Saturday, August 22, 2009
I am scheduled to get a CT scan in mid-September and to get a checkup in early October, when I expect to be officially declared in remission - or "NED" (prounounced "en - ee - dee," not like the guy's name and which is short for no evidence of disease).
Already I have more energy, even though the last bit of my Festival cold is still hanging on. Not energy like you would think of it - I still take a long nap in the afternoon as well as a long sleep at night - but more than I've had in months.
I continue to be grateful for your prayers and support - they make all the difference.
Friday, July 24, 2009
Hope all of you who are at Festival this week enjoy the empowerment, the teachings and the retreat. Please take good notes : )
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
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
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
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
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
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
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.
Wednesday, June 3, 2009
1. Click the word "COMMENTS" below an entry.
2. Type your comment in the box.
3. In the Comment as box, click Anonymous.
4. Click Post Comment.
Please send me email at firstname.lastname@example.org if it doesn't work.
Of course as Buddhists we know that you can be happy all the time if you practice, and that you don't need to have your life threatened to appreciate What Matters.
"Fourteen years ago I was stabbed in the throat. ... The point is that after my unsuccessful murder I wasn’t unhappy for an entire year.
I’m not claiming I was continuously euphoric the whole time; it’s just that, during that grace period, nothing much could bother me or get me down. The sort of horrible thing that I’d always dreaded was going to happen to me had finally happened. I figured I was off the hook for a while. In a parallel universe only two millimeters away from this one (the distance between the stiletto and my carotid), I had been flown home in the cargo hold instead of in coach. Everything in this one, as far as I was concerned, was gravy.
I wish I could recommend this experience to everyone. It’s a cliché that this is why people enjoy thrill-seeking pastimes ranging from harmless adrenaline fixes like roller coasters to suicide attempts with safety nets, like bungee jumping. The catch is that to get the full effect you have to be genuinely uncertain that you’re going to survive. The best approximation would be to hire an incompetent hit man to assassinate you.
It’s one of the maddening perversities of human psychology that we only notice we’re alive when we’re reminded we’re going to die, sort of the same way some of us only appreciate our girlfriends after they’re exes. ... "
Tuesday, June 2, 2009
When I noticed some aching in my hips on a walk last week, my first thought was , "Uh oh - maybe the cancer's moved into my bones." I had a bit of concern, which faded away and I forgot about it until I was at the doctor's office the next day and the nurse asked if I had any bone pain. "Yes," I said, "how'd you know?" She explained that was a good sign: It mean the Neupogen was helping my bone marrow produce more white blood cells.
It reminded me that we don't always recognize good conditions. We tend to think pain is always to be avoided. Unless we're Lojong practitioners, we think suffering has nothing but bad qualities. And we think cancer is a bad thing.
When I was first diagnosed, I had some level of acceptance - that this was my karma ripening, and if I kept a happy mind that negative karma would be purified. But I didn't welcome it wholeheartedly, and I didn't give up "the idea that things should be other than what they are." Even intellectually I wondered how it could be better to have cancer. Now more and more I can see the benefits. To name just one: it's a "real-life" death meditation that gives my practice a kick in the pants. (There'd be even more benefit if you used my cancer to put some "oomph" into your own meditation on death and impermanence - come visit my mountain : )
As it says on the Kadampa webpage about Dorje Shugden, "If we rely sincerely upon Dorje Shugden, he will arrange the conditions that are most conducive for our Dharma practice, but these will not necessarily be the ones that we ourself would have chosen! Dorje Shugden will bless our minds to help us transform difficult situations into the spiritual path ..."
I try to see every situation in my life as manifested by my Spiritual Guide for my training. I try to think, "What is this teaching me? How can I make use of this?" Over time I'll write more about what I'm getting out of this experience.
You may still be a bit skeptical about all this "cancer is good" talk, so I'm going to include some other voices. When I was looking for more information about the IP chemo, the best info I found was an online discussion/support group for women with ovarian cancer. Recently there was a discussion where several people talked about how cancer had improved their lives and made them better people.
A few excerpts:
"As much as I hate cancer and would strangle it senseless if it were something I could wrap my mitts around, I have to say... I wouldn't change my experience for anything. It made me who I am today and I do believe it's for the better."
"I know I have much more compassion for people who are suffering than I did before ..."
"I'm so glad that if someone had to get cancer, it was me instead of someone I love......I know this may sound odd but..........I think cancer made me a better person."
"Ladies, I have to admit that 5 1/2 years ago when I was diagnosed with [ovarian cancer] --if I heard of anyone saying Cancer has changed my life for the better I really wanted to punch them or say "what kind of life did you have?" But over the years I can say I agree with all comments--cancer brings your life into perspective of what is really important ..."
Saturday, May 30, 2009
After the Benadryl went in, I feel asleep - so much for the reading I thought I was going to do. It didn't help that they had me lying flat in the Lazy Boy-type chairs they use in the chemo room. I sat up for the IV chemo I had last time in the office, but they recommended the extra-lazy position for the chemo administered abdominally.
I was directed to lie down for 2 hours at home, switching every 15 minutes between lying on my right side and my left side. I did the same maneuvers when I got the Cisplatin chemo abdominally in the hospital last week. Apparently they're taking advantage of gravity to make sure the chemo coming through the soaker hose-like catheter attached to the IP port gets widely distributed throughout my abdomen. It's very mechanical - unlike a lot of treatment, it's easy to picture what's going on.
Yesterday when I went to the doctor's office and got my blood tested to see if my system was strong enough for the chemo, I failed the test, but my doctor decided we could go ahead anyway! This is very good news.
The chemo nurses seemed very surprised - when they came back with the report, the number wasn't even that close, and they were ready to send me home. Thankfully, my oncologist/surgeon was in the office - he's often in surgery or at another clinic - and thankfully my nurse went back to ask him about Plan B. He's the only one there qualified to override the usual protocols. For the record, my ANC (absolute neutrophil count) was 0.6, after being 0.3 on Tuesday, and the cutoff to go ahead with treatment is usually 1.0.
But don't worry - he also prescribed a longer-lasting version of the white-cell enhancer (a cousin to Neupogen called Neulasta), so my counts should be back up in a few days - you could say my curve is on an upward trajectory. It's like a teacher passing you because they have every reason to expect you'll know the info in a few days : ) When does that ever happen!?
Both Neupogen and Neulasta are expensive drugs, so insurance will only pay for them when there's demonstrated need.
I really do think my doctor is Medicine Buddha, and that my nurses are all Bodhisattvas, and that your prayers pulled me through again, for which I am most grateful.
I'm including it here as a reminder - to myself and maybe to you as well - that cancer isn't the only serious disease out there, although the word "cancer" seems to evoke more fear. Contemplating this story can help our training in compassion. Speaking of compassion, note especially the bold below, about the compassionate homeless man who helped when no one else would.
In the daylight, she still had trouble believing that her athletic, magnetic son had the devastating disease with an unknown cause, named for the 1930s New York Yankees star whose career was cut short by it. When Joshua’s racquetball racket flew out of his hand because he could not grip it, his mother’s diagnosis was tennis elbow. When the first neurologist mentioned A.L.S., she scheduled more tests, rooting for Lyme’s disease, multiple sclerosis or even cancer. ... Like the 5,600 other people given the diagnosis each year in the United States, Dr. Rothstein said, Joshua would almost certainly die of the disease in 2 to 5 years.
In late July, Joshua fell in the street near Times Square on a trip to New York with his wife, Joy, and could not get up. Joy could not lift him, and passers-by did not stop. Finally, a homeless person watching from the corner came to help.
The event was traumatic for Joshua, who was beginning to experience another symptom of the disease, too, a lack of control over his emotions. At the weekly poker game with his friends, he could no longer bluff.
Involuntary twitches known as fasciculations signaled which of Joshua’s muscles would be the next to go. His mother watched the disease spread from his right arm to his left arm to his left leg. A natural storyteller who had played toastmaster at friends’ weddings and charmed business associates with stories of his misadventures in surfing and snowboarding, Joshua began to slur his words in what is known as the “A.L.S. accent.”
“His [newborn] son keeps sitting on his lap saying ‘Hello, Dada,’ waiting for Josh to say hello,” [said Josh's Mom].
... the application [for the experimental drug to the FDA] had been rejected, [his Mom] stood up in disbelief.
“How could that be?” she asked, dazed.
“He said they had safety concerns,” ... “This for a drug that was approved for children!”
“Safety,” Kathy repeated. “And what, exactly, is safe about A.L.S.?”
His swallowing had deteriorated to the point that he choked after just two sips of an Orange Crush soda he asked his mother to bring him one night. When he finally agreed to have a feeding tube inserted in mid-February, his family viewed it as a statement that he wanted to live. But the tube also represented a new frontier in the heartbreak of A.L.S., which took away small pleasures every day, and sometimes big ones.
EPILOGUE: In April, Joshua signaled that he felt he was swallowing better, and to Joy and Kathy he seemed to be regaining tone in his voice. But on Easter Sunday, he was rushed to the hospital with pneumonia and is still on a ventilator. He continues to take [the experimental drug] Iplex every day.
Friday, May 29, 2009
For all of you going to Summer Festival - and I hope that includes every one of you reading this blog - here's a recommendation for a great place to eat cheaply and healthfully at Manchester Airport ("MAN" for short). It's not classically he-man food - more like a quiche kind of place - called "Joe's," in Terminal 1 on the Arrivals level, next to Gregg's. Here's a link to more info: http://www.manchesterairport.co.uk/manweb.nsf/Content/RETAILERjoeskitchen
Note that there are links to their menus at the bottom of that page.
Rebecca, Jody and I had a delicious dinner there and were quite happy with the food (which includes various healthy and vegetarian options), the friendly service, and the comfortable cafe ambience.
If you're running for a train or want an even cheaper meal, I can also recommend the vegetarian boxed sandwiches to go at the Spar convenince store, which was straight ahead after exiting the baggage claim area in Terminal 2; I see they also have a location in the Terminal 3 Arrivals area. In addition to the usual Egg Mayo, they had Hummus, Felalfel & Hummus, and Feta Something sandwiches at very reasonable prices; I think all of those were organic.
P.S. Joe's page says that "Toad in the Hole" is one of their specialties. I had to look it up:
They also offer "Bubble and squeak":
This website has a nice series of short pieces on Understanding Low White Blood Cell Counts. For more scientific detail, this Wikipedia entry on white blood cells has a nice chart with diagrams and b&w photo of blood.
In case you're interested, the shot was "CSF" (colony stimulating factor), often know by its brand name, Neupogen (which is pronounced like "Noop uh jen"); yesterday I got another shot of the same thing. It's usually very effective and works pretty quickly.
I was very surprised that my counts were low because I've been feeling so good; on the other hand, it's quite common for chemo drugs to lower blood counts, and the Cisplatin medicine nectar (chemo) I got last Tuesday is known for being especially good at it.
I was ordered to rest - but also to keep walking 30 minutes every day - and to avoid people and to eat only cooked food, so as to avoid infection.
If I pass the test later this morning, as I expect to, I'll get 4 hours of Taxol via my abdominal (IP) port.
No matter what happens with my chemo, I'll be at tonight's introduction to the Post Spring Festival Retreat at KMC Washington.
Thursday, May 28, 2009
Wednesday, May 27, 2009
At Spring Festival Geshe-la talked about how in our society we think we believe only in what we can see.
But actually there are various phenomena we do believe in, even though we can't perceive them with our eye awareness (or ear, nose, tongue, or tactile awareness).
If we'd recognize that, I think we'd be able to move closer to believing in karma, which is very scientific. (Remind me sometime to write about the genetics analogy and maybe to write about gravity too.)
[scroll down for answer]
Answer: Love. At least that's the one I was thinking of.
Geshe-la explained in the same teaching that we all believe in tomorrow, even though we can't see it. Hard to argue with that.
He also taught a lot about the 3 kinds of love, especially wishing love.
The outpouring of love I felt at Festival was palpably real.
Richard was quite concerned about this trip, and knowing that so many people were taking care of me helped allay his concerns - so your kindness extends to him as well.
I’m now back in Seattle and very much looking forward to this weekend’s Post Spring Festival Retreat with Gen-la Dekyong.
I’d like to thank everyone who made prayers for a safe journey so that I could see my Guru in person, receive the empowerment of Buddha Maitreya (the Buddha of loving-kindness), absorb buckets of blessings, and enjoy many meaningful conversations with Sangha.
For their help and company during the trips there and back and at Manjushri, I’d also like to thank …
* Jamie from Olympia and Eve & Michael - on the flights from Seattle to Manchester
* Jody and Rebecca - at Bewleys Hotel, on the train (Rebecca’s an excellent luggage Sherpa), and at Manjushri sharing their room and keeping watch over me at sessions
* Susan Payne - a longtime practitioner and nurse who does outreach work with the homeless in Yakima – I think Richard was relieved to hear I was staying with an RN – my B&B roommate in town and walking and dinner companion; I hope more of you get to know her
* Lekmo (formerly Carol Brown) - I probably used her bed at Manjushri more than she did; being able to rest there allowed me to spend much more time at Festival than would have been possible otherwise
* Bonye and Claire from Portland – Ulverston taxi arrangers and companions for Susan and me
* Chondzin of KMC NY - lunch forager and companion
* Neal from Albuquerque - who was very enthusiastic about this cancer journey
* Ruth of Tara Centre in England, their longtime Treasurer, who appeared exactly when I needed a ride into town
* Gen Demo, Gen Chőma and Gen Lingpur – who shared their door-to-door ride from Manjushri to Bewleys, saving me various troubles of the crowded Bank Holiday train and, more importantly, giving me a chance to hear Lingpur’s own inspiring story
* Jindak, Jamie and Lekmo – who made sure I got to the airport for our 6am flight, held numerous places in line for me, and provided me with a comfortable sleeping pad when our flight from Amsterdam was delayed about 4 hours, among other kindnessess
* Festival organizers – who made everything run so smoothly for the 3,400 or so of us who had the excellent good fortune to attend
* The many others too numerous to mention, including all the sentient beings who give us the opportunity to practice compassion, without which we would never be able to free ourselves from our own suffering and finally attain enlightenment
* And most especially to Venerable Geshe-la, who is the kindest of all. One day I hope to be able to begin to repay some of it.
Thursday, May 21, 2009
Tuesday, May 19, 2009
I found a very eloquent blog by a NY Times editor with prostate cancer who expresses many thoughts and feelings I've had, but in much more beautiful language than I could come up with.
Below are a few excepts from his April 7 post titled "In Cancer, a Deeper Faith, "By Dana Jennings.
You can more of his thoughtful posts about having cancer at http://well
And it’s a powerful thing to know that others are praying for your return to health. My faith reminds me that I am not alone, that I am part of a larger whole, part of an ancient tradition and a timeless narrative. Disease often makes us feel cut off from community, even from ourselves, and faith helps defy that sense of isolation.
And I know, soul deep, that I have not been cut open, radiated, and tried physically and spiritually
The most surprising thing I’ve learned is that cancer can be turned toward blessing. ... "
Sunday, May 17, 2009
He took photos, so if I can get them from him, I'll post them here.
Dachog commented that there's freedom in having clipped hair, and I have to agree.
She's at our house now, as is her oldest daughter, Susie, and we're awaiting the arrival of her oldest son, Roger, and his oldest daughter, Caroline. The latter two are flying in from Santa Fe to pick up an old Toyota Tercel wagon from Susie. The car was originally Roger's, then it was Dachog's, then Susie's daughter's, then Susie's. Twenty-five years, 130,000 miles and it's still running well. I figure 25 car years is about 95 human years. May we all have such long, productive lives.
Here's an interesting news item: Ovarian Cancer's Specific Scent Detected By Dogs
"The researchers, led by György Horvath MD, PhD, from the University Hospital in Göteborg, Sweden, along with colleagues at Working Dog Clubs in Sweden and Hungary, trained dogs to distinguish different types and grades of ovarian cancer, including borderline tumors.
'Our study strongly suggests that the most common ovarian carcinomas are characterized by a single specific odor detectable by trained dogs,' write the authors in the article."
Saturday, May 16, 2009
Here's a short excerpt:
"Natural historian Jake Page said some scientists are acknowledging what pet owners have told their canines all along: 'Good dog.'
Dogs are full of natural goodness and have rich emotional lives, said animal behaviorist Marc Bekoff, professor emeritus at the University of Colorado, Boulder.
... Page, author of "Do Dogs Smile?," said biology no longer dismisses dogs and other animals as 'furry automatons' driven by instinct and food."
It seems that more and more people are starting to see animals as fellow sentient beings and to treat them better. I imagine this makes Geshe-la happy.
Which reminds me of a conversation I had with a friend who's a longtime Zen practitioner. Many people have heard that koans like "what is the sound of one hand clapping?" are part of Zen practice. This friend told me that her teacher gave her the koan "Do dogs have Buddhanature?" and that the answer is "Woof!" : )
Thursday, May 14, 2009
I haven't had my hair "surgery" yet but expect to have it in the next day or two or three.
Thank you, as always, for your prayers. I felt so many blessings while I was waiting in the pre-surgery room.
P.S. Remind me to write about robotic surgery and blanket warmers.
Wednesday, May 13, 2009
At my house we like to play with words. Living with a linguist will do that. Life is funner when you live with a punner. (Ugh - did I just say that!?)
Anyway ... yesterday writing about my dog's "undercoat" got me thinking about its opposite, and the editor/joker in me thinks I should have called my "primary coat" my "topcoat" or my "overcoat."
Then the word "overcoat" reminded me of a story I read in a great book called After Long Silence by Helen Fremont, which Amazon.com introduces like this:
"In her mid-30s Helen Fremont discovered that, although she had been raised in the Midwest as a Catholic, she was in fact the daughter of Polish Jews whose families had been exterminated in the Holocaust. Fremont's tender but unsparing memoir chronicles the voyage of discovery she took with her older sister, ferreting out information from Jewish organizations and individuals and worrying about its impact on their angry, overpowering father and reticent, nightmare-plagued mother."
In a chapter about her family's life in the Jewish ghetto of Lvov, Poland, she describes the resourcefulness required to live under those harsh conditions and the discovery of the magic third side:
"Despite her acrobatics, however, the family barely survived, bartering their clothing for food, until they had almost nothing left. 'We each had only one overcoat,' my mother told me, 'which we wore day in and day out for years. The material began to wear out, so eventually we turned the coats inside out and wore them with the inner fabric exposed. But after a while even this fabric was completely worn out; we were reduced to rags. And then -- you know what happened? We discovered the third side. It was like magic! We turned the coat inside out again, and found that the third side was really quite new by comparison!' "
It's a story about imputation, don't you think? What started out as first side became second side (or underside) and then became first side - outside - again.
Tuesday, May 12, 2009
Pound by pound, I won't be able to compete with our dog, Sara, who leaves large volumes of her black hair all over the house; unlike her, I'm losing my "primary coat," not my undercoat, and mine won't be growing back anytime soon.
In the next couple of days, more of it will start to come out in clumps until it gets annoying, and I will ask Richard to get out the buzz-cutters and shave it all off. Two of my sisters-in-law kindly bought me hats when they were visiting, and Suzanne showed me how to tie a scarf around my head so that my crown is uncovered when I go in the gompa. I'll be more stylish than ever! Sorry, Gamo - no wig for me.
With this chemo regimen, I'm also slated to lose my eyebrows, but not my lashes. I bet some of you have some suggestions about replacement eyebrows - tattoos? or little "wiglet" eyebrows I could paste on? (which insurance would doubtless call "eyebrow prostheses" : )
I've been through this before, when I had chemo for breast cancer 12 years ago, so it's not unsettling the way it was then. I'm obviously not one of those people who spends a lot of time on my appearance, but even so, the first time it happens, it's somewhat upsetting to have your hair falling out - and that's a separate issue from the sense of self-consciousness the first time you go out in public without any hair.
There's probably some overlap with the way newly ordained nuns feel about their heads, but it's also distinctly different: There's something about having your hair fall out that makes you feel like your body is failing you - despite the fact that your hair is only vaguely your body in the first place. It's certainly not "meaty" the way the torso is, nor essential the way the heart is, but it still feels like part of "me" (whoever that is).
This whole experience of cancer provides lots of opportunities to contemplate the body, and many different ways to search for the body, in a conventional way. Is the IV port implanted under my skin part of my body? When they took out a bunch of organs, did my body get smaller? Well, I lost a bit of weight, but the outline of my body is still the same, so it seems not. I've even thought of it in terms of "body math": minus 1 omentum,* minus 9" of colon, plus 2 ports, minus hair, minus eyebrows. No matter how I add it up, I still have 1 body.
Do you think that soldiers who have lost all their arms and legs feel like they have half a body? or two-thirds of a body? How did Marsha Mason, the woman who spent most of her life in an iron lung, think about her body? Did she feel like the iron lung was part of her body? an extension of her body?
For me one of the best arguments for the emptiness of the body - for "body" as mere imputation - is phantom limbs: Even when you lose, say, an arm, your mind keeps telling you there is an arm there, and not just that but that it hurts too. But we also have these parts that are sort-of our body, like hair and nails. And we have that personal space around us, that feels like an extension of us; when someone enters that space, we sense it, and it's a bit like being touched. Our body awareness exends beyond our skin. How does that work?
Even the fact that the size of that space is influenced by our culture emphasizes how empty it is (for example, that the English usually have a larger zone than the Spanish).
Thankfully we all know about the ultimate nature of our body. Now for working to attain a realization of its emptiness . . .
*About the omentum: I'd never heard of it either until my "omentectomy." My surgeon told me it was like the appendix, in that I probably wouldn't miss it when it was gone.
Richard enjoyed making jokes about it: "Of course you're tired - you lost your omentum" : )
This website describes it as a "fatty apron" and describes another use for it: "The omentum is a handy tool for surgeons, who use it as a kind of biological duct tape. Sections of omentum are grafted onto cut areas or lesions to help them heal. It's been used on the gastrointestinal tract, heart, spinal cord and brain."
The Wikipedia entry has some diagrams and a bit more info.
Sunday, May 10, 2009
"From her horizontal world — a 7-foot-long, 800-pound iron cylinder that encased all but her head — Ms. Mason lived a life that was by her own account fine and full, reading voraciously, graduating with highest honors from high school and college, entertaining and eventually writing.
She survived, she later said, because she was endlessly curious and there was so much to learn.
With daily visits from her teachers, Martha resumed her studies, graduating first in her high school class. ...
Perhaps only in a place like Lattimore, whose current population is not much more than 400, could Ms. Mason have thrived as well as she did. For if Ms. Mason could not go to the town, then the town was quite prepared to come to her. The doctor visited regularly, of course, but so did all the neighbors and the neighbors’ neighbors. So did members of the local fire department,
Here's a bit more information about her book, titled simply Breath:
"After college, Martha attempted to begin a career as a writer, dictating to her mother, who had devoted her own life to Martha's care. But her father suffered a massive heart attack, leaving him, too, an invalid. Her mother, caring for both, had little time for Martha's dictation.
Technology revived Martha's dream. A voice-activated computer allowed her to write without assistance. She got it early in 1994 in a time of great despair. A devastating stroke had altered her mother's personality, causing her to turn on Martha, and eventually to revert to childhood. Martha had to become her mother's keeper, and to run a household from her iron lung.
To help her deal with the crisis, Martha began writing about her mother's selfless love."
Friday, May 8, 2009
Drescher explained the procedure he'll use to insert the intraperitoneal port next Thurs. It's outpatient laparoscopic surgery, under general anesthesia. He'll insert a scope on the left side of my abdomen to see what's where, and then insert the IP port and catheter on the right side of my abdomen.
On the 18th when they give me the IP chemo, they'll even turn my body in various ways to make sure the chemo is dispersed throughout my abdomen!
I was very encouraged to hear Drescher say that I should continue to do well with subsequent chemos, based on how I did after the first one. I thought the IP chemo could be rough, but he explained that they'd adjusted the dosage and improved the anti-emetic drugs, so it was likely that I'd feel about the same as from chemo #1 - especially given that I was still recovering from surgery then.
He also looked over the recommendations from the naturopath and said they were fine.
I may even be able to go to Spring Festival!
For me, this is all more evidence that prayers work. I am so grateful to all of you.
Thursday, May 7, 2009
Wednesday, May 6, 2009
One of the most popular articles in the NY Times today is a science piece called "Ear Plugs to Lasers: The Science of Concentration," which is largely about a new book called Rapt. It's great to see that people are interested in concentration!
Or you can recognize your brain’s finite capacity for processing information, accentuate the positive and achieve the satisfactions of what Ms. Gallagher calls the focused life.
During her cancer treatment several years ago, Ms. Gallagher said, she managed to remain relatively cheerful by keeping in mind James’s mantra as well as a line from Milton: 'The mind is its own place, and in itself/ Can make a heav'n of hell, a hell of heav'n.'"
Monday, May 4, 2009
There's every reason to think I'll continue to feel well until my IP chemo on the 18th. So I'm going to take some breaks from blogging. I wanted to warn you, because I know some of you check this blog every day to make sure I'm OK. Know that I'm enjoying my life of leisure: meditating, purifying, reading, studying for the Guide to Dakini Land exam ...
I don't want to become one of those tiresome bloggers who posts things like,"Woke up, got out of bed / Dragged a comb across my head ..."
Saturday, May 2, 2009
Wigs are expensive, and insurance will cover a certain amount of the cost when it's due to a medical condition, although I doubt insurance is going to reimburse me for the long black dreadlocks Gamo recommended : )
Friday, May 1, 2009
Yesterday I went to see the naturopath recommended by my oncologist. He prescribed a 30-minute walk every day, even when I'm completely exhausted by chemo. Let me know if you'd like to go walking (email me at email@example.com or call me). I live a couple of blocks from Green Lake but would be happy to walk other places when I'm feeling good. Mornings I tend to have more energy.
Dr. Geniac also recommended ...
* lots of fluids, especially during the IP chemo treatments, to protect my kidneys
* lots of protein, to help my body repair itself from chemo damage
* vitamin D - he thinks everyone in the NW is deficient; I'm also going to have my level checked the next time I get bloodwork done
* vitamin E, to help protect against effects of chemo
* general multivitamin, without iron - he likes powdered vitamins in gelatin capusules because they dissolve more easily
* green-tea extract
* melatonin - he puts everyone on melatonin and says studies show a better survival rate
* glutamine powder, to prevent neuropathy from the Taxol - need to learn more about this
* the book The China Study by T. Colin Campbell
* vegetarian diet
* meditation : )
I'll be learning more about all of these as time goes by.
A big "thank you" to Marie for driving me to Renton, entertaining me with stories during the long wait, asking smart questions, and taking detailed notes.
Mon, April 27 - IV chemo at Doctor's office
Thurs, May 14 - surgery at Swedish Hospital for IP port installation
Mon & Tues, May 18 & 19 - IP chemo at Swedish Hospital
Wed, May 27 - IV chemo at Doctor's office
Mon & Tues, June 8 & 9 - IP chemo at Swedish Hospital
Tues, June 16 - IV chemo at Doctor's office
This is also available as a Google calendar at
"IP" is shorthand for "intraperitoneal." Here's a useful summary from an online booklet by Sloan Kettering Cancer Center (http://www.gog.org/IPChemoEd/iptherapyguide.pdf):
"Intraperitoneal therapy is the delivery of anti-cancer drugs directly intothe peritoneal space (abdominal cavity). This space lies between the abdominal muscles and abdominal organs. The anti-cancer drug is mixed in a large volume of fluid and instilled into the peritoneal space through a port and catheter. Your surgeon will insert a peritoneal access port into a pocket beneath the skin near your rib cage. Intraperitoneal therapy allows direct contact of the cancer-fighting drug with the cancer within your peritoneal space. The drug is left in the peritoneal space to 'bathe' the cancer. This method of delivering it directly into the cavity where the cancer is located allows a higher concentration of the drug to be given."
Because it's stronger, IP chemo is also more challenging - prayers needed!
Wednesday, April 29, 2009
From Kadampa.org (http://kadampa.org/en/buddhism/the-dharma-protector/):
"If we rely sincerely upon Dorje Shugden, he will arrange the conditions that are most conducive for our Dharma practice but these will not necessarily be the ones that we ourself would have chosen! Dorje Shugden will bless our minds to help us transform difficult situations into the spiritual path, and he will open the wisdom eyes of his faithful followers, enabling them always to make the right decisions."
What could be better than that?
Tuesday, April 28, 2009
I believe all your prayers are clearing away obstacles. For example, with the Taxol there was a chance of a severe allergic reaction, which would have been apparent within 5-10 minutes. My Bodhisattva nurse administered it in small doses to begin with and kept a close eye on me, and there were no problems at all.
Days 3-6 are when I'll feel the worst of the side effects, most likely fatigue, leg pain and loss of appetite. I'm scheduled to lose my hair around May 15th, so I'll be shopping for headgear in the next couple of weeks.
Monday, April 27, 2009
I'm getting this IV treatment in my oncologist's office, sitting in a chair with a few other patients in a long room with a view of downtown.
Today I'll also get a more detailed schedule of treatments.
There are all kinds of possible side effects but the most likely are hair loss, nausea and fatigue.
The Nitty Gritty
If you're interested basic info about chemo, see What Is Chemo at Chemocare.com
The 2 chemo drugs I'm getting today are Taxol, which is "made from the bark of the Pacific Yew tree (taxus)" and Carboplatin. In subsequent treatments I'll also get Cisplatin, which is a cousin of "Carbo"; both are classified as metal salt alkylating agents.
Will try to write more later, but right now I've got to get ready ...
Friday, April 24, 2009
Here are a couple excerpts:
Last year, researchers studied 34 students at the University of Virginia, taking them to the base of a steep hill and fitting them with a weighted backpack. They were then asked to estimate the steepness of the hill. Some participants stood next to friends during the exercise, while others were alone.
The students who stood with friends gave lower estimates of the steepness of the hill. And the longer the friends had known each other, the less steep the hill appeared.
In 2006, a study of nearly 3,000 nurses with breast cancer found that women without close friends were four times as likely to die from the disease as women with 10 or more friends. And notably, proximity and the amount of contact with a friend wasn’t associated with survival. Just having friends was protective.
Thursday, April 23, 2009
It has a few additional features my family likes, including an option to send each new post as an email.
Creating a blog on CaringBridge is very easy: You simply pick a user name and password, then choose a template, which creates all the art and navigation automatically. If you can compose an email, you can create entries. I'd recommend it to others.
Wednesday, April 22, 2009
The NCI description is pithy: It's "an implanted device through which blood may be withdrawn and drugs may be infused without repeated needle sticks." My Mom had one when she was undergoing treatment for pancreatic cancer, and she found it helpful. The phlebotomists will doubtless appreciate it, too, because I'm one of those people who has small veins that aren't easy to find, and they'll be drawing blood every couple of weeks, before each chemo session. Some of my chemo drugs will be given via that port; others will be given through a port in my abdomen that hasn't been installed yet.
The port reminds me of the Multi-Pur water filters we have in the Temple kitchen and gompa sink in Seattle, except that the line is much thinner and goes into my vein - the size of the head is about the same. Here's a photo, courtesy of tirgan.com:
Is the port part of my body? What is my body now? Hmmm ...
I'd be confused if I didn't know that my body is only a concept, a label, an imputation. If only I had a direct realization of its emptiness.
Even after surgery, I was considering going to US Fest and then visiting my family - my Dad and his wife, Marilyn; my brother, sister-in-law and 2 nephews; and possibly even my sister, who I was hoping would fly up from Florida.
Richard was concerned and insisted he accompany me if I still planned to go. But then my Dad called to pass along warnings he'd gotten from friends about the danger of traveling so soon after surgery, and my family in Seattle took a vote: We did a show of "hands" and the total was 6 against, 0 for, with 2 undecided. Sara the Dog ("SaraD") cast 4 votes, Richard 2. As much as I wanted to go, I feel content about having to stay at home - blessings strike again.
I rejoice at the good fortune of everyone who gets to attend. Enjoy being at the Temple, visiting with Sangha friends old & new, and listening to the teachings - by Gen-la Khyenrab, Gen-la Dekyong, Gen Samten, AND Kadam Morten.
Cecilia, please take good notes!
If you have any chance to go to a Kadampa Festival this year, even if it's only for a few days of Summer Festival, please go.
I'm grateful for all your prayers, which I see manifesting as my doctors, nurses and nursing assistants, as hospitals and treatment facilities and as medicines. I believe in prayers because my mind feels much happier than it would normally be under these circumstances. Usually I have a low tolerance for pain, but I've had very little pain, and the doctors all seem surprised at how little pain medication I've needed (they insisted I would want some stronger, narcotic painkillers at home, but I have had no need to fill the prescription).
I "blame" all this on you : )
I can feel your prayers holding me up and giving me strength. This probably sounds dumb, but lately your prayers feel like a comfy armchair that I can sink into - your prayers cushion and support me, like a hug.
Tuesday, April 21, 2009
When I have the energy, I'm going to write about:
* Missing pieces, the jar of marbles and contemplations on the body
* The flavor blue
* Your flower offerings
* The meaning of the mountains
And if you're really good, I'll tell you about pillow splints : )
Monday, April 20, 2009
Here's more info about him:
I chose him because I wanted someone my surgeon/oncologist knew and trusted. I was also impressed that he is "among less than two dozen naturopaths nationwide – and the only ones in the state of Washington – to take and pass exams for board certification in naturopathic oncology," according to their website.
Why are you goofing off reading this blog when you could be doing something worthwhile? : )
Wednesday, April 15, 2009
From where I sit on the living room couch, I can see Richard with his laptop sending out email to family about my return, Sara curled up in a ball on the rug, and a robin on the peak of the garage, with pink puffs of cherry blossoms in the background.
Sara and I walked to the corner and back this morning. I couldn't have done that with a less disciplined dog because my latest orders are not to lift, push, or pull more than 10 pounds, which means I can't afford to be pulled down the street by my dog either. Our previous dog, Utah, who was part husky - part sled dog - never reached Sara's level of restraint and could never have "pulled off" such a trick - he was always straining at the leash.
I am deeply grateful for all your love and support and am looking forward to seeing you very soon. But first a nap ...
Monday, April 13, 2009
I should have a new estimated time of discharge after the doctors visit me tomorrow morning.
Thanks for all the prayers, calls, visits and flowers.
Thursday, April 9, 2009
Many of you have heard me say that my recent experience being diagnosed with cancer - just last Friday! - proves to me again that Dharma works. I don't have time now to list all the ways it has "come in handy" - meaning it has been more precious than I can describe - but here's just one little example: I'm lying on the table getting my ultrasound, watching while the tech scan various areas and not really knowing what to make of the pictures on the monitor. After a while I ask her what she's seeing. She indicates an area and says, "This isn't supposed to be here." I think "karma" and instantly feel better. [If I have time in the coming days, I'll try to describe a bit more about that.]
I go for refuge inside, to my heart, where my Guru is and feel comforted - like it's raining outside, but inside I am warm and dry, and I know everything is going to be all right.
Dharma comforts, Dharma heals, Dharma protects ... Dharma cures.
It alone has the power to permanently and forever cure us of everything that ails us.
At the moment, I do have a headache, which I attribute to not having eaten since breakfast yesterday (doctor's orders). Those of you who have taken Mahayana Precepts may recognize this headache.
Speaking of which, I'm sorry that I'm going to miss the Nynyne Fasting and Purification Retreat next Tuesday and Wednesday, which begins with Precepts each day. I hope if you have the chance, you'll get to do part of the retreat. It's about purification through compassion, and we make many physical - and of course mental - prostrations to 1,000 Armed Avalokiteshvara, Buddha of Compassion. Avalokiteshvara was the first Buddha I really connected to, and is still one of my favorites ... along with Je Tsongkhapa, Dorje Shugden, Vajrayogini, Medicine Buddha, and ... well all of them : )
For those of you who are newer to Tantra, it's all about faith and imagination.
I hope Richard's not reading this, or if he is that he's not too embarrassed.