Just got a call from my oncologist Kaplan - everything looked fine in the MRI.
Back to the movie ...
In Eight Steps to Happiness Geshe-la says "'Self' and 'other' are relative terms, rather like 'this mountain' and 'that mountain ... 'This' and 'that' therefore depend upon our point of reference. This is also true of self and other. By climbing down the mountain of self, it is possible to ascend the mountain of other, and thereby cherish others as much as we presently cherish ourself."
Friday, January 14, 2011
Report from Whole-Brain Radiation
Yesterday I had my first of 20 whole-brain radiation treatments. In short, it went well - and fast, even though the first session was the longest, because there was a bit of setup.
We spent a few minutes in the "gowned waiting room," - they let Richard and me in, even though we remained in street clothes. So many of these offices have Internet connections now, which is really nice for us, because Richard can do his online thing while I do my thing.
I wouldn't call the room a spa, like my last targeted brain radiation - the plain setting would be familiar if you've ever had a CT, PET or MRI scan: A big whitish room, with a table in the middle and a grayish machine nearby. I'm not complaining - I'm just saying I didn't see anything in the way of Oriental design touches : )
The techs were friendly and competent.
When you go to lie down, you put your head on a small plastic riser - it's like the squarish packing from an electronic device you buy - that is, nothing fancy. If you saw it on the floor, you'd recycle it. No cushioning, not that it was uncomfortable.
The bed is pretty narrow - I mentioned my arms had a tendency to slide off the sides - and I didn't want any body movement during the radiation. They gave me a circle of plastic to hold with my hands on my chest. It reminded me of a dog toy! Brea, the tech, said their previous device was a pillow cushion with the ends knotted, which is another kind of dog tug toy : )
First they measured my head with calipers. You can insert your chosen joke here about a large head equating to ego or to intelligence (as Richard claims, because like some in his family, he has a physically large head; I always lose when I argue with him, so what does that say?).
The techs took 2 x-rays from either side of my head - for positioning, not for tracking the disease. (Every week I'll meet with the radiation oncologist Dr. Mate to go over my progress. I can guess there'll be a CT or MRI scan at least halfway through, so we can have some pictures to look at.)
I still have my mask from the targeted radiation - which I may use again in 2 months - but for this procedure, they just use a bit of tape across your head to keep it stationary.
I had my eyes closed for the few minutes of actual treatments, but I saw blue lights! Blue lights! I know I can imagine lights and nectars, but I'm still pretty literal - the IV chemo tends to be medicine nectar, and radiation tends to be healing lights. Blue is of course a Medicine Buddha color. More healing coming into me.
Last they also took a regular old digital photo of my face. I've gotten so many other kinds of images of myself these last month. This one was the same kind you'd take of a friend. When we walked in today, the staff already knew Richard and me by name, but like more offices these days that are doing everything they can to make you feel welcome, so they put your picture on file so everyone can recognize and help you.
We spent a few minutes in the "gowned waiting room," - they let Richard and me in, even though we remained in street clothes. So many of these offices have Internet connections now, which is really nice for us, because Richard can do his online thing while I do my thing.
I wouldn't call the room a spa, like my last targeted brain radiation - the plain setting would be familiar if you've ever had a CT, PET or MRI scan: A big whitish room, with a table in the middle and a grayish machine nearby. I'm not complaining - I'm just saying I didn't see anything in the way of Oriental design touches : )
The techs were friendly and competent.
When you go to lie down, you put your head on a small plastic riser - it's like the squarish packing from an electronic device you buy - that is, nothing fancy. If you saw it on the floor, you'd recycle it. No cushioning, not that it was uncomfortable.
The bed is pretty narrow - I mentioned my arms had a tendency to slide off the sides - and I didn't want any body movement during the radiation. They gave me a circle of plastic to hold with my hands on my chest. It reminded me of a dog toy! Brea, the tech, said their previous device was a pillow cushion with the ends knotted, which is another kind of dog tug toy : )
First they measured my head with calipers. You can insert your chosen joke here about a large head equating to ego or to intelligence (as Richard claims, because like some in his family, he has a physically large head; I always lose when I argue with him, so what does that say?).
The techs took 2 x-rays from either side of my head - for positioning, not for tracking the disease. (Every week I'll meet with the radiation oncologist Dr. Mate to go over my progress. I can guess there'll be a CT or MRI scan at least halfway through, so we can have some pictures to look at.)
I still have my mask from the targeted radiation - which I may use again in 2 months - but for this procedure, they just use a bit of tape across your head to keep it stationary.
I had my eyes closed for the few minutes of actual treatments, but I saw blue lights! Blue lights! I know I can imagine lights and nectars, but I'm still pretty literal - the IV chemo tends to be medicine nectar, and radiation tends to be healing lights. Blue is of course a Medicine Buddha color. More healing coming into me.
Last they also took a regular old digital photo of my face. I've gotten so many other kinds of images of myself these last month. This one was the same kind you'd take of a friend. When we walked in today, the staff already knew Richard and me by name, but like more offices these days that are doing everything they can to make you feel welcome, so they put your picture on file so everyone can recognize and help you.
Thursday, January 13, 2011
Updated Online Treatment Calendar
I think I got it right.
Go to http://www.google.com/calendar/embed?src=5jev7gggss3ag66gnjeakm5bi0%40group.calendar.google.com&ctz=America/Los_Angeles
or see the permanent link in the sidebar at right
Go to http://www.google.com/calendar/embed?src=5jev7gggss3ag66gnjeakm5bi0%40group.calendar.google.com&ctz=America/Los_Angeles
or see the permanent link in the sidebar at right
Cast of Characters: My Medical Team
In case you're having trouble keeping track of who's who (Radiation Oncologist #1 vs. #2, Medical Oncologist vs. Gynecological Oncologist), I set up a webpage:
http://whoswhoonmyhealingteam.blogspot.com/
When I can find a nice picture of Medicine Buddha, I will add him : )
http://whoswhoonmyhealingteam.blogspot.com/
When I can find a nice picture of Medicine Buddha, I will add him : )
Like predicting the weather
Cancer patients talk about prognosis and statistics and how much to pay attention to them. It occurs to me it's like predicting the weather - I like knowing what's forecast, even though it's often wrong. At least I can be prepared.
In the US Pacific Northwest the weather is very changeable. I almost always have a jacket with me, just in case there's rain. We like to say, "If you don't like the current conditions, just wait 5 minutes" (ha ha!).
I understand that meteorologists - and doctors - are doing their best, and that they say there are so many different factors that can dramatically change things.
For example, this country has had some crazy unexpected weather this winter: Snow in places that rarely get snow. Really bad snow in places that regularly do get snow. That's not even including the terrible fires in Russia and Israel, flooding in Europe, and all the other weather-related disasters. You hear about hurricanes headed for cities that end out far off at sea.
In my area this week, experts thought we might be getting a bad storm. We did get some snow, but it quickly turned to rain and melted away.
Of course, we'd all like our lives to be full of pleasant sunny days, but if we have to experience bad weather, may it quickly melt away.
The other part of this analogy I'd like to mention is handling it. There are places that plan for, say, snow, and it's not a big deal when they get a lot of it.
Also if you can accept that you're stuck at home, you can be warm and comfy and rested - accepting fatigue might be like that too. Sometimes you have to give in.
I know how to go deep inside, with my Guru, where I am safe no matter what happens. I can feel blessings pouring down, holding me up, so that I am not worried.
One of my favorite stories is about the Catholic priest Mychal Judge who died in the Twin Towers on 9/11. He was known for saying, "If you want to make God laugh, tell him what you're doing tomorrow." We can make plans, but hold them loosely. We're not really in control, although we like to play driver when we can.
I'd like to think my spiritual and mental preparations, along with my great medical team, will help me be to take care of the snow if it does fall. I have a "Girl Scout" mentality - I like to be prepared (lots of info, living will, priorities in order, etc., of course, and definitely Buddha, Dharma and Sangha).
In the US Pacific Northwest the weather is very changeable. I almost always have a jacket with me, just in case there's rain. We like to say, "If you don't like the current conditions, just wait 5 minutes" (ha ha!).
I understand that meteorologists - and doctors - are doing their best, and that they say there are so many different factors that can dramatically change things.
For example, this country has had some crazy unexpected weather this winter: Snow in places that rarely get snow. Really bad snow in places that regularly do get snow. That's not even including the terrible fires in Russia and Israel, flooding in Europe, and all the other weather-related disasters. You hear about hurricanes headed for cities that end out far off at sea.
In my area this week, experts thought we might be getting a bad storm. We did get some snow, but it quickly turned to rain and melted away.
Of course, we'd all like our lives to be full of pleasant sunny days, but if we have to experience bad weather, may it quickly melt away.
The other part of this analogy I'd like to mention is handling it. There are places that plan for, say, snow, and it's not a big deal when they get a lot of it.
Also if you can accept that you're stuck at home, you can be warm and comfy and rested - accepting fatigue might be like that too. Sometimes you have to give in.
I know how to go deep inside, with my Guru, where I am safe no matter what happens. I can feel blessings pouring down, holding me up, so that I am not worried.
One of my favorite stories is about the Catholic priest Mychal Judge who died in the Twin Towers on 9/11. He was known for saying, "If you want to make God laugh, tell him what you're doing tomorrow." We can make plans, but hold them loosely. We're not really in control, although we like to play driver when we can.
I'd like to think my spiritual and mental preparations, along with my great medical team, will help me be to take care of the snow if it does fall. I have a "Girl Scout" mentality - I like to be prepared (lots of info, living will, priorities in order, etc., of course, and definitely Buddha, Dharma and Sangha).
Wednesday, January 12, 2011
Radiation / Chemo "Sandwich"
Sorry for the month-long sabbatical. I should have been keeping you posted, because now things are getting busy again.
Today Richard & I spend 9 hours at various doctors, mostly waiting.
I started chemo last week and had a smaller treatment today too. Tomorrow I begin 4 weeks of mild, whole-brain radiation every weekday. I'll continue to get chemo - hence what one of my doctors called the "sandwich."
My analogy is serving criminal sentences concurrently.
The side effects of the radiation are fatigue, problems with memory and concentration ("radiation brain" anyone?), and hair loss. Well, I was already was going to lose my hair from the chemo, so that doesn't really count (I think the sentencing analogy holds).
Friday I'm also having a scan of my full spine, just to make sure nothing's in there that shouldn't be. My oncologist also mentioned a spinal tap, although that's not on the schedule yet.
... All because of mild neck pain, going up along my left ear and around my eyeball socket. It's something you'd almost forget to mention to a doctor, but it led to a brain MRI last week, which showed I have some diffuse tiny tumors in my head - "snow" my one radiation doc called it today - plus 2 more distinct masses they may "spot-weld" with targeted radiation after the whole-brain radiation is done.
I told my oncologist today I had been tired and was feeling "lousy." He corrected me and said the correct medical term is "crappy" ! You can see why I like him. He's also an excellent, and very thorough, doctor. Before Richard and I left his office, at this short pre-chemo appointment, he asked twice if there was anything else he could do for me.
My radiation doc was confident I'd feel better in at least a week or two, after the treatments; my oncologist gave me a prescription (again) for Decadron, with the instruction to call him on Friday about whether it was helping.
There are so many people who need prayers, but I am not too proud to request them, as long as you're making lots of prayers, for all kinds of suffering.
OK, speaking of "sandwiches," I'm going to go get something to eat. ...
Today Richard & I spend 9 hours at various doctors, mostly waiting.
I started chemo last week and had a smaller treatment today too. Tomorrow I begin 4 weeks of mild, whole-brain radiation every weekday. I'll continue to get chemo - hence what one of my doctors called the "sandwich."
My analogy is serving criminal sentences concurrently.
The side effects of the radiation are fatigue, problems with memory and concentration ("radiation brain" anyone?), and hair loss. Well, I was already was going to lose my hair from the chemo, so that doesn't really count (I think the sentencing analogy holds).
Friday I'm also having a scan of my full spine, just to make sure nothing's in there that shouldn't be. My oncologist also mentioned a spinal tap, although that's not on the schedule yet.
... All because of mild neck pain, going up along my left ear and around my eyeball socket. It's something you'd almost forget to mention to a doctor, but it led to a brain MRI last week, which showed I have some diffuse tiny tumors in my head - "snow" my one radiation doc called it today - plus 2 more distinct masses they may "spot-weld" with targeted radiation after the whole-brain radiation is done.
I told my oncologist today I had been tired and was feeling "lousy." He corrected me and said the correct medical term is "crappy" ! You can see why I like him. He's also an excellent, and very thorough, doctor. Before Richard and I left his office, at this short pre-chemo appointment, he asked twice if there was anything else he could do for me.
My radiation doc was confident I'd feel better in at least a week or two, after the treatments; my oncologist gave me a prescription (again) for Decadron, with the instruction to call him on Friday about whether it was helping.
There are so many people who need prayers, but I am not too proud to request them, as long as you're making lots of prayers, for all kinds of suffering.
OK, speaking of "sandwiches," I'm going to go get something to eat. ...
Thursday, December 16, 2010
Not for the Fainthearted
If you want to know what end-stage cancer is like for a particular person, there's a very brave woman with ovarian cancer who has a candid blog that includes photos.
It can make your death awareness very specific and help you value your precious human life.
http://shoppingkharma.blogspot.com/2010/12/am-i-wasting-away.html
"As for this journey of mine, they (social workers, nurses, doctors, health care workers) have all told me since I started my hospice care that I would start to notice my body shutting down. The last couple of days we have seen some really rapid changes in me from my weight to much extra skin and no muscle tone? Where did all my muscles go? I am starting to look like this skeleton with skin on it? I used to be so muscular, strong, and so very athletic; now I can't really lift much and have officially hit the double digits as far as my weight is concerned (98lbs). I was thinking that I might survive into next year but now it's seeming like Christmas might just be a real miracle for me. ... "
It can make your death awareness very specific and help you value your precious human life.
http://shoppingkharma.blogspot.com/2010/12/am-i-wasting-away.html
"As for this journey of mine, they (social workers, nurses, doctors, health care workers) have all told me since I started my hospice care that I would start to notice my body shutting down. The last couple of days we have seen some really rapid changes in me from my weight to much extra skin and no muscle tone? Where did all my muscles go? I am starting to look like this skeleton with skin on it? I used to be so muscular, strong, and so very athletic; now I can't really lift much and have officially hit the double digits as far as my weight is concerned (98lbs). I was thinking that I might survive into next year but now it's seeming like Christmas might just be a real miracle for me. ... "
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