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Survivor Pat Sears on Paying It Forward Through the nbmtLINK Peer Support Program

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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!

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

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

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

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

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

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

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

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

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

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

Thankful and Thriving — Yes, you can do it!

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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

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

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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.

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Meet Janine: Surviving and Sharing Her Strength and Best Tips

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

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

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

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

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

transplant Hewitt FamilyEd (donor) and Janine

 

Meet Alana Werth, a Peer Support Volunteer for nbmtLINK

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

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

Photo courtesy of BMT InfoNet, 2009 calendar

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