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August 10, 2006 DAY #1


We really started on our Marathon again today. At 6:45pm I started ChemoTherapy. But a lot has happened in the last two days, so let me start at the beginning.

Menchie and I really appreciate the outpouring of offers for help and the support. Regardless of the form that support that takes, it really helps. One of the most common questions we get is a request for what can be done to help. Right now, there is a real problem that we need help with. This morning, I needed platelets. There were none in Southern California. Some got shipped in from somewhere, but were diverted to someone with a more critical need. What can you do for me? Go to your local blood bank and donate platelets. The need is critical. Don't worry about the type. Every drop will help.

Yesterday after breakfast I got taken off the BRAT diet and put on a bland, Neutropenic, low residue, low fiber, no dairy diet. It is a huge improvement. The neutropenic limits me to cooked fruits and vegatables. Raw fruits have too many bacteria on them for me to eat safely. Anyway, the meals have been a huge improvement. The dietician has been great helping me pick things I can eat.

We did lots of business yesterday setting up disability and tying up work related stuff.

There was also a huge amount of confusion here at the hospital about what I was supposed to be doing. First it was get up and walk around, take a shower, be as mobile as I want, then it became no don't get out of bed unless you absolutely have to. Even the doctors and nurses were confused. Bottom line became for me to stay in bed at all times if possible, because there is danger that my central line could kink and break my femoral vein, allowing me to bleed to death in a few seconds.

Today, after a rough night due to coughing, I had a glorious breakfast of oatmeal, syrup and applesauce on the side. Then we got signed up for dialup access with COX and got my computer set up so I had internet access here in my bed. They wanted to put in a new central line in my arm, but couldn't because of the lack of platelets. The central line in the arm eliminates the danger of bleeding to death, and gives me my mobility back, so it is a fairly high priority for me. I had lots of visitors this afternoon, and that went well. My father is visiting from the Chicago area.

Some other questions that people keep asking about - I am at Scripps Green Hospital in the Bone Marrow Transplant Unit. I expect I will be here for the duration of my treatment. I do not expect to transfer to City of Hope this time. Visitors are welcome just about any time, but call first to the BMTU to ensure I am not busy with some procedure or sleeping. Visitors must be over 12 years of age. No flowers or fruit. No colds or sore throats. You must wash your hands before entering the room, and you may be asked to wear a mask.

On the medical front: My chemo started at 6:45 with Idarubicin, which is administered by hand over about 15 minutes. This is repeated for the seven days that I am getting ARA-C. Then they started the ARA-C which is given continuously for 24 hours a day for 7 days. Idarubicin has to be treated with great care since it is very caustic and can cause skin problems. I can't go out onto the carpeting with the ARA-C, because if it should leak, it becomes a HAZMAT problem.

I hope everyone has a great Friday!


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