Tuesday, October 13, 2009

Upside Down

An added waiting room this visit to shake things up a bit. We headed over to the West tower this time to valet our car (the same side we would go in and out several times a day when he was an inpatient). Yousuf was scheduled for an ECHO -a sonogram of the heart. One of the medications, in the next phase, could cause problems with the heart so he will be getting more ECHOS in the near future. They wanted to make sure everything was okay before starting the medication.

After about an hour getting the ECHO we headed over to the other building for our usual routine. The lab was running an hour behind schedule so our wait was longer. In the infusion room Yousuf was getting a bit cranky, he kept forgetting about being hooked up to the chemo machine. He would walk away and get yanked back like a dog on a leash. A loud yelp with a flood of tears, he would walk back to his base. They have been increasing his chemo every 10 days but this time he began to cry from the drugs leaving a bad taste in his mouth...literally.

I hope the next 16 days goes extremely slow because after that we will begin the delayed intensification phase. The doctor was going over the phase, mentioning a few new drugs he will take, a double in the steroids from the induction phase, and how we will have a home nurse come out and show us how to administer one of the drugs three days out of the week with the needle left in his port-o-cath. She was provoking tears and knot in my chest as she carried on with her traditional speech. I just tried to say to myself that she doesn't know that much. Where is Dr. Margolin or Dr. Stevens, his real doctors? I don't like these assistant doctors coming along acting like they know whats going on. Dr. Stevens and Dr. Margolin have seen yousuf since day one. They could reassure me by saying something like, "Oh but don't worry it will never be like the first day" or "He won't get that bad again as he once was". I just have to trust this new face...well not exactly new. We have seen her a few times this phase. I still want to hear "The Boss" doctor's opinion. I asked my questions and got the obvious answers that yes he will be double as hungry and double as grouchy as he was before. No more outings and a closer monitoring again. "Just eight weeks of this and it will get easier." I kept telling myself.

I've been a bit spoiled with the ability to go out a bit more. With his counts looking good this month I have been more relaxed and carefree. In 16 days 'CAREfree' will become 'CAREful' once again. The first upside will soon be downside up again...

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