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 firstname.lastname@example.org 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!