Robin Update: Initiation into MD Anderson --- 07-05-2010
NOTE: You might have missed the June 8th update (Since I failed to publish it until now), so please take a look. It includes a picture of Robin's anniversary present, earned from 34 years of living with Larry.
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I apologize (again) for not communicating sooner. I had several folks asking me to provide a picture of Robin, and so I kept waiting for an opportunity when she was dressed and had on makeup so I could take the picture. Generally, this meant once a week, after church. Unfortunately, once we get in the door, it's straight to the bathroom, and out of the nice clothes. THEN I remember that we need a picture. Finally, on July 4th, I remembered BEFORE she changed clothes!
Since the last blog entry in June, the biggest major event has been Robin's admission into the M.D.Anderson Cancer Center. This was a significant accomplishment, taking almost two months to get everything together and sent to them. They wouldn't even schedule an appointment until they had everything in hand.
When Robin started the process, the intake manager only told her that they needed "everything." "Everything" is an incredible amount of data. Just since cancer was diagnosed, her file at Deke Slayton cancer center is 8" - 10" thick. In addition to those records, she has records from her PCP, three hospitals, her surgeon, endocrinologist, neurosurgeon, thoracic surgeon, and allergist. Each of them has forms to complete, and you must show personal identification to get the data transferred, thanks to HIPPA. She also needed a letter of referral from her PCP, which expired before all the materials were transferred, so Robin had to get another referral! Eventually, Robin's oncologist saw what was happening, and she got her nurse to assist. Two weeks later, about mid-June, Robin had an appointment for July 1st.
The night of June 30th, Robin hardly slept at all. She was both nervous and excited about her appointment. When July 1st arrived, Connie got Robin ready while I went to work to attend a meeting. Dottie C. offered to drive us down to Robin's first appointment, since she is very familiar with the Medical Center, in general, and MDAnderson, in particular, because she is a volunteer there. She picked us up and got us there a half hour (or more) before Robin's appointment. Amazingly, it was not that long before they called Robin's name. Instead of seeing a doctor, though, we met with an "intake specialist;" basically, a clerk who checked over the ten page application I filled out the night before. Then Robin had to (electronically) sign a dozen forms regarding patient rights, tissue samples, personal information, insurance, financial responsibility, etc. The whole intake process took almost exactly an hour, finishing at 12:30. That's when we found out that Robin's doctor appointment was at 1:00 PM. Robin was finally called at 1:30, and she was shown to an examination room. Robin's doctor appeared (with intern in tow) about 15 minutes later.
We liked the oncologist who had obviously read (at least SOME of) the materials that Robin spent so much time gathering. He discussed her cancer situation and explained the cancer trial processes a bit and told Robin that he had a phase 1 trial in mind for Robin. The first step is to get a complete set of tests and scans performed. Robin is due anyway because her last scans were done in April. (Hard to believe it has been that long since Robin had Chemo). After these tests, if she is still a candidate for the trial, she will need a DNA test, looking for certain markers. If she "passes" that test, the treatment will be by pill. If she does not pass the DNA test, the doctor would refer Robin to another oncologist with a trial that might fit. In any case, Robin will still get a monthly infusion of Zometa (zoledronic acid) for the protection and repair of her bones. After the doctor finished, he told us to wait in the waiting room to get her tests scheduled.
We waited for a long time before we thought we heard Robin's name called. When we went back, the scheduler was able to set up most of the scans for Tuesday and Wednesday (July 6th and 7th), and a doctor's appointment for July 12th. We got out of there at about 4:30, just in time for rush hour! And then the rain from Alex started (again). Fortunately, Dottie knew a few tricks. Even though she doubted her own sense of direction a couple of times, Dottie got us to Beltway 8 without trouble, and completely avoided the freeway gridlock that we were close enough to witness a few times. Once on Beltway 8, home was just minutes away. Dottie is amazing!
Robin has been taking it easy this weekend. John has been out of town with friends for the long weekend, so I haven't been taking it easy. Robin is still feeling pretty well (due to no chemo for so long). Her pain levels have generally been tolerable (thank goodness for pain meds), but she is concerned about a new pain on her right side. Perhaps the scans will explain this new pain.
Once again, our thanks to everyone who continues to keep Robin in their thoughts and prayers (in spite of the lack of timely updates). Special thanks to Dottie. She continually surprises us with her patience, her energy, and her love. Terry and Ken call Robin fairly regularly, and Pat sends Robin a weekly card. Alexis comes over and reads to Robin at least once week. These and many other less frequent communications help Robin keep in touch with the outside world, and let her know in a real sense that she is loved. Thank you.
Please continue to keep Robin in your prayers. In the last week, Robin's father has been hospitalized, and the doctors are still not sure what is going on. We ask that you keep him in your prayers, as well. We continue to pray for all of you each day, and we thank God for the gift you have been to us.
Once again, thank y'all,
--- Larry, Robin, & John
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I apologize (again) for not communicating sooner. I had several folks asking me to provide a picture of Robin, and so I kept waiting for an opportunity when she was dressed and had on makeup so I could take the picture. Generally, this meant once a week, after church. Unfortunately, once we get in the door, it's straight to the bathroom, and out of the nice clothes. THEN I remember that we need a picture. Finally, on July 4th, I remembered BEFORE she changed clothes!
Since the last blog entry in June, the biggest major event has been Robin's admission into the M.D.Anderson Cancer Center. This was a significant accomplishment, taking almost two months to get everything together and sent to them. They wouldn't even schedule an appointment until they had everything in hand.When Robin started the process, the intake manager only told her that they needed "everything." "Everything" is an incredible amount of data. Just since cancer was diagnosed, her file at Deke Slayton cancer center is 8" - 10" thick. In addition to those records, she has records from her PCP, three hospitals, her surgeon, endocrinologist, neurosurgeon, thoracic surgeon, and allergist. Each of them has forms to complete, and you must show personal identification to get the data transferred, thanks to HIPPA. She also needed a letter of referral from her PCP, which expired before all the materials were transferred, so Robin had to get another referral! Eventually, Robin's oncologist saw what was happening, and she got her nurse to assist. Two weeks later, about mid-June, Robin had an appointment for July 1st.
The night of June 30th, Robin hardly slept at all. She was both nervous and excited about her appointment. When July 1st arrived, Connie got Robin ready while I went to work to attend a meeting. Dottie C. offered to drive us down to Robin's first appointment, since she is very familiar with the Medical Center, in general, and MDAnderson, in particular, because she is a volunteer there. She picked us up and got us there a half hour (or more) before Robin's appointment. Amazingly, it was not that long before they called Robin's name. Instead of seeing a doctor, though, we met with an "intake specialist;" basically, a clerk who checked over the ten page application I filled out the night before. Then Robin had to (electronically) sign a dozen forms regarding patient rights, tissue samples, personal information, insurance, financial responsibility, etc. The whole intake process took almost exactly an hour, finishing at 12:30. That's when we found out that Robin's doctor appointment was at 1:00 PM. Robin was finally called at 1:30, and she was shown to an examination room. Robin's doctor appeared (with intern in tow) about 15 minutes later.
We liked the oncologist who had obviously read (at least SOME of) the materials that Robin spent so much time gathering. He discussed her cancer situation and explained the cancer trial processes a bit and told Robin that he had a phase 1 trial in mind for Robin. The first step is to get a complete set of tests and scans performed. Robin is due anyway because her last scans were done in April. (Hard to believe it has been that long since Robin had Chemo). After these tests, if she is still a candidate for the trial, she will need a DNA test, looking for certain markers. If she "passes" that test, the treatment will be by pill. If she does not pass the DNA test, the doctor would refer Robin to another oncologist with a trial that might fit. In any case, Robin will still get a monthly infusion of Zometa (zoledronic acid) for the protection and repair of her bones. After the doctor finished, he told us to wait in the waiting room to get her tests scheduled.
We waited for a long time before we thought we heard Robin's name called. When we went back, the scheduler was able to set up most of the scans for Tuesday and Wednesday (July 6th and 7th), and a doctor's appointment for July 12th. We got out of there at about 4:30, just in time for rush hour! And then the rain from Alex started (again). Fortunately, Dottie knew a few tricks. Even though she doubted her own sense of direction a couple of times, Dottie got us to Beltway 8 without trouble, and completely avoided the freeway gridlock that we were close enough to witness a few times. Once on Beltway 8, home was just minutes away. Dottie is amazing!
Robin has been taking it easy this weekend. John has been out of town with friends for the long weekend, so I haven't been taking it easy. Robin is still feeling pretty well (due to no chemo for so long). Her pain levels have generally been tolerable (thank goodness for pain meds), but she is concerned about a new pain on her right side. Perhaps the scans will explain this new pain.
Once again, our thanks to everyone who continues to keep Robin in their thoughts and prayers (in spite of the lack of timely updates). Special thanks to Dottie. She continually surprises us with her patience, her energy, and her love. Terry and Ken call Robin fairly regularly, and Pat sends Robin a weekly card. Alexis comes over and reads to Robin at least once week. These and many other less frequent communications help Robin keep in touch with the outside world, and let her know in a real sense that she is loved. Thank you.
Please continue to keep Robin in your prayers. In the last week, Robin's father has been hospitalized, and the doctors are still not sure what is going on. We ask that you keep him in your prayers, as well. We continue to pray for all of you each day, and we thank God for the gift you have been to us.
Once again, thank y'all,
--- Larry, Robin, & John
posted by Larry Burns @ 10:13 PM
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