After 35 days in the hospital I was finally discharged. The bone marrow took that long to wake up, and in fact hadn’t really awakened at all. But the doctor determined that enough signs were there to indicate that a “wake up” was happening soon and he felt that I needed to be home for at least a few days before going back in for my stem cell transplant. So he cut me loose, despite my neutraphyls being just .08 and white blood cells at .04. My hemoglobins were at 78 and because I was being sent home he gave me a blood transfusion (normally we get these if hemoglobin gets below 75).

Continue reading “Discharged (Part 1)” →

Day 1 is considered the first day that I get chemo. So they don’t count the first two days I was here. Today is Day 20.

Continue reading “Infection” →

One thing I’ve learned about chemotherapy is that your situation can change in an awful hurry. And then change again. My last day of chemo was July 19, precisely two months after receiving my official diagnosis of Myelodysplastic Syndrome (MDS). On Thursday, July 20 I felt good enough to eat most of a Big Mac combo for lunch. And I held it down. I still felt full, almost bloated, at 6:30pm but wanted to eat a half of an egg salad sandwich. I took a few bites, then vomited.

Continue reading “Chemo: rising and falling” →

On Thursday, July 13, my parents brought me to Princess Margaret Hospital for what I figure will be close to 30 days – though I would try to cut it to 23.

Continue reading “Induction therapy (chemo)” →

Today, I feel despair. Hope took a beating. And finding the motivation to pick myself up off the mat is difficult to say the least.

Let me get you up to speed.

Continue reading “Feeling Despair” →

I finished Round 1 of chemo last Saturday. After four sets of shots in my stomach, they did a set in my leg on the Friday. The nurse looked at my arm, but didn’t see enough fat there (woo hoo!). But the leg was a mistake – the bruising still hurts there eight days later. On Saturday, the other nurse found another spot on my belly for the three shots.

Continue reading “Finished Round 1” →

Chemo began this week. So far it’s been fine – three needles filled with azacitidine to the belly Monday. Three more on Tuesday just below the first three. Each needle takes less than 30 seconds. Once I arrived at PMH and check in, they pull the azacitidine out of the freezer and prepare it. It takes about an hour to prepare, so we wait in the waiting room for about 90 minutes before getting called. Then I go in and get the three needles. Each time I’m there, the nurse is very friendly and answers questions patiently. She grabs a nurse practitioner or a pharmacist to answer my other questions. Between Friday’s blood check appointment and the Monday and Tuesday appointments, I bet I spent a good 90 minutes just having questions patiently answered.

Continue reading “Chemo” →

On Tuesday June 6 my wife and I were sat down by the doctor and it was explained to us that my blast count was at 15% and that I was designated “high risk”. I would most certainly need a stem cell transplant and that chemo would need to start almost immediately. They scheduled it for June 12.

Continue reading “I was diagnosed with Myelodysplastic Syndrome Part 2” →

It has been several days since I got the phone call. I knew it wouldn’t be good, but hoped it would be better. Dr. Crump, my doctor at PMH, specializes in lymphoma, but two-and-a-half years ago had ruled out lymphoma. He called me personally on Friday evening before the long weekend. I was with my kids. My eight-year-old daughter, Avery, answered the phone.

Continue reading “I was diagnosed with Myelodysplastic Syndrome” →