began in November 1999, when I was diagnosed as a grade two (follicular mixed) NHL stage, III. I did well until June 2004 when I developed bilateral pleural effusions. I had to have multiple thoracenteses and a tube was placed in my chest. After receiving the second course of Rituxan CHOP (also referred to as R-chop), the effusions abated. A month later I presented with nodules on my lower back area. Biopsies showed transformation to an intermediate-grade, diffused, large B-cell lymphoma and a follicular grade-3 lymphoma. The disease progressed to the breast, the abdominal wall, and eventually, invaded 10 percent of the bone marrow.
At that time, I was selected to receive an allogeneic BMT from an unrelated donor because no one in my family was a match. Fortunately, a donor was found. The story continues.
I had all the usual BMT problems and fought the fight with GVHD and viruses; and, here I am today. Ten and a half years later, I am enjoying life, working part time at age 73, and I’m able to do all the things I want to do, especially enjoying my family and friends.
One day, as I was lying in the hospital bed, I thought, “Why me, Lord; why am I so fortunate to be at this point in my life when I see others younger than I am, not making it this far?” There must be a reason.
Then I thought about all those special people who helped to get me where I am. Besides family and friends, there was my donor – bless her – and my “buddy” whom I had never met but who was there to support me and help me along the way. The answer came to me right away. I want to be like all of them.
I want to help those who are going through this challenge and to try easing their minds. That would be one way I could help their bodies heal; not only physically, but mentally as well. From experience, I know how important this healing is. After a few years of my own healing, I called the nbmtLINK and talked to them, did my homework, and read as much as I could.
Then came the day and that first phone call to help someone. This person welcomed me and I could sense the relief in her voice. I could say to myself, and to her, “I know how you feel.” I call this opportunity “paying it forward.” There is nothing like that feeling!
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?
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.
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 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!
Here is what Alana had to say about being a buddy. Recently Alana helped a woman in need of support.
“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.”
“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
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
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.
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
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.
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.
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.
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.
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.