Vacation is over and, as promised, this post will focus on medical stuff.
Tomorrow, Nate and I will drive to Chicago so that I can start the Phase 2 study bright and early (7:45 AM) on Wednesday. Here's the outline of the study design:
Everyone starts on the drug, brivanib, which is designed to cut off blood flow to solid tumors. The drug is oral, and taken every day. After three three-week cycles, participants have a CT scan to see if the drug is working. The researchers expect it to work in a third of the participants; to not work in a third; and to be equivocal in a third. If it's working, you continue on the drug. If it's not working, you're out of the study. If they can't tell whether it's working, you are randomly assigned to either a placebo or the drug. If you're in this group, and start to do worse, they "unblind" you, and, if you are on the placebo, put you back on the drug.
Of course, there are no guarantees that the drug will work, and no knowing what the side effects may be, but nothing ventured, nothing gained.
The study requires that I be in Chicago every Wednesday in January, although the 21st and 28th are very short visits, and two Wednesdays in February, one of them a 7:45 AM appearance. This means that I will often be gone from Madison two or three days mid-week, depending on the weather. We have a wonderful place to stay in Wilmette, with my junior high friend Barbara Stock, and since Wilmette is pretty far from the hospital, the cancer resource people at the hospital have found us a good rate at a downtown hotel for the Tuesdays before the 7:45 AM appointments. Nate is staying in Madison for an indeterminate time to do the driving (and much else)--thanks to his fellowship sponsors at the Harvard human rights program, he can work from here as well as Bogota, at least for a time. And thanks to Meghan, who is in Bogota, for lending him to me!
How I feel: Still weak and often tired--it seems easier to sit around than to do any exercise, though I know that the only things that will increase my strength and energy are eating and exercise. Fortunately, with a lot of prompting from Nate, I am beginning to eat decent amounts of food again. (In the hospital and for a couple of weeks afterward, I ate almost nothing.) He's a great cook--this morning I had a bit of a truly gourmet mac and cheese casserole he made. And I am hoping to get back to the gym next week. Maybe before then I can motivate myself to do some easy exercises at home.
In summary, it's a long, slow slog, but the direction seems right, and I'm optimistic.
Showing posts with label phase 2 study. Show all posts
Showing posts with label phase 2 study. Show all posts
Monday, January 12, 2009
Monday, January 5, 2009
More vacation!
Decided to write this post on Sunday in LA and schedule it for "publication" tomorrow so I don't have to worry about it when I get back to Madison.
The past week has been wonderful. After Jed's marathon driving feat from LA to El Paso, and meeting Nate at the El Paso airport, we headed the car toward Big Bend on the 29th (was that Sunday? or Monday?--it's been the sort of vacation where you lose track of the days). We didn't stay in the national park, but rather at Lajitas, a beautiful but now financially troubled fancy resort just outside the state park, which I think is even larger than the national park. In November, a flood wiped out the resort's golf course (which had been its main attraction, I think), but Nate found a bunch of articles on the internet that suggested the financial problems had begun a few years ago. No need to go into details--for us, the place was just fine. More than just fine--luxurious. I had a really good massage at the spa; we drove into the national park, including the Chisos Mountains, and saw quite spectacular scenery; we ate well and slept on terrific beds; Jed and Nate bought me a painted walking stick that helped me negotiate short walks (from the parking lot to the dining room, say), which were a challenge at 4,000 feet.
We celebrated New Year's eve with room service and TV--and then Nate asked if I would like him to fly back to Madison with me and drive me to Chicago for my appointment on Thursday. I was overjoyed, because I had been spending a lot of time trying to figure out how to deal with the trip if it was really snowy. Instantly, I stopped obsessing about it. I really can't express how grateful I am to both Jed and Nate for helping me through these difficult times--or explain the many, many ways they've helped me do what I need to do without losing or compromising my dignity. (What little I have left!)
On January 1 we left Lajitas and drove to Marfa, Texas, an odd little piece of Williamsburg (Brooklyn) that's about three hours by car from anywhere. In the 1970s, Donald Judd, a minimalist artist, bought about half the town and an old Army base and went about creating his art work and, not coincidentally, an artists' colony, in the middle of west Texas. Jed had been here five or so years ago, and he knew that the tours of the Chinati Foundation, which houses Judd's art, involved a lot of walking. But the Foundation was pretty accommodating of my needs. On the morning tour, which includes walks through huge buildings where Judd's big--and each subtly different--machined aluminum boxes are lined up, I was accompanied by Yolanda, one of the office staff, who carried a folding chair that I could sit on whenever I needed to rest. The buildings have huge windows, and the sun, which is pretty intense even in early January, reflects off the boxes, creating interesting effects of shadows, translucence, and so forth. Just sitting and looking at the boxes is almost meditative. Lovely.
In the afternoon, Nate and Jed figured out how to borrow a wheelchair from the two-room Marfa medical clinic, and we essentially got a private tour of the artworks, the highlight of which are fluorescent light installations by Dan Flavin. I had seen one of his installations a few years ago at the LA County Museum, but it was a lot of fun to be wheeled down the long halls into the tunnel-like recesses full of light.
In Marfa, we stayed at the historic hotel, a really gorgeous building with a downstairs lounge warmed by a fireplace, where I could hang out. Our room was quite nice, but up 24 steps, which I chose to climb once a day. (The elevator stopped operating decades ago. Jed offered to carry me up the steps, but I assured him that, even at 4,000 feet, I could climb them myself. I think he was amazed that I did, but they were not much of a problem. Once a day.)
And then, yesterday, Jed and Nate shared the 14 hour drive back to LA. My sister Paula is coming late this afternoon and staying for dinner, and tomorrow, Jed returns to law school and Nate and I return to Madison. I haven't checked the weather; I just assume it will be cold, very, and snowy, likewise.
We head to Chicago on Wednesday, and I have my appointment to sign the consent form for the Phase 2 study on Thursday morning, so presumably next week I will have something substantive to say about the medical aspect of this journey. See you then!
The past week has been wonderful. After Jed's marathon driving feat from LA to El Paso, and meeting Nate at the El Paso airport, we headed the car toward Big Bend on the 29th (was that Sunday? or Monday?--it's been the sort of vacation where you lose track of the days). We didn't stay in the national park, but rather at Lajitas, a beautiful but now financially troubled fancy resort just outside the state park, which I think is even larger than the national park. In November, a flood wiped out the resort's golf course (which had been its main attraction, I think), but Nate found a bunch of articles on the internet that suggested the financial problems had begun a few years ago. No need to go into details--for us, the place was just fine. More than just fine--luxurious. I had a really good massage at the spa; we drove into the national park, including the Chisos Mountains, and saw quite spectacular scenery; we ate well and slept on terrific beds; Jed and Nate bought me a painted walking stick that helped me negotiate short walks (from the parking lot to the dining room, say), which were a challenge at 4,000 feet.
We celebrated New Year's eve with room service and TV--and then Nate asked if I would like him to fly back to Madison with me and drive me to Chicago for my appointment on Thursday. I was overjoyed, because I had been spending a lot of time trying to figure out how to deal with the trip if it was really snowy. Instantly, I stopped obsessing about it. I really can't express how grateful I am to both Jed and Nate for helping me through these difficult times--or explain the many, many ways they've helped me do what I need to do without losing or compromising my dignity. (What little I have left!)
On January 1 we left Lajitas and drove to Marfa, Texas, an odd little piece of Williamsburg (Brooklyn) that's about three hours by car from anywhere. In the 1970s, Donald Judd, a minimalist artist, bought about half the town and an old Army base and went about creating his art work and, not coincidentally, an artists' colony, in the middle of west Texas. Jed had been here five or so years ago, and he knew that the tours of the Chinati Foundation, which houses Judd's art, involved a lot of walking. But the Foundation was pretty accommodating of my needs. On the morning tour, which includes walks through huge buildings where Judd's big--and each subtly different--machined aluminum boxes are lined up, I was accompanied by Yolanda, one of the office staff, who carried a folding chair that I could sit on whenever I needed to rest. The buildings have huge windows, and the sun, which is pretty intense even in early January, reflects off the boxes, creating interesting effects of shadows, translucence, and so forth. Just sitting and looking at the boxes is almost meditative. Lovely.
In the afternoon, Nate and Jed figured out how to borrow a wheelchair from the two-room Marfa medical clinic, and we essentially got a private tour of the artworks, the highlight of which are fluorescent light installations by Dan Flavin. I had seen one of his installations a few years ago at the LA County Museum, but it was a lot of fun to be wheeled down the long halls into the tunnel-like recesses full of light.
In Marfa, we stayed at the historic hotel, a really gorgeous building with a downstairs lounge warmed by a fireplace, where I could hang out. Our room was quite nice, but up 24 steps, which I chose to climb once a day. (The elevator stopped operating decades ago. Jed offered to carry me up the steps, but I assured him that, even at 4,000 feet, I could climb them myself. I think he was amazed that I did, but they were not much of a problem. Once a day.)
And then, yesterday, Jed and Nate shared the 14 hour drive back to LA. My sister Paula is coming late this afternoon and staying for dinner, and tomorrow, Jed returns to law school and Nate and I return to Madison. I haven't checked the weather; I just assume it will be cold, very, and snowy, likewise.
We head to Chicago on Wednesday, and I have my appointment to sign the consent form for the Phase 2 study on Thursday morning, so presumably next week I will have something substantive to say about the medical aspect of this journey. See you then!
Monday, December 22, 2008
Gifts
Last week, I got three wonderful gifts of a medical sort. First, the follow-up X-ray of my lungs was much improved after the pleurodesis, and the doctors agreed I was not crazy to get on the train tomorrow and head west. Second, they suggested that one of the reasons I was so tired was that I was marginally anemic, or maybe just plain anemic, and marginally in need of more red blood cells. So Friday I had a transfusion, and it has made me more peppy, though certainly not hugely energetic. And third, I learned, also on Friday, that I am still being considered for the Phase 2 study at the University of Chicago. I am to be there on Thursday morning, January 8, to sign the consent form and begin the further screening process. This means leaving Madison on Jan 7, less than two days after I get home from my trip to Clifornia and Texas--I just hope by then the weather has moderated a bit.
Obviously, this is all good news, and the sorts of gifts I can never repay. But it does occur to me that all you healthy people out there can help by going to your nearest blood bank and making a donation. I used to do this regularly as a young adult, and really, it's one of the most rewarding things I've ever done. They treat you like a very special person (which you are), and you know that you're making a really valuable contribution to someone's health.
Now I am in the very strange position of heading out of Madison to see friends and family over the holidays (and my sister Paula's birthday) and not taking a single gift with me. Not even a house gift of Wisconsin cheese or chocolate. I have barely been out of the house since the beginning of the month, and then chiefly on trips back and forth to the hospital and clinics. I haven't driven in weeks. And internet shopping seems particularly heartless to me. I've alerted my family to expecct their Chanukah gifts by Groundhog's Day. Still, it feels weird.
But I have seized on a conversation I had recently with my neighbor Bridget, a self-confessed "ambivalent Catholic," who was describing the priest's message at mass a week or two ago--about how this season is about presence, not presents. It does seem egotistical, if not egomanaical, to suggest that my friends and family shoulde be satisfied with my presence. But I know, from my experience the last couple of weeks, that people's presence is really what it's all about. I have been helped by so many people, in so many ways--from the doctors who made sure I got to my book party, to the hosts of the book party, to friends who brought food and comfort, did laundry, shoveled snow, drove me to the clinic and hospital and also on a little round of errands, helped me prepare for and totally cleaned up after last night's mini-solstice party... these people's help and their simple presence in my life has literally made it possible for me to function and progress beyond "invalid" status. These are the true gifts this season.
As the light grows stronger and the days longer, my wish for all of you is that people are present in your lives, as they have been for me. In the last chapter of Facing Fear, I write about the importance of community. But the chapter is really about the importance of other communities, in other places. I wish I had known, when I was writing that chapter, how much I would come to value my own community, my friends and neighbors. I would have included you all in the book.
Thank you. May you have holidays full of the presence of good friends and family.
Obviously, this is all good news, and the sorts of gifts I can never repay. But it does occur to me that all you healthy people out there can help by going to your nearest blood bank and making a donation. I used to do this regularly as a young adult, and really, it's one of the most rewarding things I've ever done. They treat you like a very special person (which you are), and you know that you're making a really valuable contribution to someone's health.
Now I am in the very strange position of heading out of Madison to see friends and family over the holidays (and my sister Paula's birthday) and not taking a single gift with me. Not even a house gift of Wisconsin cheese or chocolate. I have barely been out of the house since the beginning of the month, and then chiefly on trips back and forth to the hospital and clinics. I haven't driven in weeks. And internet shopping seems particularly heartless to me. I've alerted my family to expecct their Chanukah gifts by Groundhog's Day. Still, it feels weird.
But I have seized on a conversation I had recently with my neighbor Bridget, a self-confessed "ambivalent Catholic," who was describing the priest's message at mass a week or two ago--about how this season is about presence, not presents. It does seem egotistical, if not egomanaical, to suggest that my friends and family shoulde be satisfied with my presence. But I know, from my experience the last couple of weeks, that people's presence is really what it's all about. I have been helped by so many people, in so many ways--from the doctors who made sure I got to my book party, to the hosts of the book party, to friends who brought food and comfort, did laundry, shoveled snow, drove me to the clinic and hospital and also on a little round of errands, helped me prepare for and totally cleaned up after last night's mini-solstice party... these people's help and their simple presence in my life has literally made it possible for me to function and progress beyond "invalid" status. These are the true gifts this season.
As the light grows stronger and the days longer, my wish for all of you is that people are present in your lives, as they have been for me. In the last chapter of Facing Fear, I write about the importance of community. But the chapter is really about the importance of other communities, in other places. I wish I had known, when I was writing that chapter, how much I would come to value my own community, my friends and neighbors. I would have included you all in the book.
Thank you. May you have holidays full of the presence of good friends and family.
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