Fourth Progression
14 months. That is all Xeloda could give me. Not very giving, if you ask me.
But back a few weeks. I had a pain in my shoulder, like a pinched nerve but not. I didn't think I had strained it doing anything, but the pain just stayed. And stayed. And then it got worse.
At my next doctor's appointment, my blood markers were up– again! Dr. C was clear. It was time for scans. And she wanted to add a MRI to the mix this time. And they were going to look at the brain stem. UGH.
Well, I wouldn't have reactivated this blog if the results had been good. More tumors in new places of my spine. No brain tumors but the top of my spine is now affected. And my ribs, also worse. Oh, and that pesky T3 which is probably why my shoulder was in such pain.
Dr. C reviewed the trials, which haven't changed much since we last reviewed them, and feels that none of them are appropriate. Nope, she wants [and will get] IV weekly taxol. I have no more veins. They are shot to hell after 12 years of chemo, scans, and blood draws. I need a port.
So, on March 14th, we woke at 4AM to head to the hospital. A snow storm was starting but hospitals don't close. My pre-op nurse was a guy named Stu, who usually works ICU. When he appeared on the floor, everyone called out "Stu." It was like a really, early morning "Cheers." My surgeon was a PA, and my anesthesiologist was a RN. They were both female. The PA, like so many young women of the millennial group, had the voice of a 12-year old girl. [Can someone explain this self-infantilization among well educated women?] It was hard to concentrate on the information she was giving me. The voice! Anyhow, she was over-riding the orders she had. Someone had said a medium double port, and she took one look at me and said "single, smallest size I have." We discussed placement. We discussed infections. Then it was the RN's turn, and we discussed nausea and vomiting and twilight vs fully under. And then they rolled me into the room. There were x-rays and then I was sent under. At some point I chattered "ah, you are pushing the catheter now" and the RN chirped back "I will give her some more juice!" They did bring me back up for the ultrasound since I had to hold my breath. They kept praising me for doing well. I finally said "I am so pleased that my years of studying for this moment is serving me well. YOU are the people who should be praised for doing well." They just laughed and sent me back under.
They nailed it. The port is right where I wanted it to be. I had no nausea from being under. I was home by noon. And then the snow got really serious.
Forward another week and once again we are up before the sun to get to Dana Farber at 7:30AM. Once again, start on the 2nd floor for blood draws, but of course, this time it was different. I now have a port. Oh she was so kind. She carefully explained exactly what she would do. She was disappointed that I didn't have a RX for the numbing cream. After she got what she needed, she left all the wires and tubes attached securing them with yet more bandages. I was free to head to the 9th floor.
Dr. C and my husband have never met. There was no reason to involve him for the past 5 years. I was able to drive myself, and there was no reason for him to waste a day of his month sitting in a hospital waiting room. IV infusions mean auxiliary drugs. You can not drive yourself home. He had to be with me, and it was time for him to meet Dr. C. She didn't talk to him. She still talked to me. Perhaps she was a bit stiffer than usual. Or maybe she was stiffer because this was a big thing she was telling me to do.
We rechecked in at the desk and waited for the infusion nurse to appear.
I was taken to the corner office. The view! Amazing. I suspect that this room is for newbies to bring them back. I will never see that room again! I don't think I will replay the whole time. There was an allergic reaction. Charge nurses were involved. Dr. C arrived. More benadryl was administered. The taxol was slowed down and an hour and half later, they let me go.
At home, I crawled into bed and slept. Benadryl will do that to you.
And today? Not bad at all. A bit steroid driven, but not crazy like back in 2005. I made some bread and cookies, but didn't eat them particularly. I am not starved. I am not jumping out of my skin. It is okay.
Cautiously optimistic. May this taxol stuff actually work!
But back a few weeks. I had a pain in my shoulder, like a pinched nerve but not. I didn't think I had strained it doing anything, but the pain just stayed. And stayed. And then it got worse.
At my next doctor's appointment, my blood markers were up– again! Dr. C was clear. It was time for scans. And she wanted to add a MRI to the mix this time. And they were going to look at the brain stem. UGH.
Well, I wouldn't have reactivated this blog if the results had been good. More tumors in new places of my spine. No brain tumors but the top of my spine is now affected. And my ribs, also worse. Oh, and that pesky T3 which is probably why my shoulder was in such pain.
Dr. C reviewed the trials, which haven't changed much since we last reviewed them, and feels that none of them are appropriate. Nope, she wants [and will get] IV weekly taxol. I have no more veins. They are shot to hell after 12 years of chemo, scans, and blood draws. I need a port.
So, on March 14th, we woke at 4AM to head to the hospital. A snow storm was starting but hospitals don't close. My pre-op nurse was a guy named Stu, who usually works ICU. When he appeared on the floor, everyone called out "Stu." It was like a really, early morning "Cheers." My surgeon was a PA, and my anesthesiologist was a RN. They were both female. The PA, like so many young women of the millennial group, had the voice of a 12-year old girl. [Can someone explain this self-infantilization among well educated women?] It was hard to concentrate on the information she was giving me. The voice! Anyhow, she was over-riding the orders she had. Someone had said a medium double port, and she took one look at me and said "single, smallest size I have." We discussed placement. We discussed infections. Then it was the RN's turn, and we discussed nausea and vomiting and twilight vs fully under. And then they rolled me into the room. There were x-rays and then I was sent under. At some point I chattered "ah, you are pushing the catheter now" and the RN chirped back "I will give her some more juice!" They did bring me back up for the ultrasound since I had to hold my breath. They kept praising me for doing well. I finally said "I am so pleased that my years of studying for this moment is serving me well. YOU are the people who should be praised for doing well." They just laughed and sent me back under.
They nailed it. The port is right where I wanted it to be. I had no nausea from being under. I was home by noon. And then the snow got really serious.
Forward another week and once again we are up before the sun to get to Dana Farber at 7:30AM. Once again, start on the 2nd floor for blood draws, but of course, this time it was different. I now have a port. Oh she was so kind. She carefully explained exactly what she would do. She was disappointed that I didn't have a RX for the numbing cream. After she got what she needed, she left all the wires and tubes attached securing them with yet more bandages. I was free to head to the 9th floor.
Dr. C and my husband have never met. There was no reason to involve him for the past 5 years. I was able to drive myself, and there was no reason for him to waste a day of his month sitting in a hospital waiting room. IV infusions mean auxiliary drugs. You can not drive yourself home. He had to be with me, and it was time for him to meet Dr. C. She didn't talk to him. She still talked to me. Perhaps she was a bit stiffer than usual. Or maybe she was stiffer because this was a big thing she was telling me to do.
We rechecked in at the desk and waited for the infusion nurse to appear.
I was taken to the corner office. The view! Amazing. I suspect that this room is for newbies to bring them back. I will never see that room again! I don't think I will replay the whole time. There was an allergic reaction. Charge nurses were involved. Dr. C arrived. More benadryl was administered. The taxol was slowed down and an hour and half later, they let me go.
At home, I crawled into bed and slept. Benadryl will do that to you.
And today? Not bad at all. A bit steroid driven, but not crazy like back in 2005. I made some bread and cookies, but didn't eat them particularly. I am not starved. I am not jumping out of my skin. It is okay.
Cautiously optimistic. May this taxol stuff actually work!
posted by *susan* at
10:26 PM
1 Comments:
Following now, friend. I completely agree about young education women's voices. Although I think there may be an improvement: they no longer have to explain "I'm a doctor" or "I'm a PA."
Gretchen
By
The Green Cedar, at 4:08 PM
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