What my day is like
John (as dictated to Anna): Good evening. Let me give you some sense of what my day has been like this past week. On Saturday, Sunday, and Monday, we spent days and early evenings at Seton Hospital, first going to admissions, presenting insurance ID and filling out forms, being assigned a room upstairs, and going up to the 7th floor to my room—a different room each time, getting vital signs taken, blood drawn, and getting weighed. Infusion medicine would then be ordered; then we would wait a long time. Then pre-meds--benedryl and saline solution--were administered by IV; finally, the main event—ampisome, a complex and sometimes difficult compound, was administered over a 2-3 hour period, and then I was free to go.
Anna: On Tuesday, Wednesday, and today, a step was added—going to Dr. Tucker’s office first--to receive the blood tests, get results and orders for infusion. While requiring a trip to a different building and starting earlier in the day, this approach actually saves time!! Thanks to Micci and Dr. Tucker, John can now arrive at the hospital with the orders in his hot little hand, thus eliminating hours for faxes to make the round trip between hospital and doctor. A variation for today was that Seton had no rooms in their central hospital near our house, so a third trip was added—going to the NW satellite location of the hospital—thus adding 90 minutes to the round trip (Thanks Diana!)
John:Accomplishing all of this has involved a cast of thousands, including, in sequential order of hospital trips this week: Mason Carroll, Brianne LaBauve, Jay Byrd, Larkin Tom, Janis Bergman-Carton, Evan Carton, Chuck and Marcella Rossman, Sharron Rush, Ron Hicks, Annie Hudson, Vicki Almstrum, Amanda Winters, and Diana Seidel. Our heartfelt thanks go out to all of them, and to those who have offered to help with these trips in the future. These treatments are scheduled to go on for 3 weeks. After much ado, Dr. Tucker’s office has been certified to give ambisome starting next Monday and this will remove a lot of the bureaucracy and wait time, so the process will be simpler. (Note from Anna: For Austinites who've asked to help with John's treatments and healing process, Sharron Rush has set up a Google calendar with this link: http://tinyurl.com/2kjjbc . Thanks Sharron for helping to organize us! You guys can also call 512-431-6619 if you'd like to help with rides, food, or visiting.)
It feels good to be in Austin and not be having brain surgery. I feel a little better, and I think some of the mist in which my brain has been shrouded has begun to lift a little. But even if it’s just a little, it feels good--it feels like I’m beginning to get my self back. I think Anna appreciates that too. Thanks, Anna, for all of your love and support.
Anna: I am encouraged by John’s progress--His voice is clearer and movement a bit steadier. If I sound reserved, I'm trying to remain calm and objective about what I am observing and restrain any exuberance that is waiting to express itself:)
John: And of course there’s Dillon. What more can I say? He doesn’t know that he has cancer, though he sleeps a lot. Anna and I cuddled with him when we got back from dinner. He was lying peacefully on the green futon sofa. He’s such a lovely dog.
Lots of love and hugs, John and Anna
Anna: On Tuesday, Wednesday, and today, a step was added—going to Dr. Tucker’s office first--to receive the blood tests, get results and orders for infusion. While requiring a trip to a different building and starting earlier in the day, this approach actually saves time!! Thanks to Micci and Dr. Tucker, John can now arrive at the hospital with the orders in his hot little hand, thus eliminating hours for faxes to make the round trip between hospital and doctor. A variation for today was that Seton had no rooms in their central hospital near our house, so a third trip was added—going to the NW satellite location of the hospital—thus adding 90 minutes to the round trip (Thanks Diana!)
John:Accomplishing all of this has involved a cast of thousands, including, in sequential order of hospital trips this week: Mason Carroll, Brianne LaBauve, Jay Byrd, Larkin Tom, Janis Bergman-Carton, Evan Carton, Chuck and Marcella Rossman, Sharron Rush, Ron Hicks, Annie Hudson, Vicki Almstrum, Amanda Winters, and Diana Seidel. Our heartfelt thanks go out to all of them, and to those who have offered to help with these trips in the future. These treatments are scheduled to go on for 3 weeks. After much ado, Dr. Tucker’s office has been certified to give ambisome starting next Monday and this will remove a lot of the bureaucracy and wait time, so the process will be simpler. (Note from Anna: For Austinites who've asked to help with John's treatments and healing process, Sharron Rush has set up a Google calendar with this link: http://tinyurl.com/2kjjbc . Thanks Sharron for helping to organize us! You guys can also call 512-431-6619 if you'd like to help with rides, food, or visiting.)
It feels good to be in Austin and not be having brain surgery. I feel a little better, and I think some of the mist in which my brain has been shrouded has begun to lift a little. But even if it’s just a little, it feels good--it feels like I’m beginning to get my self back. I think Anna appreciates that too. Thanks, Anna, for all of your love and support.
Anna: I am encouraged by John’s progress--His voice is clearer and movement a bit steadier. If I sound reserved, I'm trying to remain calm and objective about what I am observing and restrain any exuberance that is waiting to express itself:)
John: And of course there’s Dillon. What more can I say? He doesn’t know that he has cancer, though he sleeps a lot. Anna and I cuddled with him when we got back from dinner. He was lying peacefully on the green futon sofa. He’s such a lovely dog.
Lots of love and hugs, John and Anna
posted by anna at 9:43 PM
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