My CML Journey – Diagnosis Day

May 18, 2008

in Health

I had planned to do a single post about CML and my experiences with the disease. However, I think writing about it has been somewhat cathartic for me and I have ended up with much more than I’d anticipated. So today is the first part of my story – diagnosis day. The next part will be a background of the disease and a little about my experiences over the last two years.

Just over two years ago (February 2005) I was enjoying a coffee in our backyard with my husband. The kids were playing happily around us. It was a gorgeous autumn day – clear and mild, with that sense of crispness in the air. I don’t remember what we were talking about, but I can remember thinking to myself, “Life is really good now. I couldn’t ask for anything to be better”.

Two weeks later, one night in bed, I snuggled down under the doona and rolled over onto my stomach. I felt a lump just under my ribs on the left side. I thought it was strange, but then drifted off to sleep and forgot about it. The next night the same thing happened again. This time I remembered the lump the next morning. I checked it when I had a shower. There was definitely something there, about the size of a golf ball, not really sticking out but visible just beneath my ribs. It didn’t seem like something that was going to just go away, so I called my GP and made an appointment.

It was a long weekend and I had to wait until the following Tuesday for my doctor’s appointment. I racked my brain trying to think of what this lump could be. The whole family had suffered through a bout of gastro about a month earlier – perhaps it was a hernia? It got the better of me and I Googled “mass on left side of abdomen”. Things started to get a little bit scary. I learnt that my lump could in fact be due a hernia (but not likely given where it was). It could be due to a harmless virus that had caused my spleen to enlarge temporarily. Then there were words like leukaemia and stomach cancer. I didn’t read too much more.

I tried to put my Google diagnosis out of my mind over the rest of the weekend. I had done a pretty good job convincing myself it was probably a virus. In the meantime, my lump was getting bigger each day.

Tuesday came and so did my appointment with the GP. She felt my stomach, noting there was definitely something there. She thought it was probably my spleen, but it was so big that it was difficult to know for sure. She asked me some questions about headaches, night sweats and energy levels then sent me off to another room for a blood test while she organised a scan for the next day to confirm that it was my spleen that was involved. I left the doctor still trying to convince myself that it was a virus.

Wednesday morning I spent my time window shopping. When I got home there was a message from the doctor and two messages from my husband on the answering machine. Trouble. The doctor had been trying to reach me and had even called my husband to see if he could track me down. I started to cry. The doctor doesn’t chase you around unless there is something really wrong. The leukaemia and stomach cancer scenarios raised their heads again.

In the waiting room at the doctor I sat quietly, contemplating what was going to be said. Then my name was called. The doctor was pleasant and asked how I was feeling. “OK”, I said. Then she went on. The blood test I had the day before confirmed that the lump was my spleen and that my white blood cells were very elevated. My head began to spin. “So it’s leukaemia,” I said. “Yes, it’s a type of leukaemia”, came the reply. A type of leukaemia? What does that mean? I didn’t know there were types of leukaemia. All I knew was that people died when they got leukaemia.

The room began to spin. I felt like I was in a dream. I had so many questions but at the same time I didn’t know what to ask. “Do I still need to have the scan today?” It was all I could say. The doctor went on to explain that she had arranged an appointment for me at the local cancer centre for the following day. She made sure I had someone to meet me when I arrived home (I had called my husband in tears on the way to the doctor to ask him to come home).

I kept repeating “I can’t believe it!” How did this happen? I was young, reasonably fit and healthy. I was raising my three young children – still breastfeeding my 10 month old daughter. It was all so unreal. My husband arrived as I was getting into the car after my appointment. I think one look at me would have told him something was seriously wrong. “It’s leukaemia,” I whispered. He held me and we cried. I’m not sure how long we sat in the carpark.

Eventually I composed myself and told him what had happened at my appointment. My head wouldn’t stop spinning. I couldn’t think clearly. We went home and tried to make sense of things a little before we picked up the kids from my friends house.

God, the kids. Every time I looked at them, the tears came again. I wasn’t afraid of dying, but the thought of leaving the kids tore at my being. I couldn’t bear it. At the same time, taking care of the kids took my mind off things. They still got hungry and tired and wanted to play, despite how my husband and I were feeling.

We shed a great many of tears that day. A lot of the day, after my appointment, is a blur but I can remember the tears. My friend told me it would be a few days before my head stopped spinning. I didn’t think it would ever stop.

Surprisingly, I slept well that night. I don’t know how! My life had been turned upside down. I didn’t know if I would live or for how long. I thought at the very least I would be having intensive chemo. Despite the questions that were beginning to come, I was too afraid to seek answers. My biggest concern was for the kids though. And my dear husband. I think he cried more than I did.

And so my new journey had begun. I didn’t know how long it would be or where it would take me. I was an unwilling traveler, but there would be no going back.

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