When we returned from Disney and the horrible heat, we needed a vacation from our vacation! I was so happy though that the boys had a great time. For their ages, six and four, they were pretty wise to the situation at hand. Wise beyond their years from watching their Daddy go through so much pain and trips to the hospital, emergency rooms, etc. Sad to say, but they were used to it.
I knew it wouldn’t be long until I would need to be back in the ER or an extended hospital stay. I was losing so much weight because of the awful sores that were overwhelming the insides of my mouth. Every piece of food felt like sharp shards of glass eviscerating the linings of my cheeks. Pusy, bloody, beyond painful, the mouth washes and antidotes meant to ease the pain were useless. Even drinking fluids was a nightmare. I was dehydrated, sullen and falling apart. My body was in a state of perpetual Interferon flu. Headaches, stomach upset, hair falling out and terrible diarrhea. I lasted about three more days until I actually collapsed and was rushed to the ER in a state of delirium and intense pain. I needed IV fluids right away along with painkillers for my mouth and head. After I was stabilized they had to transfer me from Abington hospital to my homebase Hanahmen. Dr. Dave couldn’t wait to see me. I was a freaking mess.
It was time for a very serious conversation. The Interferon was not working for me. Rather than help me it was hurting me. There was no sign of change in my disease status and my white cell counts were out of control. Approaching 200k the CBC hit a new record for me. Another Bone Marrow aspiration was scheduled immediately to check the Blast situation. We were getting so close to the end of the line. I asked Dr. Dave in a very emotional state,”Am I going to Die?” He looked at me, staring at me and processing my question. He put his hands on my shoulders, looked me in the eye, and said..”I Promise, I Am Not Going To Let You Die…You Have My Word”. This was some serious shit. No big smile, no uppity attitude and no bullshit. Serious, sincere and heart felt. It was really what I needed to hear. He gave me some strong stuff so I could sleep. Tomorrow was a big day.
I was being fed through a tube at this point while loads of antibiotics were being administered to fight the Thrush and sores in my mouth and get me stronger. My morning doctor visit was amazing! Nick and Joe came in dressed in caps, gowns and masks, announcing themselves as my doctors for the day. I really needed that. I hated for them to see me like the state I was in but sadly they were used to it. They were there to make me better. They did a wonderful job. It took me over a week to get myself in shape to go home. Still injecting Interferon, still waiting for the Golden Ticket, still full of hope. I knew how bad the situation was. I’d seen the downward spiral of Leukemia patients in their last few months. It was a horrible scene. Would this new drug save me? Please, please, please… I can’t take much more.
Next Up: Great News!