If everything continues to go well, I'll be at Summer Festival July 30- August 5. I can't believe it! I first seriously considered the possibility on Sunday, after I'd had some energy for a few days. After consulting with my oncologist on Wednesday, I booked a flight - the same flight that a handful of Seattle Sangha are on, so they'll be able to look after me. I couldn't do it alone. What are the chances at this late day of that itinerary still being available, and at a reasonable price too? This morning I got confirmation that I have a place to stay at a cottage north of Ulverston with some other Festival-goers. I see Dorje Shugden's hand in all of this - ordinary life does not work out like this.
Hope all of you who are at Festival this week enjoy the empowerment, the teachings and the retreat. Please take good notes : )
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, July 24, 2009
Finally, an Update: Doing Very Well
Hello! I'm back. Sorry for the long break from blogging. I've been living my life, trying to catch up with my life and resting from my life.
My doctors say I'm doing very well. Tuesday I saw my naturopath and Wednesday I saw my oncologist. Both think I'm doing really well. In fact, my oncologist thinks that if they did a CT scan today, it would be clear. Which means that because he didn't find anything in my physical exam and because of my low CA-125, I'm most likely in remission already. That tumor marker dropped again, to 11.2, which is great news.
I think these last 2 rounds of chemo are like insurance. He even suggested I could skip the 6th round, because I may have reached the maximum benefit already and the chemo has some detrimental effects. The actual CT scan is scheduled for early September, and when I see my oncologist to talk about post-chemo plans September 4th.
Yesterday and today I'm in the hospital for my regularly scheduled chemo - the beginning of round 5. I also have my usual view of the city and Elliott Bay, the port, freighters, ferries and pleasure boats. Rebecca stopped by to visit. I'm not sure how she found the time, because she's one of the few people who's "holding down the fort" while everyone else is at Summer Festival. (Fortunately she got to go to Spring Festival.)
My doctors say I'm doing very well. Tuesday I saw my naturopath and Wednesday I saw my oncologist. Both think I'm doing really well. In fact, my oncologist thinks that if they did a CT scan today, it would be clear. Which means that because he didn't find anything in my physical exam and because of my low CA-125, I'm most likely in remission already. That tumor marker dropped again, to 11.2, which is great news.
I think these last 2 rounds of chemo are like insurance. He even suggested I could skip the 6th round, because I may have reached the maximum benefit already and the chemo has some detrimental effects. The actual CT scan is scheduled for early September, and when I see my oncologist to talk about post-chemo plans September 4th.
Yesterday and today I'm in the hospital for my regularly scheduled chemo - the beginning of round 5. I also have my usual view of the city and Elliott Bay, the port, freighters, ferries and pleasure boats. Rebecca stopped by to visit. I'm not sure how she found the time, because she's one of the few people who's "holding down the fort" while everyone else is at Summer Festival. (Fortunately she got to go to Spring Festival.)
Monday, July 6, 2009
Good News
My CA-125 (tumor marker) dropped again - to 14.7, which by some standards is considered within the normal range. This is very good news. The chemo is working. My oncologist wants to see it drop further, to below 10 or even to 0 (if he could, I'm sure he'd even drive it below 0). As I understand it, they'll want me to have the full 6 courses of chemo no matter what that marker does.
Thursday and Friday I got chemo in the hospital. It was just like the last time - I felt perfectly comfortable during the infusions but wiped out when I got home. I rested all weekend and will rest again after I finish typing this.
Thursday and Friday I got chemo in the hospital. It was just like the last time - I felt perfectly comfortable during the infusions but wiped out when I got home. I rested all weekend and will rest again after I finish typing this.
Saturday, June 27, 2009
Pray for Malaya
Please pray for Malaya, a nun at KMC New Mexico in Albuquerque, who is close to dying from ovarian cancer. (You may know her as "Nan," which was her lay name until she ordained a couple of years ago.) She was the long-time caregiver for her elderly mother, who died last week. Please also pray for Malaya's sister.
Malaya was diagnosed a month after me, which made me feel even closer to her. I was looking forward to going on this cancer journey together and was hoping I'd be able to help in some small way. When Jody told me this news this morning, it hit me pretty hard. I should know better - because samsara is so harsh - but I wasn't expecting Malaya to go so fast.
I'm off to Wishfulfilling Jewel - where we'll dedicate for Malaya, her mother and her sister - so I have to run, but I wanted to get this request out before I went.
Malaya was diagnosed a month after me, which made me feel even closer to her. I was looking forward to going on this cancer journey together and was hoping I'd be able to help in some small way. When Jody told me this news this morning, it hit me pretty hard. I should know better - because samsara is so harsh - but I wasn't expecting Malaya to go so fast.
I'm off to Wishfulfilling Jewel - where we'll dedicate for Malaya, her mother and her sister - so I have to run, but I wanted to get this request out before I went.
Friday, June 26, 2009
Shadows on the Outside - Funny & Inspiring
Came across this old piece called "Sincere meditations" by Anne Lamott yesterday and thought you'd enjoy it. It's about a man with severe facial deformities. which he calls "shadows on the outside."
Here's how it begins:
"A friend said mournfully the other day that he'd lived his life like the professor on 'Gilligan's Island.' While he found time to fashion generators out of palm fronds, vaccines out of algae, he never got down to fixing that huge hole in the boat so he could go home. How many people actually do? Sometimes, if you are lucky and brave, you can watch someone who's met with serious illness or loss do this kind of restoration, this work that you may suspect we are here on earth to do. Or if you've ever seen David Roche, the monologist and pastor of the Church of 80 Percent Sincerity, you may have already witnessed this process."
If you keep reading you get to this:
" 'We in the Church of 80 Percent Sincerity do not believe in miracles,' he said. 'But we do believe that you have to stay alert, because good things happen. When God opens the door, you've got to put your foot in it.'
...
God, it's such subversive material, so contrary to everything society leads us to believe -- that if you look good, you'll be happy, and have it all together, and then you'll be successful and nothing will go wrong and you won't have to die, and the rot can't get in."
Of course I don't agree with all of it - for example, I believe in 100% sincerity and 100% compassion - I hope that goes without saying.
Here's how it begins:
"A friend said mournfully the other day that he'd lived his life like the professor on 'Gilligan's Island.' While he found time to fashion generators out of palm fronds, vaccines out of algae, he never got down to fixing that huge hole in the boat so he could go home. How many people actually do? Sometimes, if you are lucky and brave, you can watch someone who's met with serious illness or loss do this kind of restoration, this work that you may suspect we are here on earth to do. Or if you've ever seen David Roche, the monologist and pastor of the Church of 80 Percent Sincerity, you may have already witnessed this process."
If you keep reading you get to this:
" 'We in the Church of 80 Percent Sincerity do not believe in miracles,' he said. 'But we do believe that you have to stay alert, because good things happen. When God opens the door, you've got to put your foot in it.'
...
God, it's such subversive material, so contrary to everything society leads us to believe -- that if you look good, you'll be happy, and have it all together, and then you'll be successful and nothing will go wrong and you won't have to die, and the rot can't get in."
Of course I don't agree with all of it - for example, I believe in 100% sincerity and 100% compassion - I hope that goes without saying.
Monday, June 22, 2009
My Life as a Dog
Sleeping, resting, eating, napping, going for walks, snoozing, snacking, dozing, crashing, sacking out, eating - this has been my life the last couple of weeks - just like a dog's, but without the barking. Except for the walks, you could say it was a cat's life. I probably seem as aloof as a cat, because when I'm this tired I don't have the energy to talk on the phone or respond to emails - but I appreciate your calls and emails all the same.
On a typical day I sleep in, then get up and move to the couch. When the weather's nice, I'll spend some time lying on a Thermarest mattress on the deck; when it starts to cool off, I'm back to the couch.
I have a bit more energy today and should keep improving this week, until my next treatment July 2.
Mostly it's the Cisplatin chemo I get in the hospital that wipes me out. I can illustrate it with numbers: The day before treatment, my ANC (a key measure of my white cells) was 3.8; after treatment, it was 0.5. Normally the ANC has to be 1.0 to get part 2 of the treatment, but again my doctor said to go ahead, because I also got a shot of Neulasta, which he knows will bring my counts back up in a few days. I was sorry to miss Saturday's fundraiser, but with my counts so low I'm vulnerable to infection.
It's a good thing I've always believed in the power of thought. When I was in college, I can remember debating with friends about how they defined their lives: They insisted that what really counted was doing, not thinking or being, and to them doing meant actions that other people could see. I wasn't very good at arguing, but I believed deep down in what Buddhism calls "mental actions." So even though all I can do some days is lie on the couch, I can still recite mantras and practice taking and giving. I'm grateful that our tradition offers a wide range of practices, from the ones that fit under a fingernail to the ones as vast as space, so that whatever your capacities or affinities, there is always something you can do.
On a typical day I sleep in, then get up and move to the couch. When the weather's nice, I'll spend some time lying on a Thermarest mattress on the deck; when it starts to cool off, I'm back to the couch.
I have a bit more energy today and should keep improving this week, until my next treatment July 2.
Mostly it's the Cisplatin chemo I get in the hospital that wipes me out. I can illustrate it with numbers: The day before treatment, my ANC (a key measure of my white cells) was 3.8; after treatment, it was 0.5. Normally the ANC has to be 1.0 to get part 2 of the treatment, but again my doctor said to go ahead, because I also got a shot of Neulasta, which he knows will bring my counts back up in a few days. I was sorry to miss Saturday's fundraiser, but with my counts so low I'm vulnerable to infection.
It's a good thing I've always believed in the power of thought. When I was in college, I can remember debating with friends about how they defined their lives: They insisted that what really counted was doing, not thinking or being, and to them doing meant actions that other people could see. I wasn't very good at arguing, but I believed deep down in what Buddhism calls "mental actions." So even though all I can do some days is lie on the couch, I can still recite mantras and practice taking and giving. I'm grateful that our tradition offers a wide range of practices, from the ones that fit under a fingernail to the ones as vast as space, so that whatever your capacities or affinities, there is always something you can do.
Thursday, June 11, 2009
Break's Over - on to Round 3
Hello all. I enjoyed my week off, sitting on the deck reading, taking the dog for walks and resting. It felt just like being on vacation, especially since the weather has been so pleasant - not that the sun is a true cause of happiness, as Gen-la Dekyong reminded us at the Post Spring Festival Retreat here in Seattle : )
Earlier this morning I had bloodwork done and met with a physician's assistant, Erin Shade, who examined me and asked lots of questions about how I've been feeling (in short, very good).
The chemo's working: my tumor marker CA-125 dropped again. That's very good news.
Now I'm in the hospital - back in room 1111 ! - getting chemo: 24 hours of IV Taxol, then a few hours of IP Cisplatin. You're welcome to come visit me in the hospital if you like: I'm at Swedish on "Pill Hill," in the SW wing. I should be here until tomorrow evening; if you need to ask for me, use my "real" name, "Meredith.
Next Fri I'll get a few hours of IP Taxol at the doctor's office. That will mark the halfway point for chemo, as I'm scheduled for 6 rounds in all.
I've been working my way through some cancer and nutrition books, including The Journey Through Cancer: Healing and Transforming the Whole Person, which was recommended by Sangha. It outlines 7 stages of healing, ranging from medical to emotional to spiritual, and strikes a reasonable balance balance between standard and complementary alternative treatments (the author is an MD who's studied Eastern healing practices, including Chinese and Ayurvedic medicine). Unlike some of the books and websites I've been reading, it's presented in a way that's easy to digest - I read it in a day. I'd recommend it for anyone with cancer, especially those who could benefit from chemo and/or radiation but would prefer a more "natural" approach or who are scared that chemo sounds too toxic. If you'd like to get a sense of the book, go to the author's website, which has overviews, sample chapters, author interviews, etc.
One exercise he recommends is listing your goals for the coming year, so I'm going to spend some time thinking about that, especially details about how I can make some spiritual progress.
I can also recommend to everyone - not just cancer patients - The China Study: The Most Comprehensive Study of Nutrition Ever Conducted and the Startling Implications for Diet, Weight Loss and Long-term Health, which was "prescribed" by my naturopath. You might want to start with the later chapters, which give his nutritional recommendations and are easier to get through. The first chapters give the scientific basis for his recommendations and establish his credentials. There's more info at the book's website and a sample chapter in PDF form at
http://www.thechinastudy.com/PDFs/ChinaStudy_Excerpt.pdf
On my break I also had a burst of energy where I did some organizing and filing. As you can imagine, when you're fatigued, when you're spending a lot of time going to doctor appointments, and when you're trying to understand more about your disease and improve your health, less important things pile up - like the mail and other papers. I took some time to go through it and got a lot of it into folders. Still some more work to do there ... and on other fronts : )
As always, I want to sincerely thank you for your support and prayers.
Earlier this morning I had bloodwork done and met with a physician's assistant, Erin Shade, who examined me and asked lots of questions about how I've been feeling (in short, very good).
The chemo's working: my tumor marker CA-125 dropped again. That's very good news.
Now I'm in the hospital - back in room 1111 ! - getting chemo: 24 hours of IV Taxol, then a few hours of IP Cisplatin. You're welcome to come visit me in the hospital if you like: I'm at Swedish on "Pill Hill," in the SW wing. I should be here until tomorrow evening; if you need to ask for me, use my "real" name, "Meredith.
Next Fri I'll get a few hours of IP Taxol at the doctor's office. That will mark the halfway point for chemo, as I'm scheduled for 6 rounds in all.
I've been working my way through some cancer and nutrition books, including The Journey Through Cancer: Healing and Transforming the Whole Person, which was recommended by Sangha. It outlines 7 stages of healing, ranging from medical to emotional to spiritual, and strikes a reasonable balance balance between standard and complementary alternative treatments (the author is an MD who's studied Eastern healing practices, including Chinese and Ayurvedic medicine). Unlike some of the books and websites I've been reading, it's presented in a way that's easy to digest - I read it in a day. I'd recommend it for anyone with cancer, especially those who could benefit from chemo and/or radiation but would prefer a more "natural" approach or who are scared that chemo sounds too toxic. If you'd like to get a sense of the book, go to the author's website, which has overviews, sample chapters, author interviews, etc.
One exercise he recommends is listing your goals for the coming year, so I'm going to spend some time thinking about that, especially details about how I can make some spiritual progress.
I can also recommend to everyone - not just cancer patients - The China Study: The Most Comprehensive Study of Nutrition Ever Conducted and the Startling Implications for Diet, Weight Loss and Long-term Health, which was "prescribed" by my naturopath. You might want to start with the later chapters, which give his nutritional recommendations and are easier to get through. The first chapters give the scientific basis for his recommendations and establish his credentials. There's more info at the book's website and a sample chapter in PDF form at
http://www.thechinastudy.com/PDFs/ChinaStudy_Excerpt.pdf
On my break I also had a burst of energy where I did some organizing and filing. As you can imagine, when you're fatigued, when you're spending a lot of time going to doctor appointments, and when you're trying to understand more about your disease and improve your health, less important things pile up - like the mail and other papers. I took some time to go through it and got a lot of it into folders. Still some more work to do there ... and on other fronts : )
As always, I want to sincerely thank you for your support and prayers.
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