Dear friends,
Just a very quick update on Mimi. Monday she had a rough day with some breakthrough nausea, discomfort and pain. It had been quite a hectic weekend with a visit from Kadam Lucy, then all the coming and going with the post-festival review, so probably the setback was (at least in part) due to that. I'm happy to report that as of yesterday Mimi's feeling much better! Thanks for your continued prayers and support.
Mimi's health setback was a wake-up call for those of caring for her, and we realized that it was past time to order the hospital bed. Yesterday we had a crew of muscular sangha here to help move the queen-sized bed out of the bedroom, to be replaced by the new bed delivered soon after by the local hospital supply company. So much kindness! Mimi is now comfortably ensconced in a bed that has adjustable height for ease of entering and exiting, as well as a raisable head that makes it easier for her to read and eat. Even the foot of the bed can be raised! Soon she'll be levitating ;)
It's been such an inspiration to quote Mimi in past blog posts, and now the spotlight is turned on you, dear readers! Here are some of your kind words to and about Mimi over the last few years in your blog comments when she was posting about her cancer diagnoses and treatments...
You are the bee's knees, Mimi. - Kelsang R
Thanks for your inspiring blog, I think of you every day in my prayers. - LK
You look great, the power of prayers and faith. - BH
Lots of love and prayers to you Mimi... May Medicine Buddha bless your body and mind. - LM
You are so amazing and inspiring. May you realize the union of the two truths .. may we all! - TC
You are safe in Venerable Geshe-la's mandala and he'll be with you the whole way. - Kelsang L
You are in my thoughts and prayers. I love you, Mimi. - CI
I really like your blog and your spirit. - T
Sending love and prayer to you Mimi! - HC
I wish all of us could have this strength and determination every single moment in our lives. - M
You are a wonderful example. - KLJ
Hooray! You are brave! - UM
Love and blessings. - NJ
It's inspiring how you are transforming this condition and creating beautiful minds. - LB
Rejoicing! - SC
May everything be perfect for you all the time, and you always feel bright inside. - M
Praying for you, Mimi. May all the Buddhas bless your mind. - Anonymous
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."
Showing posts with label My health update. Show all posts
Showing posts with label My health update. Show all posts
Wednesday, August 24, 2016
Saturday, August 20, 2016
Mahamudra Dreaming
Hello friends,
This weekend we are receiving a review of the summer festival teachings on Mahamudra. Kadam Lucy just led us in a wonderful meditation on the emptiness of the self - naturally quotes from some of Mimi's earlier blog posts on emptiness are in order. Follow the links if you'd like to read the entire post (recommended).
She posted in 2012 about a teaching that Gen-la Dekyong had given at summer festival that year. Gen-la mentioned that she had mistaken a dead brown leaf blown by the wind for a little mouse scurrying across the yard. Mimi says about hearing this story, "I was thinking that I didn't have this kind of mistaken appearance very often, but then I soon found two examples: I saw a bowl with a curled-up banana skin as sliced lemons, and a small stick as a thin black slug like the one that I'd seen earlier that day. Because we have so much faith in what we see, recognizing these mistakes helps undercut that confidence and helps lead us to understanding subtle mistaken appearance, believing that the things we normally perceive truly exist."
Also from 2012: "Years ago at an offsite emptiness retreat on Vashon Island, my first Teacher described our involvement with objects we see as being like a dancer and their dance: There is no dance without the dancer. There is no object without a mind perceiving the object. "It takes two to tango," as the expression goes : ) "
Who knew Mimi was a poet?! In this post during election season 2012 entitled "Lies" she shares a bit of emptiness wisdom in poetry form, then ends the post by saying, "And you thought I was going to write about the election, didn't you? : ) "
Finally, from summer of last year, she shares this story in a dream she had: "In the dream, a bunch of Sangha friends came to my house and sang chanted prayers and recited the Heart Sutra. It was glorious. Obstacles were definitely removed, blessings definitely received. A person called Mel had apparently organized it all and played DJ. All the Buddhas were there, with the female wisdom Buddha Prajnaparamita in the starring role... Even though it was hot, everyone seemed to go away even happier than they arrived."
This last post especially touched my mind because, well, it's hot again :) and Buddha Prajnaparamita is still in the starring role :D. Mimi had a visit from Kadam Lucy yesterday, which I think was very meaningful to her. Kind, wonderful friends are spending time at the house this weekend so that Richard can attend the review teachings at the temple. Health-wise, Mimi's still in the phase of gradual decline, no major changes. She's still fatigued, still has a pretty good appetite, a bit of occasional nausea when she overexerts herself. For those of you who have been looking forward to regular posts, I'm going to hold off posting further until there's a more significant change in Mimi's condition. So if you don't hear anything for a while, be assured that things are continuing along here as they have been for a while.
With love,
Boswell
rebecca-dot-lafond-at-gmail-dot-com
This weekend we are receiving a review of the summer festival teachings on Mahamudra. Kadam Lucy just led us in a wonderful meditation on the emptiness of the self - naturally quotes from some of Mimi's earlier blog posts on emptiness are in order. Follow the links if you'd like to read the entire post (recommended).
She posted in 2012 about a teaching that Gen-la Dekyong had given at summer festival that year. Gen-la mentioned that she had mistaken a dead brown leaf blown by the wind for a little mouse scurrying across the yard. Mimi says about hearing this story, "I was thinking that I didn't have this kind of mistaken appearance very often, but then I soon found two examples: I saw a bowl with a curled-up banana skin as sliced lemons, and a small stick as a thin black slug like the one that I'd seen earlier that day. Because we have so much faith in what we see, recognizing these mistakes helps undercut that confidence and helps lead us to understanding subtle mistaken appearance, believing that the things we normally perceive truly exist."
Also from 2012: "Years ago at an offsite emptiness retreat on Vashon Island, my first Teacher described our involvement with objects we see as being like a dancer and their dance: There is no dance without the dancer. There is no object without a mind perceiving the object. "It takes two to tango," as the expression goes : ) "
Who knew Mimi was a poet?! In this post during election season 2012 entitled "Lies" she shares a bit of emptiness wisdom in poetry form, then ends the post by saying, "And you thought I was going to write about the election, didn't you? : ) "
Finally, from summer of last year, she shares this story in a dream she had: "In the dream, a bunch of Sangha friends came to my house and sang chanted prayers and recited the Heart Sutra. It was glorious. Obstacles were definitely removed, blessings definitely received. A person called Mel had apparently organized it all and played DJ. All the Buddhas were there, with the female wisdom Buddha Prajnaparamita in the starring role... Even though it was hot, everyone seemed to go away even happier than they arrived."
This last post especially touched my mind because, well, it's hot again :) and Buddha Prajnaparamita is still in the starring role :D. Mimi had a visit from Kadam Lucy yesterday, which I think was very meaningful to her. Kind, wonderful friends are spending time at the house this weekend so that Richard can attend the review teachings at the temple. Health-wise, Mimi's still in the phase of gradual decline, no major changes. She's still fatigued, still has a pretty good appetite, a bit of occasional nausea when she overexerts herself. For those of you who have been looking forward to regular posts, I'm going to hold off posting further until there's a more significant change in Mimi's condition. So if you don't hear anything for a while, be assured that things are continuing along here as they have been for a while.
With love,
Boswell
rebecca-dot-lafond-at-gmail-dot-com
Labels:
Emptiness,
Mahamudra,
My health update
Wednesday, August 3, 2016
Going Inward
Dear friends,
There hasn't been much change since my last post, but I thought I'd offer this update nonetheless. Mimi's dad Bob and stepmom Marilyn are here visiting this week; sister-in-law Vicki and niece Lizzie arrive on Friday. Mimi's energy and appetite are still up and down, and she's requested us not to add any further visitors to her calendar for the time being. She spends a lot of time resting between visits - the amount of time seems to increase gradually each day. This, according to the information provided by hospice, is to be expected. In addition to the physical need for more rest, "the dying person begins to withdraw from the world and do the important work of processing one's life." (Paraphrased from the Barbara Karnes booklet I mentioned in the previous post.) So we don't expect Mimi to try harder to interact or push herself to have more energy. She doesn't expect this of herself either. I've been enjoying looking at Mimi's previous blog posts about her meditative experience, and here's something from 2012: "For ordinary activities we're usually told - and we tell ourselves - we need to try harder. But years ago I learned from a young woman who attended KMC NY to try softer. I'm not entirely sure what that means, but I find it beautiful and enjoy contemplating it." So imagine with me that Mimi is absorbed in trying softer, even in the midst of visits with family, friends and hospice personnel. (In a strange twist of Boswell-scheduling, we had eight people at once in Mimi and Richard's small house today. Even as I write this post, Mimi is resting on the sofa while Dad and Marilyn visit with Susan in the dining area and Liz chats with Richard in the kitchen. The hospice social worker just departed.) It's a pleasure and an honor to abide with Mimi at this time, and as she says in a reference to the quotable cult movie The Big Lebowski, "I tell myself the Dudette Abides...or tries to." I hope you all have a similarly fun and inspiring experience with abiding.
With love,
Boswell
(rebecca-dot-lafond-at-gmail.com)
There hasn't been much change since my last post, but I thought I'd offer this update nonetheless. Mimi's dad Bob and stepmom Marilyn are here visiting this week; sister-in-law Vicki and niece Lizzie arrive on Friday. Mimi's energy and appetite are still up and down, and she's requested us not to add any further visitors to her calendar for the time being. She spends a lot of time resting between visits - the amount of time seems to increase gradually each day. This, according to the information provided by hospice, is to be expected. In addition to the physical need for more rest, "the dying person begins to withdraw from the world and do the important work of processing one's life." (Paraphrased from the Barbara Karnes booklet I mentioned in the previous post.) So we don't expect Mimi to try harder to interact or push herself to have more energy. She doesn't expect this of herself either. I've been enjoying looking at Mimi's previous blog posts about her meditative experience, and here's something from 2012: "For ordinary activities we're usually told - and we tell ourselves - we need to try harder. But years ago I learned from a young woman who attended KMC NY to try softer. I'm not entirely sure what that means, but I find it beautiful and enjoy contemplating it." So imagine with me that Mimi is absorbed in trying softer, even in the midst of visits with family, friends and hospice personnel. (In a strange twist of Boswell-scheduling, we had eight people at once in Mimi and Richard's small house today. Even as I write this post, Mimi is resting on the sofa while Dad and Marilyn visit with Susan in the dining area and Liz chats with Richard in the kitchen. The hospice social worker just departed.) It's a pleasure and an honor to abide with Mimi at this time, and as she says in a reference to the quotable cult movie The Big Lebowski, "I tell myself the Dudette Abides...or tries to." I hope you all have a similarly fun and inspiring experience with abiding.
With love,
Boswell
(rebecca-dot-lafond-at-gmail.com)
Labels:
My health update
Friday, July 15, 2016
To Contentment and Beyond
Hello Friends of Mimi,
Boswell here. All of your love and wishes are coming through and are deeply appreciated. Mimi is still looking over her email occasionally so she has seen your kind messages. In Mimi's own words from a post last April: "I deeply appreciate your prayers for me. You can see that they work. Makes it so easy to have faith." As always, please feel free to add a comment to this blog post, send a reply message to Mimi, or email me at rebecca-dot-lafond-at-gmail.com.
Just wanted to give you an update on Mimi's current state of health. As a background, here's a wrap-up of the last 7 years of Mimi's cancer adventure in one sentence: she was diagnosed with ovarian cancer and underwent treatment; has had chemo on and off to address recurring abdominal tumors; had a metastasis to the brain a few years ago and was treated with surgery, radiation and chemo; and was most recently advised by her doctor that curative care is no longer an option. And so she is now on hospice and preparing for a peaceful death. The tumors in Mimi's abdomen are growing noticeably, and a recent brain scan indicates that she has cancerous lesions on the meninges of the brain, also known as leptomeningeal carcinomatosis, carcinomatous meningitis, and a host of other long-syllabled medical terms. The brain cancer causes inflammation, so Mimi is once again taking a steroid called dexamethasone to keep the swelling down. She's written about taking this medication in previous blog posts - it's the one that makes her really talkative, energetic and HUNGRY! We can maybe consider these side effects to be a blessing as she has been receiving many visitors from near and far, and she has sufficient energy to engage in conversation. She's also eating really well which is helping her to keep up her strength. Many friends are bringing food to share during their visits - in fact, we're expecting Sally with dinner any minute now. It's a gift for Mimi (and for us all) for her to be able to share these moments with friends and family. The last few days have brought a poetry reading (Lynn Ann), an industrious cleaning of the master bedroom (Linda L), a tidying up of the garden (Linda S), and many kind and friendly ears to listen to Mimi's thoughts about the end of her life (Heather, Brian, Laurie, Eve, Kit, Noreen). As the weekend approaches, her social calendar continues to be full and family arrives on Monday morning.
Anyway, to continue the "state of the union" regarding Mimi's current health situation, she's on a transdermal patch to control pain, two medications for nausea, and a variety of other meds to deal with the side effects of the main medications. As we all know from our interactions with Mimi, she's an amazing example of practicing contentment in the face of adversity. In a post from January of this year she wrote, "Thankfully I know my body is *not* "me," so I am still happy … and hope you are too." It's an inspiration to witness how her positive habits of mind continue to sustain her happiness, even as she encounters these challenges. May we all have such courage and strength!
The brain cancer, the many years of chemotherapy drugs, and the current medications are causing unavoidable cognitive decline. About this phenomenon, she said in a post from June 2015 that, "my mind is good, my brain not so much." She seems to lose a little bit of energy each day and yet she's a gracious hostess, always looking after the comfort of her guests. I'll end this post with her expression of gratitude from a couple of years ago:
"Thank you, Buddha.
Thank you, Sangha.
Thank you to everyone who's been making prayers and offering good thoughts."
Boswell here. All of your love and wishes are coming through and are deeply appreciated. Mimi is still looking over her email occasionally so she has seen your kind messages. In Mimi's own words from a post last April: "I deeply appreciate your prayers for me. You can see that they work. Makes it so easy to have faith." As always, please feel free to add a comment to this blog post, send a reply message to Mimi, or email me at rebecca-dot-lafond-at-gmail.com.
Just wanted to give you an update on Mimi's current state of health. As a background, here's a wrap-up of the last 7 years of Mimi's cancer adventure in one sentence: she was diagnosed with ovarian cancer and underwent treatment; has had chemo on and off to address recurring abdominal tumors; had a metastasis to the brain a few years ago and was treated with surgery, radiation and chemo; and was most recently advised by her doctor that curative care is no longer an option. And so she is now on hospice and preparing for a peaceful death. The tumors in Mimi's abdomen are growing noticeably, and a recent brain scan indicates that she has cancerous lesions on the meninges of the brain, also known as leptomeningeal carcinomatosis, carcinomatous meningitis, and a host of other long-syllabled medical terms. The brain cancer causes inflammation, so Mimi is once again taking a steroid called dexamethasone to keep the swelling down. She's written about taking this medication in previous blog posts - it's the one that makes her really talkative, energetic and HUNGRY! We can maybe consider these side effects to be a blessing as she has been receiving many visitors from near and far, and she has sufficient energy to engage in conversation. She's also eating really well which is helping her to keep up her strength. Many friends are bringing food to share during their visits - in fact, we're expecting Sally with dinner any minute now. It's a gift for Mimi (and for us all) for her to be able to share these moments with friends and family. The last few days have brought a poetry reading (Lynn Ann), an industrious cleaning of the master bedroom (Linda L), a tidying up of the garden (Linda S), and many kind and friendly ears to listen to Mimi's thoughts about the end of her life (Heather, Brian, Laurie, Eve, Kit, Noreen). As the weekend approaches, her social calendar continues to be full and family arrives on Monday morning.
Anyway, to continue the "state of the union" regarding Mimi's current health situation, she's on a transdermal patch to control pain, two medications for nausea, and a variety of other meds to deal with the side effects of the main medications. As we all know from our interactions with Mimi, she's an amazing example of practicing contentment in the face of adversity. In a post from January of this year she wrote, "Thankfully I know my body is *not* "me," so I am still happy … and hope you are too." It's an inspiration to witness how her positive habits of mind continue to sustain her happiness, even as she encounters these challenges. May we all have such courage and strength!
The brain cancer, the many years of chemotherapy drugs, and the current medications are causing unavoidable cognitive decline. About this phenomenon, she said in a post from June 2015 that, "my mind is good, my brain not so much." She seems to lose a little bit of energy each day and yet she's a gracious hostess, always looking after the comfort of her guests. I'll end this post with her expression of gratitude from a couple of years ago:
"Thank you, Buddha.
Thank you, Sangha.
Thank you to everyone who's been making prayers and offering good thoughts."
Labels:
Adversity,
Death,
Emptiness,
Faith,
My health update
Tuesday, July 12, 2016
In the Spirit of Family
Hi everyone,
Rebecca (aka Boswell) here. Thank you all so much for your emails and blog comments to Mimi. Some of you have received replies from her in the last couple of days. Sunday brought a harrowing trip to the emergency room to deal with unexpected and brutal head pain, combined with nausea and pretty much constant vomiting. In the face of that recent challenge, Mimi has kept a strong interest in maintaining connections with her Kadampa family and all her friends around the world. Please keep your messages coming - you can comment here, email Mimi directly or send messages to my email address rebecca-dot-lafond-at-gmail.com.
The excellent and expert care that Mimi received at the Swedish Ballard ER on Sunday contributed to a surprisingly pain-free, festive and fun Monday. It was a day full of love and life. Mimi's friend Kate is about halfway through her 10-day visit and has been providing invaluable support in the form of organizing, cleaning, shopping and attending to all kinds of tasks and decisions. Yesterday was also punctuated with early visits from friends Liz and Gayle, then fly-bys from Ellen and Katherine. Mimi has been having so much fun engaging her friends in conversation and jokes! (One of her medications has the bonus side effect of making her very talkative, giving us the opportunity to enjoy her quirky, one-of-a-kind humor.) One of Mimi's many passions is literature, and she has a wonderful collection of classic novels. She's hoping that all of her friends and family who visit have an opportunity to look over her "please take" books and choose one or more that appeal to them. (I heard that Katherine left with a few ;) The evening was a festival of pure delight with delicious homemade gnocchi from Marie, accompanied by lovely music from Mel. We were singing, reminiscing and enjoying the atmosphere of love and family, when Richard was inspired to play this song by Dar Williams. "Let your love cover me / Like a pair of angel wings / You are my family / You are my family." There were more than a few happy tears, please give the song a listen if you have a chance. You might not have been here in person, but because your love for Mimi is so strong and present, you were definitely here in spirit.
Today started with a visit from Marsha who chatted with Mimi for a while then went out to the backyard with Richard to pick the abundance of greens that are taking over the garden. Some of these fresh greens contributed to our lunch - yum! The afternoon took on a business-like atmosphere, although there were still plenty of jokes - we were visited by an intake nurse from Providence Hospice. Hospice is an amazing service and has many hidden good qualities. It's meant for people with "life-limiting illnesses who are no longer seeking curative treatment" (quoted, not quite exactly, from the FAQs at the link above). Many people think of hospice as applicable only during the final days of life, and only meant to keep the patient as comfortable as possible, but it's so much more than that. Hospice provides weeks and even months of nursing support, hospital equipment and supplies delivered to the home, medications, doctor liaison services, home health aides, social services including end-of-life decision assistance, volunteer house-cleaners and errand-runners, and chaplain visits should the patient choose to have them. It's a system of comprehensive support that allows the patient to direct, as much as possible, the circumstances surrounding their own death. Hospice care is designed to make the death process as peaceful as possible for the dying person, which according to Buddhist practice, is crucial for the process of transference of consciousness. Hospice also provides invaluable support and guidance to the friends and family of the patient - the compassion and love are shining right through the booklets and documents we received! And, get this, hospice services are covered 100% by Medicare and by most private health care plans. The support of hospice care is going to be such a blessing in the coming days and weeks. The first delivery of supplies has already arrived at the front door.
The next few days will bring more visits with Seattle friends, Mimi's sister flying in from Florida accompanied by Richard's brother and sister-in-law, and Kadam Heather visiting from Portland. What a loving extended family we have! Thank you for being part of it.
Rebecca (aka Boswell) here. Thank you all so much for your emails and blog comments to Mimi. Some of you have received replies from her in the last couple of days. Sunday brought a harrowing trip to the emergency room to deal with unexpected and brutal head pain, combined with nausea and pretty much constant vomiting. In the face of that recent challenge, Mimi has kept a strong interest in maintaining connections with her Kadampa family and all her friends around the world. Please keep your messages coming - you can comment here, email Mimi directly or send messages to my email address rebecca-dot-lafond-at-gmail.com.
The excellent and expert care that Mimi received at the Swedish Ballard ER on Sunday contributed to a surprisingly pain-free, festive and fun Monday. It was a day full of love and life. Mimi's friend Kate is about halfway through her 10-day visit and has been providing invaluable support in the form of organizing, cleaning, shopping and attending to all kinds of tasks and decisions. Yesterday was also punctuated with early visits from friends Liz and Gayle, then fly-bys from Ellen and Katherine. Mimi has been having so much fun engaging her friends in conversation and jokes! (One of her medications has the bonus side effect of making her very talkative, giving us the opportunity to enjoy her quirky, one-of-a-kind humor.) One of Mimi's many passions is literature, and she has a wonderful collection of classic novels. She's hoping that all of her friends and family who visit have an opportunity to look over her "please take" books and choose one or more that appeal to them. (I heard that Katherine left with a few ;) The evening was a festival of pure delight with delicious homemade gnocchi from Marie, accompanied by lovely music from Mel. We were singing, reminiscing and enjoying the atmosphere of love and family, when Richard was inspired to play this song by Dar Williams. "Let your love cover me / Like a pair of angel wings / You are my family / You are my family." There were more than a few happy tears, please give the song a listen if you have a chance. You might not have been here in person, but because your love for Mimi is so strong and present, you were definitely here in spirit.
Today started with a visit from Marsha who chatted with Mimi for a while then went out to the backyard with Richard to pick the abundance of greens that are taking over the garden. Some of these fresh greens contributed to our lunch - yum! The afternoon took on a business-like atmosphere, although there were still plenty of jokes - we were visited by an intake nurse from Providence Hospice. Hospice is an amazing service and has many hidden good qualities. It's meant for people with "life-limiting illnesses who are no longer seeking curative treatment" (quoted, not quite exactly, from the FAQs at the link above). Many people think of hospice as applicable only during the final days of life, and only meant to keep the patient as comfortable as possible, but it's so much more than that. Hospice provides weeks and even months of nursing support, hospital equipment and supplies delivered to the home, medications, doctor liaison services, home health aides, social services including end-of-life decision assistance, volunteer house-cleaners and errand-runners, and chaplain visits should the patient choose to have them. It's a system of comprehensive support that allows the patient to direct, as much as possible, the circumstances surrounding their own death. Hospice care is designed to make the death process as peaceful as possible for the dying person, which according to Buddhist practice, is crucial for the process of transference of consciousness. Hospice also provides invaluable support and guidance to the friends and family of the patient - the compassion and love are shining right through the booklets and documents we received! And, get this, hospice services are covered 100% by Medicare and by most private health care plans. The support of hospice care is going to be such a blessing in the coming days and weeks. The first delivery of supplies has already arrived at the front door.
The next few days will bring more visits with Seattle friends, Mimi's sister flying in from Florida accompanied by Richard's brother and sister-in-law, and Kadam Heather visiting from Portland. What a loving extended family we have! Thank you for being part of it.
Labels:
Cherishing Others,
My health update
Monday, July 11, 2016
Introducing Rebecca LaFond
of whom I am very fond ...
She is my "Boswell"
She's going to be writing updates if you want health updates.
----------------------
Hi all, Rebecca here. Mimi wrote the above a couple of days ago when she was feeling fairly energetic. Since then she's had a trip to the ER to deal with pain and nausea, is now at home resting comfortably. She will probably be going into hospice this week, and has the intention to stay at home. Mimi is looking forward to receiving visits from local friends and from far away friends if you'd like to make arrangements. Please be sure to email me at the address below if you'd like to plan a visit - emails to Mimi's and Richard's email addresses are less likely to be attended to. I will pass along your email wishes and comments on this blog to Mimi, so please keep them coming.
Please email me with YOUR NAME in the subject line if you'd like to schedule a visit. rebecca-dot-lafond-at-gmail.com
As you know, Mimi has a deep interest in English literature and is very articulate and wonderful with metaphor - unfortunately for those of you reading this blog, I'm of a more scientific, linear nature. As an insight into Mimi's mind, see this link to see what she means by calling me her "Boswell". He's an 18th century writer who documented his subject's doings continuously, and made them look good in the process. It's hard for me not to make Mimi look good - she's such an inspiration! I hope you all get a chance to interact with her in some way in the upcoming days.
She is my "Boswell"
She's going to be writing updates if you want health updates.
----------------------
Hi all, Rebecca here. Mimi wrote the above a couple of days ago when she was feeling fairly energetic. Since then she's had a trip to the ER to deal with pain and nausea, is now at home resting comfortably. She will probably be going into hospice this week, and has the intention to stay at home. Mimi is looking forward to receiving visits from local friends and from far away friends if you'd like to make arrangements. Please be sure to email me at the address below if you'd like to plan a visit - emails to Mimi's and Richard's email addresses are less likely to be attended to. I will pass along your email wishes and comments on this blog to Mimi, so please keep them coming.
Please email me with YOUR NAME in the subject line if you'd like to schedule a visit. rebecca-dot-lafond-at-gmail.com
As you know, Mimi has a deep interest in English literature and is very articulate and wonderful with metaphor - unfortunately for those of you reading this blog, I'm of a more scientific, linear nature. As an insight into Mimi's mind, see this link to see what she means by calling me her "Boswell". He's an 18th century writer who documented his subject's doings continuously, and made them look good in the process. It's hard for me not to make Mimi look good - she's such an inspiration! I hope you all get a chance to interact with her in some way in the upcoming days.
Labels:
My health update
Friday, July 8, 2016
Let It Snow ....
Why is that out-of-season song in my head at the moment? I DO have a place to go - an important place - I just don't know yet where.
This former English major has also been thinking about those lines from T.S. Eliot's poem The Love Song of Alfred Proofrock, " ... and in short, I was afraid." But actually I'm not. ...
Maybe just too dumb for that : )
Something better than nothing? Or are you one of those "no news is good news" folks?
(Sorry.)
Maybe soon a more reasonable person will be posting updates here.
Mainly I wanted to thank you all for the outpouring of support and love, to which I cannot reply with what you deserve. This is the best I can do right now. Accept ... or unsubscribe : )
~M
This former English major has also been thinking about those lines from T.S. Eliot's poem The Love Song of Alfred Proofrock, " ... and in short, I was afraid." But actually I'm not. ...
Maybe just too dumb for that : )
Something better than nothing? Or are you one of those "no news is good news" folks?
(Sorry.)
Maybe soon a more reasonable person will be posting updates here.
Mainly I wanted to thank you all for the outpouring of support and love, to which I cannot reply with what you deserve. This is the best I can do right now. Accept ... or unsubscribe : )
~M
Labels:
My health update
Wednesday, July 6, 2016
The Beginning ...
... of the End
You may remember one of my favorite jokes, by the deadpan comedian Steven Wright, who says, "I plan to live forever ... [pause] ... so far, so good."
Well, that plan isn't going to work much longer for me.
Best to use this post to generate compassion - for everyone, which early on I learned also includes me (that is, you!). From there, as Buddha teaches, widen your scope from those closest and dearest to you - say, family and friends - eventually to all living beings, and not just humans and furry animals.
I find that reading or hearing about intense suffering around the world, day by day in the news, really helps. Looking back at history also helps. Gives me a broader view, for one.
Mostly my cancer story over the past 7+ years is filled with extraordinary surprises that I attribute to Buddhism and to your support and prayers. I see even conventional doctors as a form of Medicine Buddha, and their treatments as medicines that ultimately come from him. All those special medical specialists have been amazed when I've defied their expectations again and again.
But last week's Brain MRI scan wasn't what would usually be described as good. I'm getting closer to my actual "expiration date." Mostly things are headed downward, probably faster than in the past. Happy to supply details if you want them and I can (increasing brain problems have prevented me for updating you as often as I'd like).
Please think especially of R, who is so important to me, in far more ways than I can describe here. It's easy to see the karma in his connection to me. After all, no normal person would be spending so much time with me, over years and years : )
He has it much worse than I do: I'm like the person going on a trip, having to leave other loved ones at home.
Only this time, in a while, you won't see or hear me again in this form. I'm like that actor playing a role for a time, then moving on to another role, on a different stage - hopefully the gorgeous one of a heavenly place, such as Keajra, where there is no suffering, only goodness for all.
I'm in a good place, deeply grateful for all the kinds of support. Glad to know that my body (including my brain) has a relationship to my mind, but that my heart (or "soul" if you like) will be going onward. Again, I'll say that Buddhist ideas are deeply comforting to me. Notably karma and death, of all things!
Peace. Love and Compassion to All,
Mimi
You may remember one of my favorite jokes, by the deadpan comedian Steven Wright, who says, "I plan to live forever ... [pause] ... so far, so good."
Well, that plan isn't going to work much longer for me.
Best to use this post to generate compassion - for everyone, which early on I learned also includes me (that is, you!). From there, as Buddha teaches, widen your scope from those closest and dearest to you - say, family and friends - eventually to all living beings, and not just humans and furry animals.
I find that reading or hearing about intense suffering around the world, day by day in the news, really helps. Looking back at history also helps. Gives me a broader view, for one.
Mostly my cancer story over the past 7+ years is filled with extraordinary surprises that I attribute to Buddhism and to your support and prayers. I see even conventional doctors as a form of Medicine Buddha, and their treatments as medicines that ultimately come from him. All those special medical specialists have been amazed when I've defied their expectations again and again.
But last week's Brain MRI scan wasn't what would usually be described as good. I'm getting closer to my actual "expiration date." Mostly things are headed downward, probably faster than in the past. Happy to supply details if you want them and I can (increasing brain problems have prevented me for updating you as often as I'd like).
Please think especially of R, who is so important to me, in far more ways than I can describe here. It's easy to see the karma in his connection to me. After all, no normal person would be spending so much time with me, over years and years : )
He has it much worse than I do: I'm like the person going on a trip, having to leave other loved ones at home.
Only this time, in a while, you won't see or hear me again in this form. I'm like that actor playing a role for a time, then moving on to another role, on a different stage - hopefully the gorgeous one of a heavenly place, such as Keajra, where there is no suffering, only goodness for all.
I'm in a good place, deeply grateful for all the kinds of support. Glad to know that my body (including my brain) has a relationship to my mind, but that my heart (or "soul" if you like) will be going onward. Again, I'll say that Buddhist ideas are deeply comforting to me. Notably karma and death, of all things!
Peace. Love and Compassion to All,
Mimi
Labels:
My health update
Saturday, May 14, 2016
Surprises
Hello all.
I got back from US Festival and visits with various family a few days ago.
One of the many highlights of Gen-la Dekyong's teachings on the life of Buddha Shakyamuni was a way for us to test our renunciation: Are we surprised or even shocked when something goes wrong? Do we really understand that the nature of samsara is constant suffering? If we do, then anything negative, strange or unexpected that happens should be considered normal, par for the course. You can consider the U.S. presidential race as one example.
I knew that test told me I still had work to do, especially when I got my latest tumor marker number. After just 2 treatments of the immunotherapy drug Opdivo before the trip, it had gone down 100 points. I was also looking better - according to various folks, including my oncologist - and feeling better, with a bit more energy. So I'll admit I was very surprised at yesterday's result, where my marker went up 200+ points.
I'm not there yet for renunciation, but not discouraged either. As Gen Rigpa told us in his Introduction Friday night, we should be like a toddler who falls when trying to walk but keeps getting up and trying again.
R & I thought we had a green light to go to Summer Festival, via Iceland, but the light is now back at yellow.
Please make prayers that I - and everyone else with the wish - can be at Manjushri KMC to receive the transmission of the Oral Instructions of Mahamudra.
Many thanks,
M.
I got back from US Festival and visits with various family a few days ago.
One of the many highlights of Gen-la Dekyong's teachings on the life of Buddha Shakyamuni was a way for us to test our renunciation: Are we surprised or even shocked when something goes wrong? Do we really understand that the nature of samsara is constant suffering? If we do, then anything negative, strange or unexpected that happens should be considered normal, par for the course. You can consider the U.S. presidential race as one example.
I knew that test told me I still had work to do, especially when I got my latest tumor marker number. After just 2 treatments of the immunotherapy drug Opdivo before the trip, it had gone down 100 points. I was also looking better - according to various folks, including my oncologist - and feeling better, with a bit more energy. So I'll admit I was very surprised at yesterday's result, where my marker went up 200+ points.
I'm not there yet for renunciation, but not discouraged either. As Gen Rigpa told us in his Introduction Friday night, we should be like a toddler who falls when trying to walk but keeps getting up and trying again.
R & I thought we had a green light to go to Summer Festival, via Iceland, but the light is now back at yellow.
Please make prayers that I - and everyone else with the wish - can be at Manjushri KMC to receive the transmission of the Oral Instructions of Mahamudra.
Many thanks,
M.
Labels:
Festival,
My health update
Saturday, April 9, 2016
Where I've Landed
After a few weeks of medical tests, scans & appointments, followed by a shorter period of limbo, I'm ready to update you about the latest phase of my treatments.
Because of the extraordinary, indefatigable efforts by my oncologist Dr K, I am now on the immunotherapy drug Opdivo, which after just 2 infusions has already lowered my cancer marker by more than 100. That drug has been FDA-approved for some cancers, but I am getting it as "compassionate care" from its maker, Bristol Meyers Squibb, at no cost.
As with other targeted therapies, it has almost no side effects, because it can distinguish between healthy tissue and the other kind. I do have a bit of lingering fatigue, which I'm inclined to believe is from the 25 pelvic radiations I recently had over 5 weeks.
Soon I will also be getting 5 CyberKnife radiations to the very small bit of my brain where a tumor has regrown.
Just like the skies in Seattle, my health forecast looks like sunny days ahead ... so sunny that at the end of the month I am going to U.S. Festival and then visiting family.
Yesterday I registered for the very special Summer Festival in England.
Thank you so much for your ongoing prayers and support, which have brought me where I am now, my 7-year cancerversary. Celebrate!
Because of the extraordinary, indefatigable efforts by my oncologist Dr K, I am now on the immunotherapy drug Opdivo, which after just 2 infusions has already lowered my cancer marker by more than 100. That drug has been FDA-approved for some cancers, but I am getting it as "compassionate care" from its maker, Bristol Meyers Squibb, at no cost.
As with other targeted therapies, it has almost no side effects, because it can distinguish between healthy tissue and the other kind. I do have a bit of lingering fatigue, which I'm inclined to believe is from the 25 pelvic radiations I recently had over 5 weeks.
Soon I will also be getting 5 CyberKnife radiations to the very small bit of my brain where a tumor has regrown.
Just like the skies in Seattle, my health forecast looks like sunny days ahead ... so sunny that at the end of the month I am going to U.S. Festival and then visiting family.
Yesterday I registered for the very special Summer Festival in England.
Thank you so much for your ongoing prayers and support, which have brought me where I am now, my 7-year cancerversary. Celebrate!
Labels:
My health update
Saturday, February 20, 2016
good results so far
Hello Friends!
I found out last night that my CA-125 marker for ovarian cancer went down, from 482 two weeks ago to 428. I believe that means the Topo chemo is (finally) working.
Do you think it's a coincidence that R & I - and lots of other NW Sangha - went to the Western Canada Dharma Celebration with Gen-la Khyenrab and Gen Thekchen last weekend, for the empowerment of Avalokiteshvara, and teachings and meditations on the practices of him and powa?
So many precious insights to take away, including that the brain is the "organ of confusion," so we should put aside questions like whether we have really gotten the deceased to the Pure Land. What is "real" anyway, when everything is ultimately mere imputation?
Of course, that doesn't mean that we have blind faith. Buddhism encourages us all to personally investigate the teachings - to actively "interrogate" what Buddha says, through experiments in our daily lives (is this making me happier?, is this making my relationships better? for example); through deeply contemplating and meditating on the reasonings; and through recognizing the long history of Masters who are the source of this wisdom, starting with Buddha Shakyamuni.
Last Wed I started radiation too, to receive blessed lights to reduce or maybe even eliminate the tumor pressing on my bladder and causing incontinence. That treatment will be every weekday for at least 4 weeks.
Thankfully I have Sangha friends who will drive me - which gives us a good chance to talk. I see it as a nice way of relying on Sangha. I "ain't too proud to beg" when my driving is unsteady. Thank you Cecilia & Deb for the continuing rides to class, and to Susan, Jeff, Marsha, Mary, James and Marie, as well as other "players yet to be named" (as they say in baseball trades) who have driven me to & from medical appointments, none of which is ordinary.
For further tests, my regular brain MRI scan is Wed, Feb 24, and my torso CT is Mon, Feb 29, after which we will know more.
Thank you for your continuing support.
Prayers always appreciated. You keep me here.
Love,
Mimi
Labels:
My health update
Tuesday, January 19, 2016
A Long Overdue Update
Let’s
see … where was I?
SUMMARY
Last
you heard, I was still on Gemzar chemo. Since then I have moved to another one,
called Topotecan, because when the previous chemo had stopped doing its job, I
had to fire it. (My tumor marker shot up this Fall, and kept shooting up.)
I’ve
had 3 infusions of the Topo nectar now and will get a tumor-marker test this
week to see whether it’s working.
Thankfully I know my body is *not* "me," so I am still happy … and hope you are too.
Know that there can be various difficulties with you body that with training won't damage your state of mind. It's true!
SOME
DETAILS
At
the end of December I was in limbo, waiting to see if I could get on a
promising clinical trial (which didn’t open more slots) and then another one
(which seemed to dissolve, leaving no trace). Until I can find a good trial, I
am back on chemo.
On
this new Topo regime, I’ve had more side effects, which took me several days to
adjust to and figure out.
Acceptance
is a big part of my practice. There’s a lot I’d like to write about that, but
for now I will simply say it creates a space to understand where I am, and then
the room to move forward.
Now
I feel like I am back on my board, surfing those swells, rather than being
pounded by them.
Here's a slice of my life about medications:
In
ordinary terms it’s a lot easier because I now have routines for them. Yet they still take
up a surprising amount of time, on top of my existing routines: For example, I
have many pills, which have different dosages, to take at different times of
day, with and without meals or whenever. I have 7 different-colored pill containers
(holding pills of different colors, with white being especially popular), some
pill boxes by the bed, some by the kitchen; the newer ones with notes attached
about what they are and how to take them. It helps me to see when the box (a
day of the week) within the (pill)box is empty, to confirm I've already taken
that dose. That’s not including the “take as needed” prescriptions.
I
think I could teach a medicine-management workshop.
Does that all make
me a juggler? Not that anyone would want to watch. Hopefully another ball won't
be thrown in for a little while, while I finish mastering the current routine.
I think that's
everything for now. I will do my best to provide more frequent health updates,
because people keep asking for them
Love,
Mimi
Labels:
My health update
Wednesday, October 28, 2015
Vajrasattva in My Life
I had the great good fortune to attend Fall Festival in France. It was so good I don’t think even French has a word for it – it was beyond magnifique, suprême, extraordinaire …
The empowerment felt deeply powerful (again words fall short), the teachings so very profound. We learned to purify not just negativities, obstructions and downfalls, but also ordinary appearances and conceptions! For the memory-impaired like me, those last two get grouped under obstructions.
But one of the key points that keeps returning is, “I need to purify.” That means me, myself, the person known as “Mimi,” (the name itself reminding me who we’re talking about).
In the last teaching at Fall Fest, we were given specific examples of how we can integrate purification into our daily life, one of the hallmarks of Kadampa Buddhism’s practicality.
You probably know that the options for dealing with negative karma are either to clear them out with purification practice, or to face their results, suffering in one of its multitude of forms. If you don’t get angry when there’s some adversity, mild or major, those ripened potentials will be purified. However, habitually we get disturbed, irritated, annoyed, rageful … which just repeats the process.
Sunday at the Temple I had a mild but dramatic experience of an eruption of my negative karma.
* To imagine what happened, pretend that you’re a female human, who of course comes with a female plumbing system (which my mom always cited as proof that God was a man).
Fill up a gallon jug at least halfway with water, although to really get the effect it should be a more impure substance. Thankfully I’m not talking about the other end of the plumbing system.
Head to a bathroom with the jug and start to get into position to release the liquid in your system, represented by the jug.
Before you’ve completely lowered your lower garment, start pouring the jug into your garment and around the toilet. A few moments later, more of the water will go where you intend, but a lot of it will have soaked those clothes. Continue pouring until the jug is empty.
My mind was calm, undoubtedly boosted by the weekend’s teachings, but also disappointed that I couldn’t attend Offering to the Spiritual Guide at the Temple, on Je Tsongkhapa Day, as planned, instead heading home to take a shower (which I think can be transformed into a purification practice if you use the four powers).
For perspective, it’s not that I haven’t experienced some mild, ongoing urinary incontinence, as apparently isn’t unusual for a woman my age (now 52, going on 82), probably exacerbated by cancer/chemo. But this was definitely “over the top.”
Update: As planned, I re-started chemo on Friday (delayed by the trip to France that my oncologist kindly supported). I’m back to the same drug I was on when my doctor stopped treatment in mid-June so that my body, especially my brain, could recover a bit from all the surgery, radiation and chemo I’ve had over 6+ years – on and off treatment but mostly on. That drug, “Gemzar,” mainly had fatigue as a side effect and was effective at reducing my tumors, so I am hopeful that will continue.
Yesterday I got the results of my cancer marker, which has leaped to the triple digits – not as bad as the quadruple digits at diagnosis, but far above the middle double digits I’ve had for years. Prayers appreciated.
* Pee S. Don’t try this at home.
The empowerment felt deeply powerful (again words fall short), the teachings so very profound. We learned to purify not just negativities, obstructions and downfalls, but also ordinary appearances and conceptions! For the memory-impaired like me, those last two get grouped under obstructions.
But one of the key points that keeps returning is, “I need to purify.” That means me, myself, the person known as “Mimi,” (the name itself reminding me who we’re talking about).
In the last teaching at Fall Fest, we were given specific examples of how we can integrate purification into our daily life, one of the hallmarks of Kadampa Buddhism’s practicality.
You probably know that the options for dealing with negative karma are either to clear them out with purification practice, or to face their results, suffering in one of its multitude of forms. If you don’t get angry when there’s some adversity, mild or major, those ripened potentials will be purified. However, habitually we get disturbed, irritated, annoyed, rageful … which just repeats the process.
Sunday at the Temple I had a mild but dramatic experience of an eruption of my negative karma.
* To imagine what happened, pretend that you’re a female human, who of course comes with a female plumbing system (which my mom always cited as proof that God was a man).
Fill up a gallon jug at least halfway with water, although to really get the effect it should be a more impure substance. Thankfully I’m not talking about the other end of the plumbing system.
Head to a bathroom with the jug and start to get into position to release the liquid in your system, represented by the jug.
Before you’ve completely lowered your lower garment, start pouring the jug into your garment and around the toilet. A few moments later, more of the water will go where you intend, but a lot of it will have soaked those clothes. Continue pouring until the jug is empty.
My mind was calm, undoubtedly boosted by the weekend’s teachings, but also disappointed that I couldn’t attend Offering to the Spiritual Guide at the Temple, on Je Tsongkhapa Day, as planned, instead heading home to take a shower (which I think can be transformed into a purification practice if you use the four powers).
For perspective, it’s not that I haven’t experienced some mild, ongoing urinary incontinence, as apparently isn’t unusual for a woman my age (now 52, going on 82), probably exacerbated by cancer/chemo. But this was definitely “over the top.”
Update: As planned, I re-started chemo on Friday (delayed by the trip to France that my oncologist kindly supported). I’m back to the same drug I was on when my doctor stopped treatment in mid-June so that my body, especially my brain, could recover a bit from all the surgery, radiation and chemo I’ve had over 6+ years – on and off treatment but mostly on. That drug, “Gemzar,” mainly had fatigue as a side effect and was effective at reducing my tumors, so I am hopeful that will continue.
Yesterday I got the results of my cancer marker, which has leaped to the triple digits – not as bad as the quadruple digits at diagnosis, but far above the middle double digits I’ve had for years. Prayers appreciated.
* Pee S. Don’t try this at home.
Labels:
Karma,
My health update,
Purifcation
Thursday, August 6, 2015
Working on Another Comeback
I am still on a break from chemo, having had a "stable" brain MRI a couple of weeks ago. Over the last 2 months off chemo, I've noticed improvements in my brain, such as better memory (a small notebook helps with that too). I also have more mental energy to be able to work on more than one project a day (whoo hoo - amazing, huh?). After a bigger day, I know I'll need to take off the next one. I continue to hope & pray that this improvement continues, until at some point I'll be back on chemo. Probably that will be the same chemo I was on, which didn't have too many side effects, but did add to the cumulative effects of chemo over 6+ years. That chemo, called Gemzar, was helping, but it didn't put me in remission - I'm only off chemo because my oncologist recognized I needed a break. I expect that when I'm on chemo again, in the next month or two or three, it will cause a bit more "brain damage", as one of my MDs called it. But my brain will be starting from a higher place.
Labels:
My health update
Tuesday, June 30, 2015
My Mind & My Brain
Executive Summary: My mind is good, my brain not so much.
An aside: Does that make you think about the relationship between the two? I believe I've written about that subject in a previous post.
Narrative: My tumor marker has been in the normal range for a few months, which made me hopeful that my CT scan (which my oncologist kindly scheduled 2 months from the previous one, whereas usually all my scans are 3 months out) would be so good that I could be off chemo for the summer. The CT was not bad - there are no new tumors - but a few existing ones have gotten slightly larger.
However, my brain has not been working well in various ways for some months now, and recently dipped below the line where I feel comfortable driving.
Upshot: My doctor recognized that, between the 20 whole-brain radiations I got in 2011 and all the chemo I've had over 6+ years, my brain needed a break, even though there's a higher risk that the tumors will get much larger or even metastasize without chemo. I'll be under close monitoring and will get my brain MRI in another month (3 months out), as usual. I'm very comfortable with this plan. I was already hoping the CT results would be good enough to get a bit of a break, even if I wasn't completely "clean." It would have been a much tougher decision if the results were worse.
I am still happy with the treatment decisions I've made, feeling they've helped keep me alive. For example, you don't get whole-brain radiation unless there are no other good options. My approach to the cancer has continued to be a combination of Eastern and Western medicine. As you have read here in the blog, none of it is separate from my Buddhist practice. When off chemo, the alternative options open up; for example, antioxidants and other naturopathic remedies can be taken, more acupuncture points become feasible and more parts of the body are safe for massage.
I have a bunch of appointments that I previously didn't have the time or energy for. After a long time I want to the dentist and found out I didn't have to pay a high price for taking poor care of my teeth: No cavities! Today I am getting the eye exam I haven't had in years, and a kind Sangha member is driving me there and back. Tomorrow is my naturopath/acupuncturist, and I have more massages in my future ... and more rides with Sangha.
To lessen the burden on them, I'll take the bus when the route isn't too complicated or long.
There have been times I've felt like I had "brain damage," but that seemed exaggerated until a brain doctor used that very term. My thinking is slower and sometimes seems to slow to a halt: I find myself "zoned out," staring at a landscape as a stone would. (Not being able to react as quickly as usual is one of the reasons I don't feel safe driving.) Whatever few navigational skills I had seem to be gone. My memory, which has never been a strong point, is worse than ever: I'll find myself in a room but forget what task I'm there for, from just a moment before. Anyway, I could describe my brain deficits in more detail, but I am hopeful a month or two or three off chemo will bring my brain closer back to where it was. Acceptance was a main practice, as I was recognizing I was no longer who I thought I was. I was pleasantly surprised that transition didn't take nearly as long as I thought it would. Part of my self-image was a certain level of intelligence. Imagine what it's like to lose let's say 20 points off your IQ. (I have no idea what my IQ is or was.)
... which partly explains why it has taken me so long to post this update.
Have a good Summer.
An aside: Does that make you think about the relationship between the two? I believe I've written about that subject in a previous post.
Narrative: My tumor marker has been in the normal range for a few months, which made me hopeful that my CT scan (which my oncologist kindly scheduled 2 months from the previous one, whereas usually all my scans are 3 months out) would be so good that I could be off chemo for the summer. The CT was not bad - there are no new tumors - but a few existing ones have gotten slightly larger.
However, my brain has not been working well in various ways for some months now, and recently dipped below the line where I feel comfortable driving.
Upshot: My doctor recognized that, between the 20 whole-brain radiations I got in 2011 and all the chemo I've had over 6+ years, my brain needed a break, even though there's a higher risk that the tumors will get much larger or even metastasize without chemo. I'll be under close monitoring and will get my brain MRI in another month (3 months out), as usual. I'm very comfortable with this plan. I was already hoping the CT results would be good enough to get a bit of a break, even if I wasn't completely "clean." It would have been a much tougher decision if the results were worse.
I am still happy with the treatment decisions I've made, feeling they've helped keep me alive. For example, you don't get whole-brain radiation unless there are no other good options. My approach to the cancer has continued to be a combination of Eastern and Western medicine. As you have read here in the blog, none of it is separate from my Buddhist practice. When off chemo, the alternative options open up; for example, antioxidants and other naturopathic remedies can be taken, more acupuncture points become feasible and more parts of the body are safe for massage.
I have a bunch of appointments that I previously didn't have the time or energy for. After a long time I want to the dentist and found out I didn't have to pay a high price for taking poor care of my teeth: No cavities! Today I am getting the eye exam I haven't had in years, and a kind Sangha member is driving me there and back. Tomorrow is my naturopath/acupuncturist, and I have more massages in my future ... and more rides with Sangha.
To lessen the burden on them, I'll take the bus when the route isn't too complicated or long.
There have been times I've felt like I had "brain damage," but that seemed exaggerated until a brain doctor used that very term. My thinking is slower and sometimes seems to slow to a halt: I find myself "zoned out," staring at a landscape as a stone would. (Not being able to react as quickly as usual is one of the reasons I don't feel safe driving.) Whatever few navigational skills I had seem to be gone. My memory, which has never been a strong point, is worse than ever: I'll find myself in a room but forget what task I'm there for, from just a moment before. Anyway, I could describe my brain deficits in more detail, but I am hopeful a month or two or three off chemo will bring my brain closer back to where it was. Acceptance was a main practice, as I was recognizing I was no longer who I thought I was. I was pleasantly surprised that transition didn't take nearly as long as I thought it would. Part of my self-image was a certain level of intelligence. Imagine what it's like to lose let's say 20 points off your IQ. (I have no idea what my IQ is or was.)
... which partly explains why it has taken me so long to post this update.
Have a good Summer.
Labels:
My health update
Thursday, April 9, 2015
My Cancerversay
Today I'm celebrating living 6 years with advanced cancer, and even a brain metastasis. I like to think of it as an adventure.
As this blog documents, practicing Kadampa Buddhism has made an enormous difference. (I was supposed to be gone a while ago.)
I deeply appreciate your prayers for me. You can see that they work. Makes it so easy to have faith.
You may recall that I was on the targeted drug, a non-chemo delivered like chemo, called "Avastin," for about 9 months. Since it stopped working this Feb, I've been on a gem of a chemo called "Gemzar." (It is actually pronounced like the word "gem.") It's working: My tumor marker has plummeted!
Its main side effect has been fatigue that often causes me to sleep 12 hours a night and to lie on the couch for my waking hours. My "commute" these days is mostly from the bed to the couch. The fatigue is mental as well as physical, so even talking takes a lot of my energy. It's like having just a few drops of gas in the car: Most days I have to be very careful how I spend my limited energy.
A huge Thank You also to Richard, who does all kinds of things to make my life easier - too many to list here. He has great patience for me when my brain damage manifests as stupid thinking or memory lapses.
I have plans to be at US Festival later this month and hope to see you there.
Love,
Mimi
As this blog documents, practicing Kadampa Buddhism has made an enormous difference. (I was supposed to be gone a while ago.)
I deeply appreciate your prayers for me. You can see that they work. Makes it so easy to have faith.
You may recall that I was on the targeted drug, a non-chemo delivered like chemo, called "Avastin," for about 9 months. Since it stopped working this Feb, I've been on a gem of a chemo called "Gemzar." (It is actually pronounced like the word "gem.") It's working: My tumor marker has plummeted!
Its main side effect has been fatigue that often causes me to sleep 12 hours a night and to lie on the couch for my waking hours. My "commute" these days is mostly from the bed to the couch. The fatigue is mental as well as physical, so even talking takes a lot of my energy. It's like having just a few drops of gas in the car: Most days I have to be very careful how I spend my limited energy.
A huge Thank You also to Richard, who does all kinds of things to make my life easier - too many to list here. He has great patience for me when my brain damage manifests as stupid thinking or memory lapses.
I have plans to be at US Festival later this month and hope to see you there.
Love,
Mimi
Labels:
My health update
Thursday, February 19, 2015
A New Chapter
I apologize for neglecting this blog. To be honest, it will have very occasional updates, but on this occasion I am writing about my health.
If life were a book, this would be a new chapter, but a continuation of the main plot of my "biography" of cancer and the many ways Dharma has helped me. As I said a long time ago, cancer has really helped my spiritual practice. That doesn't mean I'd wish it on anyone else. One purpose of writing it is not just to give scientific evidence - my personal experience - of the power of faith and prayer. But also to document one person's adventure, to dispel the fear of cancer. Even my advanced cancer hasn't been a "bad trip." I can list many, many conditions that are much worse - which I often list for myself to generate compassion and to use as material for taking practice.
When last you heard, I was in remission - my oncologist's term (most women with this chronic cancer call it "no evidence of disease" or NED - because it's very, very rare to have a cure). I have been getting what I call a "non-chemo chemo," a targeted, maintenance therapy that can distinguish between healthy and cancerous cells.
I turned the page as a result of recent scan results: I was very happy with them, because my brain MRI was even better than my last one, and, for the first time in 17 years, I had a bone scan from top to toe and there were no tumors. Bones are one of the most common places for the original tumor to spread to. There are remedies, but my understanding is that it is hard to treat and can be very painful.
But the CT scan of my torso showed a tumor in my iliac lymph node going from "infinitesimally small" size - barely visible on the CT - to 1.4cm round, which is still very small. The ramification of that, however, is that I am back on traditional chemo, one that starts with "Gem." I had my second dose today, and am off next week.
The most important upshot is that I'm cleared for takeoff: I got onsite accommodations for US Festival, which will be followed by one night visiting my Dad and Stepmom, and spending several days visiting my brother's family and going into NY City with them.
It's Vajrapani! I've had a connection with him for a long time, even before Geshe-la started granting that empowerment. I have heard there's a healing practice relying on Vajrapani, and requested the transmission be given if it would be beneficial.
Hope to see you there.
If life were a book, this would be a new chapter, but a continuation of the main plot of my "biography" of cancer and the many ways Dharma has helped me. As I said a long time ago, cancer has really helped my spiritual practice. That doesn't mean I'd wish it on anyone else. One purpose of writing it is not just to give scientific evidence - my personal experience - of the power of faith and prayer. But also to document one person's adventure, to dispel the fear of cancer. Even my advanced cancer hasn't been a "bad trip." I can list many, many conditions that are much worse - which I often list for myself to generate compassion and to use as material for taking practice.
When last you heard, I was in remission - my oncologist's term (most women with this chronic cancer call it "no evidence of disease" or NED - because it's very, very rare to have a cure). I have been getting what I call a "non-chemo chemo," a targeted, maintenance therapy that can distinguish between healthy and cancerous cells.
I turned the page as a result of recent scan results: I was very happy with them, because my brain MRI was even better than my last one, and, for the first time in 17 years, I had a bone scan from top to toe and there were no tumors. Bones are one of the most common places for the original tumor to spread to. There are remedies, but my understanding is that it is hard to treat and can be very painful.
But the CT scan of my torso showed a tumor in my iliac lymph node going from "infinitesimally small" size - barely visible on the CT - to 1.4cm round, which is still very small. The ramification of that, however, is that I am back on traditional chemo, one that starts with "Gem." I had my second dose today, and am off next week.
The most important upshot is that I'm cleared for takeoff: I got onsite accommodations for US Festival, which will be followed by one night visiting my Dad and Stepmom, and spending several days visiting my brother's family and going into NY City with them.
It's Vajrapani! I've had a connection with him for a long time, even before Geshe-la started granting that empowerment. I have heard there's a healing practice relying on Vajrapani, and requested the transmission be given if it would be beneficial.
Hope to see you there.
Labels:
My health update
Thursday, March 20, 2014
In Remission!
Surprising!
Was hoping the couple of tumors would at least be stable, but this is even better: According to the CT scan I had on Tues, they're completely gone!
Having been on chemo for a year and a few months, I'm exhausted. Looking forward to getting some energy back.
Thank you, Buddha.
Thank you, Sangha.
Thank you to everyone who's been making prayers and offering good thoughts.
Was hoping the couple of tumors would at least be stable, but this is even better: According to the CT scan I had on Tues, they're completely gone!
Having been on chemo for a year and a few months, I'm exhausted. Looking forward to getting some energy back.
Thank you, Buddha.
Thank you, Sangha.
Thank you to everyone who's been making prayers and offering good thoughts.
Labels:
My health update
Saturday, February 15, 2014
On Break from Chemo
When I saw my oncologist in mid-January for my monthly chemo, he surprised me by saying not only was I not getting chemo that day, but that I was never having any more of the drug (Doxil), because it was causing my body too much trouble. (I thought that I was finally having a more typical patient experience, feeling like I'd gotten off pretty easy until I switched to this combo in mid-August. None of my side effects was serious or would last after I stopped taking the drug. But he has more perspective, of course, and I don't mind dropping it. I was spending a lot of my day trying to prevent and treat the various skin-related and other side effects.)
Dr K told me to take a 2-week break then see him again for a consultation. When I saw him after that break, he said to take Feb off, but then we decided that I'll get the the targeted drug (Avastin, which is only chemo in the sense of not being surgery or radiation) twice in February, then next month we'll decide on what drug to combine with the Avastin, which will depend on how I'm doing physically, because there's a milder chemo I could choose, but I'd rather go for something stronger.
So yesterday I got treatment. Being at the cancer center was like seeing old friends. As someone who used to be there 3 weeks out of 4, it felt like I'd been away a long time.
I did meet a chemo nurse I hadn't had before, who worked as a pediatric oncology nurse at Children's Hospital for 11 years. Suzanne's creating a nonprofit called Ladybug House, which you can see on Facebook. This is their description: "Ladybug House will be a community-based palliative-care home offering free respite and end-of-life care to children and young adults in a home setting." She's been doing background research for years and said there were only 2 or 3 places in the U.S. like it. Yesterday Suzanne was celebrating because she'd gotten some legal approval, I think it was. (She has a lot of prestigious lawyers, architects, and other professionals working pro bono to make this happen.) There's also going to be spiritual support, and she said she'd appreciate prayers for the project.
Dr K told me to take a 2-week break then see him again for a consultation. When I saw him after that break, he said to take Feb off, but then we decided that I'll get the the targeted drug (Avastin, which is only chemo in the sense of not being surgery or radiation) twice in February, then next month we'll decide on what drug to combine with the Avastin, which will depend on how I'm doing physically, because there's a milder chemo I could choose, but I'd rather go for something stronger.
So yesterday I got treatment. Being at the cancer center was like seeing old friends. As someone who used to be there 3 weeks out of 4, it felt like I'd been away a long time.
I did meet a chemo nurse I hadn't had before, who worked as a pediatric oncology nurse at Children's Hospital for 11 years. Suzanne's creating a nonprofit called Ladybug House, which you can see on Facebook. This is their description: "Ladybug House will be a community-based palliative-care home offering free respite and end-of-life care to children and young adults in a home setting." She's been doing background research for years and said there were only 2 or 3 places in the U.S. like it. Yesterday Suzanne was celebrating because she'd gotten some legal approval, I think it was. (She has a lot of prestigious lawyers, architects, and other professionals working pro bono to make this happen.) There's also going to be spiritual support, and she said she'd appreciate prayers for the project.
Labels:
My health update
Sunday, January 19, 2014
My Personal Best (or Worst?)
In thinking about the Winter Olympics next month, where athletes not only hope to win but also to set their "Personal Best" records, my latest little joke is that I've been continuing to set my Personal Best in the chemo competition. That is actually one of the games you don't want to win. It is a select group, however - it's not as if just anyone can get chemo. You have to qualify with a scan or a blood test, and you could say it involves a lot of training and a support team (doctors, nurses, friends - as opposed to coaches, massage therapists, and teammates).
Since I was diagnosed in April 2009, this is my longest run of chemo without a break. With this chronic disease, what you're working toward is periods with "no evidence of disease" (NED, pronounced like the man's name). Women with this cancer look forward to "dancing with NED."
For example, I had a few months of treatment, then was NED for 6 months, restarted chemo and had, say, 4 months of NED. ...
My current record starts in mid-Oct of 2012 and is still on. There are 2 tiny tumors remaining in my abdomen, and I'm not done until they disappear from the scan.
I get my treatment - a traditional chemo drug plus a newer targeted agent - every 4 weeks. (Before switching to that combo of drugs in mid-August, the schedule I'd always had was weekly chemo 3 weeks out of every 4. The schedule varies depending on the chemo drug and other factors.)
Yesterday was my treatment day, which typically involves 3 stops at the cancer clinic:
1. Lab to draw blood to make sure my system is strong enough to benefit from the chemo. For example, some chemo drugs are known to be hard on your red blood cells, so they want to check that the level is high enough; if it gets too low over time and continued chemo, getting a blood transfusion will fix it.
2. A nurse does the initial intake to check my vitals, medications, and latest side effects, then Dr K shambles in. His presence is so modest - he wears a tweedy blazer, not a lab coat. You wouldn't know what a great doctor he is, or how accomplished he is in other ways: researcher, photographer, climber. Or that he is a family man, who the chemo nurses have described doting on his granddaughter. When chemo nurses get cancer, they go to him. He treats everyone from VIPs to charity cases.
Typically I don't have many issues I need to discuss with him, and we'll just chat or joke about politics, because otherwise we would cry about them. He told me clearly when I first saw him that an office visit lasted as long as a patient needs. For some reason - it wasn't on my conscious agenda - at that first appointment I asked about end of life issues, and he said we could always talk about it, and that we could also schedule an appointment at the very end of the day so there would be no pressure to end it at a particular time! Who is this man?
It's very cheerful there, throughout the clinic - from the receptionists to the nurses to the security guards. As a regular, they all know me by name; we're like friends. There is so much laughter. Who are these people?
3. If I pass the blood test, he sends me down to the chemo floor, where I get hooked up to the IV machine and start getting infused with "pre-meds," which help prevent reactions, then one chemo drip over a period of hours, followed by the other chemo drug over a few more hours. Lastly there are a few "flushes" with saline and Heparin to clean out my port, a device that was years ago was surgically implanted near my collarbone that makes my blood system easy to access. As someone with bad veins, I particularly appreciate the port, but even patients with good veins like their port from everything I've heard. If you're anticipating ongoing treatment, ports are so very nice to have. The total visit time varies, as you might expect given all the variables above, but usually runs 6-7 hours.
So, yesterday was my chemo day, but surprisingly I did not get chemo. When Dr K saw what the chemo drug had done to my skin, he said there was no way I was getting treatment, but instead was to take a break for at least 2 weeks to recover. I'm to check in with him early next week if I think I could benefit from seeing a dermatologist.
In early February Dr K and I will meet just for an office visit to discuss which of the drugs on the menu I should try next. I already know the main possibilities, and we've discussed their pro's and con's at previous junctures; in fact, Dr G (the great 2nd-opinion specialist I somehow managed to see twice) gave me an ordered list with additional reasons, so I already have a pretty good idea where I'm headed....
... which is to Vancouver next weekend to the Western Canada Dharma Celebration, with Gen-la Dekyong granting Amitayus Empowerment. Blessings of long life, good fortune and wisdom. Just what I need - what we all need. Thank you Buddha.
I even hope to attend her Modern Buddhism public talk on Thursday evening.
Hope you can make it.
Since I was diagnosed in April 2009, this is my longest run of chemo without a break. With this chronic disease, what you're working toward is periods with "no evidence of disease" (NED, pronounced like the man's name). Women with this cancer look forward to "dancing with NED."
For example, I had a few months of treatment, then was NED for 6 months, restarted chemo and had, say, 4 months of NED. ...
My current record starts in mid-Oct of 2012 and is still on. There are 2 tiny tumors remaining in my abdomen, and I'm not done until they disappear from the scan.
I get my treatment - a traditional chemo drug plus a newer targeted agent - every 4 weeks. (Before switching to that combo of drugs in mid-August, the schedule I'd always had was weekly chemo 3 weeks out of every 4. The schedule varies depending on the chemo drug and other factors.)
Yesterday was my treatment day, which typically involves 3 stops at the cancer clinic:
1. Lab to draw blood to make sure my system is strong enough to benefit from the chemo. For example, some chemo drugs are known to be hard on your red blood cells, so they want to check that the level is high enough; if it gets too low over time and continued chemo, getting a blood transfusion will fix it.
2. A nurse does the initial intake to check my vitals, medications, and latest side effects, then Dr K shambles in. His presence is so modest - he wears a tweedy blazer, not a lab coat. You wouldn't know what a great doctor he is, or how accomplished he is in other ways: researcher, photographer, climber. Or that he is a family man, who the chemo nurses have described doting on his granddaughter. When chemo nurses get cancer, they go to him. He treats everyone from VIPs to charity cases.
Typically I don't have many issues I need to discuss with him, and we'll just chat or joke about politics, because otherwise we would cry about them. He told me clearly when I first saw him that an office visit lasted as long as a patient needs. For some reason - it wasn't on my conscious agenda - at that first appointment I asked about end of life issues, and he said we could always talk about it, and that we could also schedule an appointment at the very end of the day so there would be no pressure to end it at a particular time! Who is this man?
It's very cheerful there, throughout the clinic - from the receptionists to the nurses to the security guards. As a regular, they all know me by name; we're like friends. There is so much laughter. Who are these people?
3. If I pass the blood test, he sends me down to the chemo floor, where I get hooked up to the IV machine and start getting infused with "pre-meds," which help prevent reactions, then one chemo drip over a period of hours, followed by the other chemo drug over a few more hours. Lastly there are a few "flushes" with saline and Heparin to clean out my port, a device that was years ago was surgically implanted near my collarbone that makes my blood system easy to access. As someone with bad veins, I particularly appreciate the port, but even patients with good veins like their port from everything I've heard. If you're anticipating ongoing treatment, ports are so very nice to have. The total visit time varies, as you might expect given all the variables above, but usually runs 6-7 hours.
So, yesterday was my chemo day, but surprisingly I did not get chemo. When Dr K saw what the chemo drug had done to my skin, he said there was no way I was getting treatment, but instead was to take a break for at least 2 weeks to recover. I'm to check in with him early next week if I think I could benefit from seeing a dermatologist.
In early February Dr K and I will meet just for an office visit to discuss which of the drugs on the menu I should try next. I already know the main possibilities, and we've discussed their pro's and con's at previous junctures; in fact, Dr G (the great 2nd-opinion specialist I somehow managed to see twice) gave me an ordered list with additional reasons, so I already have a pretty good idea where I'm headed....
... which is to Vancouver next weekend to the Western Canada Dharma Celebration, with Gen-la Dekyong granting Amitayus Empowerment. Blessings of long life, good fortune and wisdom. Just what I need - what we all need. Thank you Buddha.
I even hope to attend her Modern Buddhism public talk on Thursday evening.
Hope you can make it.
Labels:
My health update
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