Radiation, Updates, and Future Appointments
As anticipated, last week was long and tiring. I was already pretty low on energy; and going to the city nearly every day was exhausting--especially while I was trying to get some work done before school starts. Chris began coaching as well, so I was going in on my own.
I had the GI appointment on Monday. It was a quick and easy consult confirming that I will have a colonoscopy in early October. Super.
Radiation went just fine. We seem to have beginners no-luck because, similar to my first infusion, at my first treatment appointment they were running far behind schedule. Although, unlike the infusion center, someone came out about a half hour after my scheduled appointment, told us that they were running late, and then got us a meal voucher AND gave us an estimated time! While the wait was long and annoying, we felt cared-for. Radiation itself was quick and painless--just uncomfortable holding positions for a long time. The staff at the radiation center are cheerful and kind--and overall it was as pleasant an experience as one could expect for given the event itself.
The only hiccup was that they frustrated me by changing the schedule frequently. No big deal, they called and I was flexible. BUT THEN, when I was leaving they said "OK, see you Thursday!" and I said, "No, I am here everyday. I will see you Wednesday." They checked the schedule. It was changed AGAIN to have me have three larger doses rather than five smaller ones. Generally, I would be thrilled that I have two fewer days at the hospital, but Jamie was driving HOURS at that moment to come and spend the night for this appointment. We have been flexible all summer with appointment times and scheduling; however, now that Chris and I have work obligations, I am asking favors of friends. Being at the whim of the hospital is grating.
I called Jamie who was about 40 minutes from her home. She was, of course, kind and sweet and gracious and understanding. I just wish we didn't need to layer frustration on top of everything else.
Symptom-wise, this week and last week have been marked by fatigue, reflux, and mouth pain. All are typical of my treatment and I just need to manage it. Right now, I am managing it with a super-gross mouthwash that numbs my whole mouth (like that post-dental work feel...) and a diet primarily of bananas.
Today, we met with Dr. Drake. I asked him to clarify about the tumor situation-- is there one or two? What about the thing on my lower-back/hip area--the bump that brought me to the MRI in the first place--is that part of it or not? Last appointment, these things were unclear. Apparently, from the scans we had recently, it appeared there was some tumor growth (expected), but it was hard to say if it was more of the same, or a new tumor. The bump on my hip is also still a question mark, and the answer is that we are getting another set of scans. Of course.
I also asked the question everyone asks me: "How long is this nonsense going to go on?" He said that it is much too early to tell, and we would need more scans and time to really answer that. I expected that answer. He was willing to add that the median treatment length is two years, so that is somewhat better than his previous vague answer of "some are on it for the rest of their lives."
Today, we also went to the infusion center and had round 3. We only waited about an hour, which was fine. It was still cold and crowded, but we noticed that they had put out some sandwiches that were snapped up quickly, and I advocated to turn off the war program on the TV to anything more cheerful.
We got home around midday and I tired to do a bit of work, but fell asleep for a few hours instead.
Looking forward, I have a little break coming up for the first week of school: one whole week with no appointments! YAY!
If you want a chance to hang out with me in a waiting room, I have many opportunities for you! I want Chris to be able to coach and teach and dean, so I am hoping to take the pressure off of him missing school as well.
9/13 Super-long MRI in Tarrytown
9/17 Drake appointment & infusion: Lanie is coming up to join!! YAY!
9/25 Horowitz follow-up appointment
10/3 Colonoscopy. I am required to have a buddy, so if Chris can't make it, I will definitely need help!
10/8 Drake appointment & Infusion: Sophia might join me!
10/29 Drake appointment & Infusion
Let me know if you want to join in on all of the FUN!
XOXO
A
I had the GI appointment on Monday. It was a quick and easy consult confirming that I will have a colonoscopy in early October. Super.
Radiation went just fine. We seem to have beginners no-luck because, similar to my first infusion, at my first treatment appointment they were running far behind schedule. Although, unlike the infusion center, someone came out about a half hour after my scheduled appointment, told us that they were running late, and then got us a meal voucher AND gave us an estimated time! While the wait was long and annoying, we felt cared-for. Radiation itself was quick and painless--just uncomfortable holding positions for a long time. The staff at the radiation center are cheerful and kind--and overall it was as pleasant an experience as one could expect for given the event itself.The only hiccup was that they frustrated me by changing the schedule frequently. No big deal, they called and I was flexible. BUT THEN, when I was leaving they said "OK, see you Thursday!" and I said, "No, I am here everyday. I will see you Wednesday." They checked the schedule. It was changed AGAIN to have me have three larger doses rather than five smaller ones. Generally, I would be thrilled that I have two fewer days at the hospital, but Jamie was driving HOURS at that moment to come and spend the night for this appointment. We have been flexible all summer with appointment times and scheduling; however, now that Chris and I have work obligations, I am asking favors of friends. Being at the whim of the hospital is grating.
I called Jamie who was about 40 minutes from her home. She was, of course, kind and sweet and gracious and understanding. I just wish we didn't need to layer frustration on top of everything else.
Symptom-wise, this week and last week have been marked by fatigue, reflux, and mouth pain. All are typical of my treatment and I just need to manage it. Right now, I am managing it with a super-gross mouthwash that numbs my whole mouth (like that post-dental work feel...) and a diet primarily of bananas.
Today, we met with Dr. Drake. I asked him to clarify about the tumor situation-- is there one or two? What about the thing on my lower-back/hip area--the bump that brought me to the MRI in the first place--is that part of it or not? Last appointment, these things were unclear. Apparently, from the scans we had recently, it appeared there was some tumor growth (expected), but it was hard to say if it was more of the same, or a new tumor. The bump on my hip is also still a question mark, and the answer is that we are getting another set of scans. Of course.
I also asked the question everyone asks me: "How long is this nonsense going to go on?" He said that it is much too early to tell, and we would need more scans and time to really answer that. I expected that answer. He was willing to add that the median treatment length is two years, so that is somewhat better than his previous vague answer of "some are on it for the rest of their lives."
Today, we also went to the infusion center and had round 3. We only waited about an hour, which was fine. It was still cold and crowded, but we noticed that they had put out some sandwiches that were snapped up quickly, and I advocated to turn off the war program on the TV to anything more cheerful.
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| The Character Education Board in progress |
Looking forward, I have a little break coming up for the first week of school: one whole week with no appointments! YAY!
If you want a chance to hang out with me in a waiting room, I have many opportunities for you! I want Chris to be able to coach and teach and dean, so I am hoping to take the pressure off of him missing school as well.
9/13 Super-long MRI in Tarrytown
9/17 Drake appointment & infusion: Lanie is coming up to join!! YAY!
9/25 Horowitz follow-up appointment
10/3 Colonoscopy. I am required to have a buddy, so if Chris can't make it, I will definitely need help!
10/8 Drake appointment & Infusion: Sophia might join me!
10/29 Drake appointment & Infusion
Let me know if you want to join in on all of the FUN!
XOXO
A
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