Ya Just Can't Win....or Maybe You Can
Sorry - been crazy around here! Sometimes when I write I feel like I am writing a serial story. Hmmm - I guess when we are writing about our daily lives, we all are.
Chapter 90 (a nice, round number) - Gerry's BP was still a bit high at home but low in his doctor's office. He was even put onto a water pill (like he NEEDS this? We make "pit" stops all the time - for both of us. I know...TMI). He returned to Houston last Sunday night. On Monday they took his BP and...it was high. They took it 10 times, put him into a quiet room and said, "RELAX!!!" and eventually they got it to the number they were looking for. Gerry was thrilled (and so was I). They were able to take the necessary lab tests and send it off to the pharmaceutical company. The next night he took himself to the Astros game at Minute Maid Stadium (we do like baseball, don't we?). The Astros won, the Yankees won, it was all good! Then came WEDNESDAY!!!! Gerry showed up at 9 AM at the Medical Center for his treatment. The lab tests came back fine. He filled out all the paperwork. Then....he waited!...and waited!...and waited! He called me every two hours, until around 4 PM (and I was at work so it was a little unnerving waiting here while he was waiting there). All day he was told that the pharm. company needed to send over a signature okaying the treatment. We both could not understand why the med. ctr. didn't just call and ask to have the signature faxed over. After sitting for hours, taking a walk, sitting again, Gerry drove back to his hotel to wait. We each made calls to the nurses, he called the dr, and then...we waited. NOW at issue was that Gerry had been on an adjuvant therapy, Interferon, for a year. The pharm. company didn't want him to be part of the clinical trial now. According to the clinical research nurse, prior Interferon treatment WAS allowed. She said that the doctor was working on it. I went to dinner with my mother, and at 7:30 PM my time (it was 6:30 in TX) Gerry called, frustrated, to say that the medical center was closed!! Now what? Should he stay another day (and pay for another day of hotel, car, change in airline flight, and then find out that they will not do the treatment (his flight out was for 10 AM the next day) or leave as planned? We discussed it and decided he would leave. About an hour and a half later Gerry called again...the doctor called him. Gerry said, "If you can tell me that there is a 75% chance that I'll get treatment, I'll stay." The doctor said it was more like a 95% chance, so....! Gerry changed the hotel and car to one more day. I switched the flight. Now that's a WHOLE other ball of wax....so bear with me while I go off on a tangent a bit.....
We book the flights to Houston for the medical center via a special number at Continental Airlines. As a courtesy to patients and family, if you have to change your flight, you don't pay the $100 change fee, only any difference in the cost of the ticket. This time (as it was the last time we did this) it cost $183 more (thank goodness we don't have to pay the additional $100). On-line the ticket price had not changed, but because we are booking with less than a 10 day advance, and it's a different "class" we have to pay. He would still be in ecomony,but the only seats left are "premium" which means you are ELITE STATUS....bigh whoop!!! He gets to go through the ELITE STATUS security line and gets onto the plane first (after First Class, that is). He STILL might be sitting all the way at the back of the plane, by the toilet! So, with no choice, I booked it.
Now to continue...The next day, Thursday, Gerry got the call after breakfast and went back to the medical center. He found out that the criteria for the trial had changed and NOW they were not allowing any patients onto the trial if they had had ANY adjuvant therapy. The doctor fought with them and got Gerry in under the wire...thank goodness! This man would have been devastated if he was turned away. While I know there might be other options, in his view, this was his only hope. FINALLY! Gerry had the treatment, quietly lying in a hospital bed, private room, TV, great treatment. He was there for 6 hours. Next time he can bring loungies or pjs, his computer, and they feed you too. He flew home Friday and looks just fine. I spoke with the nurse who told me that so far the other patients, all male, have only experienced fatigue the fisrt few days after treatment (one didn't have fatigue at all, and the fatigue is not as intense as when Gerry was on Interferon),and all have had hair loss. By the second treatment (3 weeks) they have all shaved their heads - guess it comes out enough to look silly if you don't shave it. None have had nausea, vomiting, loss of appetite or weight. Doesn't sound too terrible, does it? The most important thing for Gerry....he feels as if there is hope! And that's the most important side affect of all!
Chapter 90 (a nice, round number) - Gerry's BP was still a bit high at home but low in his doctor's office. He was even put onto a water pill (like he NEEDS this? We make "pit" stops all the time - for both of us. I know...TMI). He returned to Houston last Sunday night. On Monday they took his BP and...it was high. They took it 10 times, put him into a quiet room and said, "RELAX!!!" and eventually they got it to the number they were looking for. Gerry was thrilled (and so was I). They were able to take the necessary lab tests and send it off to the pharmaceutical company. The next night he took himself to the Astros game at Minute Maid Stadium (we do like baseball, don't we?). The Astros won, the Yankees won, it was all good! Then came WEDNESDAY!!!! Gerry showed up at 9 AM at the Medical Center for his treatment. The lab tests came back fine. He filled out all the paperwork. Then....he waited!...and waited!...and waited! He called me every two hours, until around 4 PM (and I was at work so it was a little unnerving waiting here while he was waiting there). All day he was told that the pharm. company needed to send over a signature okaying the treatment. We both could not understand why the med. ctr. didn't just call and ask to have the signature faxed over. After sitting for hours, taking a walk, sitting again, Gerry drove back to his hotel to wait. We each made calls to the nurses, he called the dr, and then...we waited. NOW at issue was that Gerry had been on an adjuvant therapy, Interferon, for a year. The pharm. company didn't want him to be part of the clinical trial now. According to the clinical research nurse, prior Interferon treatment WAS allowed. She said that the doctor was working on it. I went to dinner with my mother, and at 7:30 PM my time (it was 6:30 in TX) Gerry called, frustrated, to say that the medical center was closed!! Now what? Should he stay another day (and pay for another day of hotel, car, change in airline flight, and then find out that they will not do the treatment (his flight out was for 10 AM the next day) or leave as planned? We discussed it and decided he would leave. About an hour and a half later Gerry called again...the doctor called him. Gerry said, "If you can tell me that there is a 75% chance that I'll get treatment, I'll stay." The doctor said it was more like a 95% chance, so....! Gerry changed the hotel and car to one more day. I switched the flight. Now that's a WHOLE other ball of wax....so bear with me while I go off on a tangent a bit.....
We book the flights to Houston for the medical center via a special number at Continental Airlines. As a courtesy to patients and family, if you have to change your flight, you don't pay the $100 change fee, only any difference in the cost of the ticket. This time (as it was the last time we did this) it cost $183 more (thank goodness we don't have to pay the additional $100). On-line the ticket price had not changed, but because we are booking with less than a 10 day advance, and it's a different "class" we have to pay. He would still be in ecomony,but the only seats left are "premium" which means you are ELITE STATUS....bigh whoop!!! He gets to go through the ELITE STATUS security line and gets onto the plane first (after First Class, that is). He STILL might be sitting all the way at the back of the plane, by the toilet! So, with no choice, I booked it.
Now to continue...The next day, Thursday, Gerry got the call after breakfast and went back to the medical center. He found out that the criteria for the trial had changed and NOW they were not allowing any patients onto the trial if they had had ANY adjuvant therapy. The doctor fought with them and got Gerry in under the wire...thank goodness! This man would have been devastated if he was turned away. While I know there might be other options, in his view, this was his only hope. FINALLY! Gerry had the treatment, quietly lying in a hospital bed, private room, TV, great treatment. He was there for 6 hours. Next time he can bring loungies or pjs, his computer, and they feed you too. He flew home Friday and looks just fine. I spoke with the nurse who told me that so far the other patients, all male, have only experienced fatigue the fisrt few days after treatment (one didn't have fatigue at all, and the fatigue is not as intense as when Gerry was on Interferon),and all have had hair loss. By the second treatment (3 weeks) they have all shaved their heads - guess it comes out enough to look silly if you don't shave it. None have had nausea, vomiting, loss of appetite or weight. Doesn't sound too terrible, does it? The most important thing for Gerry....he feels as if there is hope! And that's the most important side affect of all!
posted by Jody @ 9:49 AM
1 Comments:
At 11:57 AM,
Anonymous said…
I hope this treatment works for Gerry.
What a lot of caca to get the treatment!
Hugs.
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