By: Laura Weinger Housley
I am glad to be here. Literally.
Being a survivor is a good thing. I could have been six feet under after being diagnosed with acute lymphoblastic leukemia (ALL) on December 16, 2000. I was 40 years old, raising two children with my husband, Ron. Our daughter was almost 4 years old and our son was 16 months.
When I was diagnosed, I spoke with an ALL survivor. Hearing her voice on the phone gave me so much hope. She was seven years post-diagnosis. I told her, “I can’t wait to be on your side of the fence.” About two years later, I was … on the other side of the fence, having gone through training to be volunteer. It makes me feel good to help others. When I was in the hospital, my mother said to me, “Who knows? Maybe you will be a spokesperson for the cause someday.” I responded by telling her, “no way.” I did not want to be a member of this club.
Well, thank goodness I have become a member, because I would not have wanted the alternative. Being a survivor, I wonder, “Is this who I am? Is this how I will be known for the rest of my life?” I remember a friend introduced me to a friend of hers who told us, “Oh, you two have a lot in common!” She had breast cancer. Is that all that I am to people: a cancer survivor?
After completing six months of chemotherapy, I thought I was finished and could get back to my life. One year after my initial diagnosis I had a relapse, and it was determined that my best option for survival was a bone marrow transplant. One year after my transplant I was off of all transplant-related medications. Then the real healing began.
At the time of my transplant, which was in March 2002, there were no programs for survivors. I was medically better, but emotionally, I was a wreck. The reality of what I had gone through had hit me and I became depressed. I met with a therapist who specifically talked with cancer patients. After months of not wanting to take an anti-depressant, I decided I wanted to feel better, so I began the meds. They helped. Also, I was asked to participate in survivor focus groups at a local hospital. I would like to think that my attendance helped to create the Reiki, Yoga, cooking classes and other programs that are now available to patients and survivors.
What also helped was being physically active again. Even though I did not have much strength, I began going for walks in my neighborhood. To build up my strength, I joined a gym. When I felt stronger, I took fitness classes, which made me feel good physically and emotionally; they still do.
Everybody is different and people recover at different rates. I was tired for two years after my transplant. No one should feel like they are less of a person if they are not living up to someone else’s timetable on where they should be, medically or emotionally. Each person’s body responds differently to treatment and one person’s cancer may be different from another’s.
The reality about surviving cancer is you think when your treatments are over, that you’re finished; but it is with you for the rest of your life. After I recovered and, let’s say, would develop a sore throat, I would think, the leukemia was back. Anything that happened to me or still happens, I blame on this disease. Some issues, such as becoming deaf in one ear, were the result of leukemia and of all the treatments I had received. Another, was being diagnosed five years after my transplant with white melanoma, which appeared in my thumbnail and led to the removal of half of my thumb. Also, my iron levels were high because of my many blood transfusions. So I required phlebotomies to remove the iron from my blood. It’s like donating blood and then the bag of blood is thrown out. I did that every other month for a couple of years. Recent blood work came back showing high iron levels, so I have begun phlebotomies again.
I recently had a colonoscopy (my second). When I woke up, I was crying and the nurse asked me if anesthesia makes me cry. I told her no. Being in a recovery room brings back memories, so I become emotional. Also, every year, on December 16, I get teary-eyed, reliving that fateful day in 2000. Time does heal, but it was the day that changed my life. I do think of my life “before leukemia” and “after leukemia.” A friend once asked me why I don’t celebrate the recovery date instead. I told him there was no exact date when I felt better, because it was a gradual process.
I used to cry whenever I passed the hospital where I was first diagnosed. Before leukemia, it would bring a smile to my face, as it was where my babies were born. Now I see it as the place where I was so ill. But I had wonderful people who took care of me and I returned last month, my 15th anniversary, to have lunch with my favorite nurse. She appreciated it so much. Nurses like seeing a positive result of their care and I am proud to be an example of that.
I still get blood work done at least twice a year. I also see a dermatologist, nephrologist (kidney doctor) and cardiologist, because it is not known what long-term damage treatments may have done to my organs. The doctors know I will not wear a gown, because it reminds me of being sick.
As a long-term survivor, I can tell you that I now have energy and any lack of it is because I am older and not because of leukemia. Intimacy with my husband was slow going for a while, but it did return. Sometimes I wonder if I will die sooner because I had leukemia; but there is no way to know.
The best part of being a survivor is being present for life’s events, which is what kept me going when I was lying in a hospital bed. Whether it was walking my daughter to school on her first day of kindergarten or crossing an item off my bucket list, living life is very fulfilling. Watching my children grow up makes me emotional, because I think, “What if I were not here to experience this?” But more importantly (which was my main reason for fighting leukemia), I had to be their mother.
I am not working now, but I am busy taking care of my family, keeping myself healthy, taking a dance class, and volunteering at school and for The Leukemia & Lymphoma Society and the nbmtLINK. I do like feeling useful, productive, and important, especially when these helpful organizations ask me to speak at an event, to write a blog, or to be interviewed for an educational video. The social workers at the hospital where I had my transplant will ask me to talk to patients or participate in an event. I am embracing what my mom told me 15 years ago in the hospital: “Maybe you will be a spokesperson for the cause someday”.
Leukemia will always be a part of my life. But it is now on the back burner instead of the front.
This blog was originally featured as an The Leukemia & Lymphoma Society blog piece. We thank Laura and The Leukemia & Lymphoma Society for letting us share her wonderful story.