All posts by Peggy
By: Jennifer Gillette, LMSW of nbmtLINK
There are so many things in life that we need to be patient and wait for. When we wait for health to return, the pandemic to end or significantly improve, or when we wait for any crisis to be over, can we shift our focus to invest in the future we hope for as we try to cope with the present situation?
I was born in Ghana, West Africa, with Sickle Cell Disease (SCD). In 1995, I migrated to the United States, and in 2003, was diagnosed with Multiple Sclerosis (MS). In 2010, I underwent stem cell transplantation, which cured me of SCD and MS. At the time, both diseases were understood to be incurable. Granted, stem cell transplantation was still in its experimental stage. However, I was fortunate to have received a two-for-one outcome. Having experienced this breakthrough cure, I have made it part of my life’s mission to promote bone marrow transplantation by highlighting how life-changing being a donor can be – for both the donor and the recipient.
Life with SCD and MS:
I had lived with SCD for almost 38 years; and had experienced multiple pain crises each month. MS flare ups and pain affected my life every day. Even though I carried the SCD, my whole family suffered through its events with me. As a woman, I dreaded each time I went through my menstrual cycle. Something that was a normal experience for most women was, for me, a pain crisis of one kind or another. After my MS diagnosis, I went through a period of time when I was angry at the world, angry at God and severely depressed. How was I ever to live a productive life? It seemed that there was no light at the end of the tunnel for me. I woke up in pain and went to bed in pain. The list of medications I was taking was quite lengthy; and I struggled to maintain a part-time job.
Thanks to stem cell transplantation, my life has changed dramatically. So many of the things I am able to engage in now, not too long ago, I could not have done. Although I had heard of Stem Cell Transplantation being a possible cure for SCD, I never dreamed I would even be considered a candidate for this procedure. I never thought I would have the opportunity to undergo such a ground- breaking procedure.
In 2010, after a series of testing of my parents and siblings, I was informed that my mother was a match for the bone marrow transplant. It was an exciting day for us. Although she shared with me how happy and grateful she was to have this opportunity to be part of a cure for me, I can only imagine the anxiety she had when considering the possibility that the transplant might not work. My mother and I have great faith and we placed our complete trust in God.
The momentous day occurred on November 18, 2010. It was a day like any other for most people. But for me, it was the day that would change my life forever. This life, which had been filled with pain and struggles, was about to end. I was aware of the complications that could arise, and of the possibility of rejection. I tried to think positively and not dwell on the negative aspects of this process.
As the cells made their way into my veins on that day, I knew my life would not be the same. After being in the hospital for weeks, I was told that not only had the bone marrow cured the SCD, it had also cured the MS. A neurologist confirmed this to me months later.
I have since been able to live a productive life without pain or flare ups of MS. Not only do I have a full-time job and I am also able to engage in activities I could never have imagined myself doing before. I have been living on my own for the last five years and am able to walk several miles a day. I am excited about the possibilities life has to offer, and I am most grateful to science. New developments in science, specifically the important advancements in gene therapy, are what have brought me to this place – to this life that is free of pain, numbness, and depression. I encourage people to be donors because you never know what a difference you could make in someone’s life.
I remember it being a crisp spring day in 2010; I was finishing my sophomore year at St. John’s University. My roommate’s fraternity had to host a last-minute philanthropy event on campus and they chose to hold a Bone Marrow Donor drive. So there I was, walking across the campus to meet my friends for lunch and I heard my friend calling my name while standing in front of a TV tray table waving furiously at me to come over. When I approached, he told me what they were doing and asked if I would register. He said that they had not been that successful and I would probably never be contacted. I then filled out a form, swabbed my cheek, and was once again on my way to lunch.
My sophomore year ended and my junior year blew by. It really wasn’t until senior year that I felt I finally had this college thing figured out. One morning, sometime in November, I noticed that I had a missed call and message from a number that I did not recognize. I ignored it and went about my day. I received another call from the same number and finally answered out of curiosity. The woman on the line told me that I had matched and could possibly give someone a second chance at life. She began telling me about bone marrow, needles, extraction, shots, and hospital visits. It was very overwhelming. When I registered, I did not receive much information and was told that I probably would never be contacted. The biggest factor for me when deciding to proceed with donating was the thought that somewhere in the world was someone who was very sick and needed me. I instantly agreed and asked for the next steps.
The next steps involved making sure I was healthy and a viable candidate for donation. I went to a lab for some blood work and then to Memorial Sloan Kettering for a thorough physical. Everything went well but the timing of the donation changed the location because I was going home to Rhode Island for winter break. The fantastic team I worked with was able to arrange my donation to take place at the Rhode Island Blood Center the week of Christmas. I was excited to finally donate but a week prior to my donation, I shattered a bone in my right arm and the injury required a hard cast. I called my coordinator to let her know and thankfully my veins were still accessible with the cast in place.
The last steps leading up to my Peripheral Blood Stem Cell donation was to receive a series of shots of a synthetic protein to boost my stem cell counts. Because these injections made my body work at an accelerated rate, I felt slow-moving and a bit achy. I had four daily injections and on the fifth day, I went to the Rhode Island Blood Center for the collection. The collection process itself was actually pretty boring. I lay back in a chair as my stem cells were collected from my blood. The eight-hour collection went by fairly fast with a chatty medical team. As I was leaving that evening, my coordinator let me know that the recipient of my donation would be receiving my cells on Christmas morning.
About a year after my donation, I received a letter in the mail from my recipient letting me know that the transplant was a success. He told me that he had wanted to travel the country with his wife as he had just retired, but his plans were on hold so he could fight leukemia. He was happy to inform me that the plans were back on and he and his wife would soon be setting out on their journey. It was amazing to get an update and I was very happy that I was able to help him to fulfill his dream.
I thought that my journey in bone marrow donation was over at that point and I began working in career education for teenagers. One day, I found a job posting by DKMS for a donor recruitment coordinator. I instantly jumped at this career path. Long story short, I have been at DKMS for two years recruiting more potential bone marrow donors. Sometimes I think that I got more out of the donation than the person who received my cells.
I am a cancer survivor. In December 1993, I was diagnosed with Chronic Myelogenous Leukemia. The following June, of 1994, I had a bone marrow transplant.
When I was diagnosed, I immediately started a regimen of chemotherapy drugs. While I was doing well with the drugs, I was concerned about my future. It was determined that my life expectancy would be about three years. I asked my hematologist about the possibility of my having a bone marrow transplant. He told me that I would not be eligible because I was 54 years old. His answer bothered me because other than finding out I was sick, I actually felt fairly healthy.
Not willing to simply accept his answer, I began to research what hospitals and hematologists performed transplants. I gathered all the pertinent information and asked my hematologist for his input regarding obtaining a second opinion. He was very supportive of my thinking, and said he knew of a hematologist at the Detroit Medical Center. I scheduled an appointment at the DMC and, thankfully, learned that I would be eligible for the program.
Because of my age, I was not eligible for the donor registry; and a family member would have to be the donor. My younger sister was a match. I also was informed that the cut-off age for the transplant is age 55. That was in March of 1994. My birthday is in September so scheduling the transplant soon was imperative.
The reason I chose to share my story, happily some 23-plus years later, is to explain the extreme importance of seeking a second opinion. Whether you stay with the doctor you see for a second opinion, or remain with your current doctor, the knowledge you gain will help you to decide which course of treatment is best for you to follow. Be your own patient advocate when your life is on the line. Taking care of yourself is vital and gives you peace of mind. In my case, getting a second opinion saved my life.
I wish you the very best of good health as you continue to live your life as a cancer survivor.
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 email@example.com 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.
So, this next chapter is still being written. I will keep on surviving!
I would like to share an apropos quote from Joshua J Marine:
“Challenges are what makes life interesting and overcoming them is what makes life meaningful.”
I am open to being contacted; feel free.
Lewis J. Christie
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.
Cathy shares her story through her blog post. For more visit, http://marrowadventure.tumblr.com/post/146741635105/one-year-ago
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.
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!
“Did you find everything you were looking for today, ma’am?”
“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.
“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
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It’s time to get our blog going. We are rounding up posts and inviting patients, caregivers and health care providers to share, share and share some more. We learn from each other and therefore we can help each other. Will you consider joining us? If you would like to be a guest blogger, please contact Peggy Burkhard at (248) 770-5172 cell or (248) 358-1886, or email, firstname.lastname@example.org.
We surely look forward to hearing from you soon!
I ask you this—what do you know now that you would love to share, as a patient, caregiver or health care professional, with someone newly diagnosed and about to start the bone marrow transplant journey? I look forward to hearing from you. – Peggy Burkhard, Executive Director, nbmtLINK