Important Dates

  • Born: March 16, 1975
  • Diagnosed MFH Sarcoma: December 2008
  • Died: February 23, 2011

Wednesday, September 8, 2010

Day 1 - A Long Day - September 7, 2010

Yesterday was a long day. We were up early and left the hotel about 6:45 AM arriving at the hospital  a few minutes past his 7:30 appointment time, so I dropped him off at the entrance and continued to the parking garage on the next block. As I walked through the doors into the waiting room he was just emerging from the lab area and we were directed to the chemo suite from there.

We were met by D, the chemo nurse who would be taking care of him during his treatments. She told us that she has been working with Dr R and his physician assistant, A, for 12 years and assured us that we were in the best of hands. It was quite evident that she had a tremendous amount of respect for the man and that the work she does is rewarding and fulfilling.

I don't recall the chronology of the events and there was a lot that went on, but I'll try to recount some of the highlights. A was the first to come in to talk with us. She asked asked questions about how Pete was feeling, how much discomfort he was having and talked to us, describing again what these treatments involved.

When D came in she handed both Pete and I two pieces of paper, copies of Pete's blood work from the morning. Several items were underlined, starred or otherwise noted. D proceeded to go through each of them, explaining what the numbers indicated, how they would most likely change during the course of treatment, what the doctor would be looking at and why, each time Pete comes in. She also told us that the white blood cell count would most likely drop to near zero, that another number was extremely critical as it is an indication of dehydration, another indicated liver function, etc.

As D began to prep Pete for the infusion, she explained what she was doing each step of the way. It was not just a cold "these are the facts" lecture, but a vibrant, warm tutalage with ample opportunity for us to ask questions. She included short anecdotes of experiences from the care of other patients, putting both Pete and I more at ease.

One of those stories came on the heels of telling us about the possible side-effects of having hallucinations and strange dreams. She assured us that they were not like those frightening drug or alchohol withdrawals that are portrayed on tv, but rather curious and odd, illustrating it by recounting a story about one patient who commented about the lion that kept passing by the door to his room. The man was a bit perturbed because he said "hello" to the lion each time it passed but the lion just looked in and never responded. He wasn't frightened by the lion, it seemed to be just a curiosity.

Pete was also visited by the pharmacist, L, who brought in an infusion pump. He explained to us how it would be set up, went through a demonstration of changing the batteries and had Pete actually do a hands-on dry run himself. He chatted comfortably with us and we learned that he and his wife have a home in Lavalette, a shore town a bit south of where we live.

O, the nurse/manager of the Complementary Therapy Program, came in briefly to introduce herself, and promised to stop in tomorrow to possibly set up some adjuvent therapy. The nutritionist also came in to speak with Pete but I didn't meet her as I was walking along the Hudson River when she visited.

Dr R stopped in several times during the day. During his last visit he cautioned us that in his experience many patients undergoing this particular treatment experienced a very difficult time somewhere around the fifth day. Once they made it though that low point, though, they began to rebound.

I started this entry around 4:30 AM Wednesday morning and it's now 11. We've been at the hospital since 9, but I haven't been able to finish it up satisfactorily. I'm going to post it now. Lots has happened since we arrived, all of it good, but there have been many disruptions to my train of thought. I'll add more later.

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