Wednesday, February 06, 2008
You Are Not Morg or I-Morg
Sunday I was afflicted with aphasia.
I had posted to a bulletin board and was flipping back and forth with Brian between Alias, Puppy Bowl IV, and the Superbowl. I was also trying to begin knitting a hat, and started having trouble counting my cast-on stitches.
I suddenly felt very stupid. In addition to actually having problems counting, I couldn't remember how to finish casting on. Then I couldn't figure out how to start knitting the round.
Then I got tired of watching Alias, so I tried to tell Brian that he could watch the Superbowl, since we had already seen most of a showing of Puppy Bowl.
The words wouldn't come out.
I got frustrated, Brian got frustrated with me, so I went upstairs to take a bath. When Brian tried to ask me what was wrong, I really couldn't explain or do anything much more than cry. I could pretty much only say "yes," "no," and "oh Lord." So he dialed the on-call oncologist's number, and we were told to go to the emergency room at U of M, where they tried to ask me dizzying questions I couldn't answer, and gave me various scans, which indicated positive for brain metastases.
I was admitted and have so far been through three whole-brain radiation treatments. I will undergo fourteen altogether.
What really helped me recover speech and thinking (I couldn't remember properly the days of the week or months of the year--I couldn't remember our dog's name; I couldn't spell "Elkins" or "Yanosko") was a tiny steroid pill. I have been evaluated by a speech therapist, who believes I am doing just fine. The brain radiation might cause some temporary loss of memory or cognition, but it may be possible to increase the steroid. I have also heard a lot of positive stories about people being successfully treated for brain mets so I am very hopeful.
It was terribly frightening, but we will deal with this.
For now I feel like I've had the brain helmet put on and could operate on Spock if I needed to.
I had posted to a bulletin board and was flipping back and forth with Brian between Alias, Puppy Bowl IV, and the Superbowl. I was also trying to begin knitting a hat, and started having trouble counting my cast-on stitches.
I suddenly felt very stupid. In addition to actually having problems counting, I couldn't remember how to finish casting on. Then I couldn't figure out how to start knitting the round.
Then I got tired of watching Alias, so I tried to tell Brian that he could watch the Superbowl, since we had already seen most of a showing of Puppy Bowl.
The words wouldn't come out.
I got frustrated, Brian got frustrated with me, so I went upstairs to take a bath. When Brian tried to ask me what was wrong, I really couldn't explain or do anything much more than cry. I could pretty much only say "yes," "no," and "oh Lord." So he dialed the on-call oncologist's number, and we were told to go to the emergency room at U of M, where they tried to ask me dizzying questions I couldn't answer, and gave me various scans, which indicated positive for brain metastases.
I was admitted and have so far been through three whole-brain radiation treatments. I will undergo fourteen altogether.
What really helped me recover speech and thinking (I couldn't remember properly the days of the week or months of the year--I couldn't remember our dog's name; I couldn't spell "Elkins" or "Yanosko") was a tiny steroid pill. I have been evaluated by a speech therapist, who believes I am doing just fine. The brain radiation might cause some temporary loss of memory or cognition, but it may be possible to increase the steroid. I have also heard a lot of positive stories about people being successfully treated for brain mets so I am very hopeful.
It was terribly frightening, but we will deal with this.
For now I feel like I've had the brain helmet put on and could operate on Spock if I needed to.
Labels: aphasia, brain metastases, brain scan, Brian, CT scan, Decadron, MRI, star trek, WBR, whole-brain radiation
Tuesday, November 14, 2006
No, It's not a Star Trek Convention
So this past weekend I met up with some ladies from the Young Survivors' Coalition Bulletin Board. I had no idea there were so many young women with breast cancer in this area...somebody on the boards asked, "What, is there something in the water?"
Anyway, we met at Big Buck--which I'd only ever driven past before on I-75. It has a giant beer bottle outside and much of the furniture and lighting fixtures inside are made with antlers. It is HUGE. There are tv screens everywhere, including the bathrooms.
So after a while the cameras materialized and various pictures were taken. I am relieved to know that I can give up on spending any time whatsoever drawing eyebrows on as they are invisible anyway. The most entertaining photo is the one where the people at varying stages of baldness and wigness took off our hair/hats/scarves and lined up in order of hair regrowth from cue-ball smooth to several months' growth. I cannot imagine what the other people in the restaurant must have thought.
See if you can spot me:
(Hint: I'm the short one.)
I only regret that I wasn't terribly outgoing and didn't manage to talk to the ladies at the other end of the table. Next month there is some talk of getting together for a cookie exchange; I will be happy to go with or without my hair.
Anyway, we met at Big Buck--which I'd only ever driven past before on I-75. It has a giant beer bottle outside and much of the furniture and lighting fixtures inside are made with antlers. It is HUGE. There are tv screens everywhere, including the bathrooms.
So after a while the cameras materialized and various pictures were taken. I am relieved to know that I can give up on spending any time whatsoever drawing eyebrows on as they are invisible anyway. The most entertaining photo is the one where the people at varying stages of baldness and wigness took off our hair/hats/scarves and lined up in order of hair regrowth from cue-ball smooth to several months' growth. I cannot imagine what the other people in the restaurant must have thought.
See if you can spot me:
(Hint: I'm the short one.)
I only regret that I wasn't terribly outgoing and didn't manage to talk to the ladies at the other end of the table. Next month there is some talk of getting together for a cookie exchange; I will be happy to go with or without my hair.
Labels: baldness, eyebrows, Michigan, star trek, wigs, YSC
Wednesday, May 10, 2006
Do the Borg eat ice cream?
This week I will be undergoing a new spate of tests including multiple CT scans and a comprehensive bone scan. This is actually good news: it is Dr. Hayes' opinion that since I am doing so much better now than I was in November when he first saw me, and he wants a new set of baseline tests.
Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.
His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."
We regarded each other.
"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.
I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.
Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.
After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.
On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.
We are Borg; We demand your ice cream and leftover Easter candy.
Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.
His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."
We regarded each other.
"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.
I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.
Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.
After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.
On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.
We are Borg; We demand your ice cream and leftover Easter candy.
Labels: bone scan, Brian, CT scan, Dr. Hayes, fentanyl, hormone therapy, hot flash, IV, liver, motorcycle, nausea, port, star trek
Wednesday, March 22, 2006
Appointments and CT scans and MRIs, Oh My!
This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding
Friday, October 28, 2005
What I plan to be for Halloween
For Halloween I plan to be a photon torpedo. I will be arriving at the hospital at 5:00, will be injected with contrast dye, and will be loaded into the torpedo bay where they do MRI scans.
I had an MRI last Wednesday, and the report showed some possible "activity of the L4 and L5; results inconclusive." They recommended a repeat, this time with contrasting dye.
At least this time I will know to park by the West entrance. Last time I was unaware that they wanted me to sign in at the west lobby, so I walked in the main entrance and had to negotiate several very long hallways. Then they made me walk down several more long hallways to get to Radiology. Then the MRI guy came and got me, and led me down a bunch of other corridors, until we ended up in what looked like a loading dock (complete with a hydraulic lift), and a big industrial door which slides up and down and looked like the back of an 18 wheel semi. I swear to god for a moment I thought I was being abducted.
"They're going to load me onto a truck, take me to Iowa, and perform heinous medical experiments!" Yes, I have probably seen too many episodes of X-Files. (When I related this story to a colleague, I had gotten as far as mentioning the loading dock area, when she blurted out, "You're just like Scully! You're going to end up on a rail car with probes sticking out of you!" I'm not the only one.)
November 3 I will be having my second-ever bone scan. This time the radioactive isotope will cause a mutation granting me super powers; I'm certain of it. I deserve to have super powers. I will try to use them for good and not for evil, although I'm really hoping I gain the ability to electrocute people.
I had an MRI last Wednesday, and the report showed some possible "activity of the L4 and L5; results inconclusive." They recommended a repeat, this time with contrasting dye.
At least this time I will know to park by the West entrance. Last time I was unaware that they wanted me to sign in at the west lobby, so I walked in the main entrance and had to negotiate several very long hallways. Then they made me walk down several more long hallways to get to Radiology. Then the MRI guy came and got me, and led me down a bunch of other corridors, until we ended up in what looked like a loading dock (complete with a hydraulic lift), and a big industrial door which slides up and down and looked like the back of an 18 wheel semi. I swear to god for a moment I thought I was being abducted.
"They're going to load me onto a truck, take me to Iowa, and perform heinous medical experiments!" Yes, I have probably seen too many episodes of X-Files. (When I related this story to a colleague, I had gotten as far as mentioning the loading dock area, when she blurted out, "You're just like Scully! You're going to end up on a rail car with probes sticking out of you!" I'm not the only one.)
November 3 I will be having my second-ever bone scan. This time the radioactive isotope will cause a mutation granting me super powers; I'm certain of it. I deserve to have super powers. I will try to use them for good and not for evil, although I'm really hoping I gain the ability to electrocute people.
Labels: bone scan, Halloween, hospital, MRI, star trek, superpowers, X-Files
