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!