I will never forget the phone ringing that night and my doctor’s voice on the other end asking me to put my husband on the line because she had some difficult news. I heard the word leukemia and I heard her say I needed to come to her office in the morning.
Then, all the air left the room. I couldn’t breathe. I couldn’t think. Did she just say I had leukemia? Am I going to die? What is happening? I’m only 46. My head was spinning. When I was able to focus I saw my youngest daughter, Elyssa, standing in the room crying. All the questions running through my head stopped. I stopped crying, hugged her, and looked into her eyes and told her everything was going to be ok.
The next morning my doctor told me that I had Chronic Lymphocytic Leukemia. She set everything in motion for me to see an oncologist for care and further testing. She tried to reassure me by telling me this type of blood cancer is slow growing and I likely won’t need treatment until I am much older. My husband and mum seemed reassured. It didn’t make me feel any better, but hearing that I wasn’t going to die tomorrow … I’ll take it.
My first appointment with the oncologist was mostly lots of labs and lots of reassurance that I wasn’t going to need to worry about this for a very long time. She said the plan is called “watchful waiting.” I remember thinking to myself that she left out one of the “w’s” – the one for “worrying.” It didn’t sound imminent; however, I hadn’t totally bought in yet.
My next appointments were not as reassuring. My lab results indicated I had several positive “markers” for the aggressive form of this leukemia and I needed to go to Dana Farber. I was so scared and so incredibly lucky that Dana Farber wasn’t too far away. Not that distance really mattered. I could see on my husband’s face that he would take me anywhere I needed to go.
The past year has been a roller coaster for me. “Don’t worry you won’t need treatment for years.” “Oh wait, you are going to need treatment sooner than we thought.”
Go to Boston. Wait again. “We’re not sure if your ER visits for swelling in your throat are related to the leukemia.” “No, wait, we think it is related.”
Having ongoing difficulty swallowing? “Carry these Epi pens with you at all times, just in case.” “Oh, take these meds, too. Your ‘numbers’ have doubled already.” “You need treatment.” “Wait, you need to get into a clinical trial.”
Wait. Wait. Wait.
I couldn’t just wait. I was scared. I was worried. My family, friends, and colleagues were worried. I needed to do something.
I already knew about the Leukemia Lymphoma Society. Being the fourth one on my mother’s side to be diagnosed with Leukemia, I had already made many donations over the years hoping that it would help my cousins. Now, I needed the help.
One of the first things I saw on their website was information on the “Light the Night” events. I immediately signed up for the 5k walk in Nashua. Wow, this already felt much better than worrying! Now I just needed a fundraising goal, a team name, T-shirts, and a team.
This was going to be more difficult than I thought since I had not told many people about my diagnosis. But, I went ahead and entered a lofty goal of raising $300, asked my family to be my team, and ordered a few shirts. My son, Josh, suggested the team name “Chafing the Dream.” Perfect. My daughter, Audrey, went on social media to spread the word that we were raising money for LLS.
What happened next filled me with so much love and hope. My team grew. Donations came in from so many supportive people. I watched my neighbor’s young niece walk up to the booth at the walk and donate money from her piggy bank. All of it. All $85 of it.
I walked the 5k that night surrounded by loving supportive people in my life. I walked every step. Me, with arthritic knees that hurt on a good day, who is tired every day now, who is overweight, and who is completely out of shape. I did it. And, we raised $5,000!
That day I felt such power from the love and support of my family and friends. They love and support me every day … I’ll take it. It makes all the difference on this journey.
At my next appointment I told my oncologist about our team, about our walk, and about raising $5,000. She stopped what she was doing, stood back, and told me that the money we raised for LLS was going to help finish research on a new promising drug for CLL. That was in October 2013.
In February of 2014 the FDA approved inbrutinib, a promising new treatment for CLL. I am currently waiting to start treatment in a clinical trial at Dana Farber….with hope.
-Written by Martha Clark. Nashua Light The Night team captain, mother, wife, and currently undergoing treatment for CLL.