History #11 – induction – first hospitalization – discharge into “crazy backwards nonsensical land”

February 14, 2007 at 5:39 am | Posted in chemo side effects, chemotherapy, Diagnosis and treatment history, My initial treatment -- induction, Sam Cantin, Stanford Hospital | Leave a comment

Having spent the holidays 2001 in the hospital, having lines inserted, beginning chemotherapy and ATRA, coming to grips with all the physical and emotional changes, the first few days of 2002 were seemingly uneventful.

The biggest change was the beginning of the effects of the chemo that were promised. Remember the caution about mouth sores, and the mouth-cleaning regimen I started several times a day? The mouth sores did come. I can’t remember exactly what they were or what they looked like, but I do remember having a sore throat, and ulcer-like lesions in the mouth. At this stage I didn’t get nauseous or have other gastric problems, but I do recall wanting softer food as time went on, and it becoming more difficult to speak.

You’d think that with the onset of some of the side effects of the chemo and the potential for infection that you’d stay in the hospital. However, after a few days into the New Year my doctors informed me that I was to be discharged. I would get antibiotics on an outpatient basis in the hematology clinic. If you think I got an earful about being careful about anything that could cause infections while in the hospital, just wait. I got a huge 3-inch thick 3-ring binder on anything and everything that can cause infections at home, and things to stay away from. Among them included:

Houseplants and gardening. The dirt has bugs.

  • Fresh food of any kind. Anything not processed, canned, pasteurized, or otherwise denuded has bugs.
  • Outside air. Anytime I was to go outside I was to wear a mask with a HEPA filter, which supposedly filters out most of the bugs. It was encouraged to mostly stay indoors with the indoor bugs rather than the outdoor bugs. Besides, wearing it made me look like those guys who clean up after industrial spills.
  • The kitty litter. That too has bugs. (That one wasn’t that bad for me, but was for Sam. We had 3 cats at the time, so you can imagine the amount of work for him from that.)

There were many, many more restrictions than that. But the entirety was intimidating and overwhelming.

Prior to discharge, the staff went over these restrictions with me. While I was home, I was told to be ever vigilant for signs of infection, and take my temperature several times a day. If I did have a fever or otherwise seem to be at the early stages of an infection, I was to IMMEDIATELY call the Hematology Fellow on call so I could be readmitted for emergency antibiotics. Remember, the whole purpose of chemo is to kill fast growing cells, which include white blood cells. So after a week or so of chemo my white count was in the negative range.

I had no way to fight infections. Yet, I was going home to a place apparently filled with bugs that would give me infections. And if I got an infection, I could die immediately. And I was 30 minutes away from the hospital if any one or all of those bugs gave me a nasty life-threatening infection.

While hearing all this and taking it in, I asked, “Wouldn’t it be better to just stay in the hospital rather than go home?”

The doctor told me, “Oh no, you’re much more likely to get an infection in the hospital. Home is safer.”

Home is a place I could die within a few hours of most everything, and it’s safer than the hospital?

This is the crazy backwards nonsensical-land leukemia patients find themselves.

 

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