“My Voice” by Sarah Jones

Sarah Jones - 'Survivor'

It was ongoing anemia that brought me to a hematologist, and also the first word out of his mouth on the day of my diagnosis:

“Anemia. Well, you have a kind of anemia that is unresponsive to treatment.”

Listening.

“You have refractory anemia.”

Still listening. Snap judgment: doesn’t sound too scary.

“It is very unusual for your age. Refractory anemia is a disorder where your bone marrow does not make enough healthy red blood cells.”

How do we fix it?

“There are treatments to help in managing your symptoms. In your case, you are very healthy otherwise so we will consider that when evaluating the different options. Your prognosis is very good.”

What are the treatments?

“In some cases, if your red cell count gets very low, you may need a blood transfusion.”

A blood transfusion? What else?

“Sarah, refractory anemia is a form of blood cancer. I’m sorry.”

Fuzzy. Why are you talking about cancer? I have anemia.

I was 22 when I was diagnosed with refractory anemia, a type of myelodysplastic syndrome (MDS). My hematologist had never before diagnosed anyone close to my age, so it was a miserable adventure for both of us. He stumbled through the words. I struggled to hear anything he said. I was there alone in his office. The whole world stopped when he said the word “cancer”. My chest hurt and I couldn’t breathe. My ears were ringing. My face was hot, my hands sticky. Nothing moved. Everything was fuzzy.

It’s the same feeling you have when you vomit… when your eyes are watering and you can’t breathe and you’re completely sweaty and shaking, helpless on your knees in front of the toilet… that type of feeling, but internalized. And multiplied.

I survived the moment. It was my first moment as a survivor.
We worked through the details over the rest of the appointment: most people are over 60 when they are diagnosed; of the different classifications of MDS the diagnosis of refractory anemia is among the more favorable; the average life expectancy is 3-5 years but some live much longer than that; there is some risk for progression to acute myeloid leukemia (AML); treatment options range from watch and wait to the possibility of a bone marrow transplant; there may be drug studies that I could participate in; and I can “continue to live a relatively normal life”.

So that’s what I did, returned to my life. We decided that watch and wait would be the best option for me. I had regular blood tests to monitor any changes in blood cell counts, but other than that, nothing in my day-to-day changed. I was still Sarah. A student in college. Friend and sister. Daughter. Girlfriend. Creative, independent and strong…. Strong willed. I determined that anemia, refractory anemia, cancer or whatever, was not going to change my identity. I was still Sarah, but with cancer in my back pocket.

For the first three years after diagnosis, we continued the watch and wait. I stayed relatively healthy – physically, emotionally and spiritually. I worked out at a gym, ran on the treadmill, and walked my dog every day. I also stayed in good condition mentally by sticking with my goals. I finished an MBA, started a career with a consulting firm, and sat on the Board of Directors for a healthcare association. For emotional and spiritual stability I aimed to be well-rounded. I invested in friendships, continued to build relationships and did volunteer work. I even accepted a promotion in San Francisco and relocated for a big city adventure.

My new life in San Francisco was invigorating but extremely challenging. Balance went out the window, and I attribute the decline in my health largely to stress from the move, the new position, moving away from my support system, and getting wrapped up in the speed of the City. My hematocrit level dropped significantly in the months after my relocation and my symptoms of anemia worsened. My ability to participate in any physical activity declined. Everything made me lose my breath. I was dizzy every time I stood up. I stopped running, stopped just about everything. My performance at work went downhill and I struggled to concentrate and make deadlines. Stress skyrocketed.

The watch and wait finally progressed to treatment after three years, when I received my first red cell transfusion. The concept of blood transfusions was not entirely foreign to me: before becoming anemic and being diagnosed I had donated platelets at the local blood bank and was a multi-gallon donor. But this was my first time on the receiving end and it was pretty nerve-racking. To be honest the thought of having someone else’s blood dripping into your veins is nothing short of creepy and made me feel claustrophobic for some reason. Fortunately there is a magnitude of difference in how you feel afterward. I received another transfusion 6 weeks later, and then again 4 weeks after that… Over a 10 month period I received 6 transfusions. My disease had progressed to leukemia.

And then there was chemo. You hear about chemo, read about chemo and you walk into the hospital with an albatross of expectation that it will be among the worst experiences of your life. For me, the expectation was the worst part of day one. On the next day, knowing exactly what to expect was the worst part. You take it one day at a time. You have bad days. You have worse days. You have an “easy” day. Then your worst day. The side effects stack up.

One of the most vivid memories of my entire cancer experience was the day I shaved my head. It was one of the bravest days of my life. My hair was falling out in clumps and I knew it had to go. For a woman, there are not many moments more… frustrating and sickening then staring down at a clump of hair stuck in the shower drain. One day, I climbed out of the shower, and stood alone in front of the mirror. Have you ever looked into your own eyes and had a conversation with yourself about who is in really in control? I did. And then I cut my hair, and shaved my head. My hair was gone in one day. Some would say I lost my hair. No, I cut my hair and took back the reins from cancer. You find strength at just the right moment
Strength… you find strength in family, or in friends who are your family. You find strength in knowledge, by clinging to routine, in living one day at a time, or in looking forward to morning. Some turn inward and dig for strength. I turned upward; faith and prayer were significant to overcoming leukemia. When I lacked strength, I prayed. When I lacked the strength to pray, people prayed for me. In my darkest moments prayer and faith were all I had. Leukemia pushed me to the edge of hope, and that is when faith and God took over and carried me through. People ask if I believe in God: “I have to. He met me in my darkest moment and then He healed me.”

Leukemia gave me more than it ever took away: renewed faith; strength I never knew existed; deeper appreciation for relationships; the ability to find peace in chaos; and awareness of how my mind, spirit and body are all connected. Leukemia even led me to my husband. When I was sick I relocated to Dallas to be closer to my sister, Jennifer. Dallas was never on my radar – until I needed my sister. I left everything in California except for two suitcases and a cowboy hat, which I thought would come in handy in Texas. I had been in remission for less than six months when I met my husband, Brian, a native Texan. We got married in the same year and now live in Houston with two big silly labradors. We also started a real estate company and get to work with a great team of people and friends. I am now three years and nine months in remission. Every day is a new day to be grateful.

What does it mean to be a survivor? It means you wake up one day and your future looks differently than it did the day before. You determine not to lose yourself in the process. You fight for life, for your health… and for your identity. Cancer is part of your story, but it is not your whole story. You are a survivor every moment that cancer doesn’t quench your spirit, invade your soul or hijack your sense of purpose. This is ‘survivor’.

I am a survivor.

This entry was posted on Tuesday, December 8th, 2009 at 7:12 pm and is filed under written word and tagged with Blood Cancer, Cancer, MDS, myelodysplastic syndrome, Refractory Anemia, Sarah Jones, Survivorship.