Rogaine Ain't Gonna Help - Various Thoughts on Hair

My hair has started falling out. Don't be surprised when you see me in a scarf or hat next time, minus hair.

Or I may be "buff." Uma recommended this versatile headgear designed for outdoor/active types known by the brand name Buff. My outdoor friends all knew of it. In the past, I've worn mostly scarves and some "chemo hats," some from places that always have brochures where women and chemo hang out.

Buff of Canada has a range of patterns - from Grateful Dead to fishscales to beautiful, stylish prints - and a few different fabrics (fleece, Merino wool, Coolmax, etc.) and are designed to be versatile ("can be worn as a neckerchief, headband,wristband, mask, hairband, balaclava, scarf, scrunchie,saharaine, pirate cap, beanie and bandana").
For a Buddhist the nice thing is that with the tube-shaped buff, unlike a hat, you can open the top of your crown when you're in the meditation room, which at least symbolically helps you receive the blessings.

***
I could tell gravity was pulling extra hard on my hair from the way my scalp started feeling a few days ago - sensitive to the touch.
Yesterday, a bit came out when I was washing my hair, with more in the comb afterward.

I've been through this twice before, so it's a bit "old hat" (or is it new hat, time for a new one?). I have to say the first time it is a bit traumatic. And I am not someone who spends a lot of time on my hair, or any other part of my physical "image" - to state the obvious. Imagine what it's like for most people: Hair can be a very big part of your identity.

***
It's disturbing to wake up and find all this loose hair on your pillowcase, and during the day it gets to be a nuisance to "shed" so often. Our dog already covers the house with her fur.
What I - and many others - find is that it's better to just cut it, then shave it off (Richard wielding the clippers in the bathroom) and then get on with being bald for a bit. Trying to make your hair last doesn't seem to help.

***
Getting your hair shorn off by a friend may remind the nuns reading this of their first buzz-cut on the way to becoming ordained. It's a big symbolic step, and I can only assume there's some trepidation involved for some, but I wouldn't really know. I do remember that Dachog threatened to do a 2-stage process, with a neon-colored mohawk as the middle step. (For those of you who don't know, Dachog is a Kadampa Buddhist nun who got ordained in her 80s; she's my amazing "pseudo mother in law" [Richard's mom - mother of 5!])

***
The experience is good for my compassion. I know it's a fear of a lot of middle-aged men to go bald. I'm going through the process quite quickly. (Just like I went through women's middle-age "crisis" menopause, through surgery, quite quickly.)

***
There are people who decline chemo because the chemo drugs they need cause hair loss. (By the way, not all chemo drugs do.) Sad. No potentially life-saving treatment because you'll be a few months without your hair? When there are many comfortable wigs you can wear, that very few people even know are wigs? There are even wigs you can get made from your own hair (though they're pricey).
When I was getting chemo one time, the nurses were talking about a women who refused chemo because she didn't want to lose her hair. For her, the chemo was supposed to be 95% effective at giving her a cure. A couple of years later, her cancer came back and she wanted chemo, but the odds were much longer then.

***
Arjuna told me about a coworker - a Leo (big personality) - beautiful - not just a cosmetologist, but a teacher of cosmetologists. When she was initially diagnosed with cancer, she was in denial for a brief time ("this is not happening to me!"). Then she swung into gear and embraced it - she had a big party to cut off her hair before it fell out to chemo. Friends, in solidarity, shaved their heads bald. I think she now helps others have a joyous time while they're losing their hair.

***
Thankfully, as I told the radiation techs, my hair isn't my best feature.
I told them my brain was, so that they'd take extra care with me.
You'll have to fill in the blank what you think my best feature is .... or are you still looking for one?

Genetic Testing - Important!

I'm adding this here as a public service. If you have a history of cancer in your family, you should look into getting tested. I probably should have done it 3 years ago, after legislation passed that protects you from health-insurance discrimination (GINA, Genetic Information Nondiscrimination Act - http://www.genome.gov/24519851). Note: but not from life-insurance, disability, etc. discrimination. If you already have them, you're fine. There are strategies to get coverage and then get tested.


This is a copy of what I wrote for my family.

Here's a very important subject that should be of interest to everyone in my family: Yesterday Richard and I went to an appointment for genetic counseling, then I gave blood to be tested for BRAC1 and BRAC2, the two breast-cancer genes they've identified so far (well, there are others, but don't apply given our background).
There's lots to say about this. So much info. So many implications. 
Results in about 2 weeks, and of course I will tell you all about it. [Delay if insurance doesn't want to pay for it - it's $4,000 each test! But when family members go to get tested, it's much, much cheaper, because the lab knows just where to look - they don't have to sequence your whole DNA. By the way, there's only 1 lab in the US that does the testing - Myriad Genetics in Salt Lake. - tell family later - M]
Here's a link in the meantime:
http://www.swedish.org/Services/Cancer-Institute/Services/Cancer-Genetic-Counseling-Tests 
It has info and shows a video of the guy we met with, Bob Resta. 
He was excellent - and funny!

Here's a book that Resta recommended and we got to look at in his office. Swedish also has it in their lending library. If you want a copy, I will send you one (we get free shipping from Amazon).
Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer
http://www.amazon.com/Positive-Results-Making-Decisions-Ovarian/dp/1591027764/ref=sr_1_1?s=books&ie=UTF8&qid=1295621792&sr=1-1 

I am also going to bank my DNA, so that when they learn more about genes, you will always be able to access it. It only costs $150 to bank it in perpetuity.

More to come ...

Changing Attachments - Drinks

My most obvious attachment has long been black tea with milk. I looked forward to a nice cup when I got out of bed in the morning, and a nice cup in the afternoon. I used to drink 3-4 cups but have cut back, partly at the suggestion of my acupuncturist and other health experts. I'll substitute a green tea for one of those cups. I take the Chinese herbal (medicinal) tea that my acupuncturist prescribes - which typically don't taste that bad - as another serving of tea or two.
As you may have heard, chemo tends to change your taste buds. Now black tea doesn't appeal very much. The tea and milk are exactly the same, but the experience is different.

I used to think about it: What is it about the tea brings me happiness? Years ago I remember Karl in our TTP Buddhism class talk about analyzing what your attachments represent for you. For me, tea with milk is comfort. Not only that, but if you have a problem, it seems to promise to make it better!
For other attachments, money represents security. Approval from others represents love. [There's a whole essay here I could write but don't have time for. Hope you can follow this "draft."]
I feel quite at home when I visit England, because English society knows this curative ability of tea : )

But you look at it: Hot water, with some flavoring? How could it possibly do that? Solve my problems? Not for very long, anyway.

As a Buddhist, you try to be mindful of what you're doing. While you're drinking, you may enjoy the first few sips, then you might lose your attention. You may not even finish it all, or it's a bit of a duty - just to get rid of the liquid. You even let it get cold, and simply swallow what's left as you're taking the cup to be washed. Or  it's really nice and you are paying attention, you're already anticipating another cup while you're enjoying the cup right in hand! We are funny creatures.

So our Buddhist practice is transforming our daily practices into the spiritual path. We don't give up drinking tea, but we don't believe it can help in a way it won't. If we'd like a cup of tea, and there's no tea, it's OK.

I love the Tantric practice of offering everything we drink (and eat) to the Buddhas at our heart. I try to do that often, and get reinforcement because we just studied Guide to Dakini Land, we're now on Mahamudra Tantra, and January is Heruka and Vajrayogini month. Sangha help remind me of the practice when I get forgetful. Sangha! Where would we be without them?

But cancer is also very good for renunciation, so I tend to think of what I drink and eat as fuel for my "ambulance" (my body as a vehicle to help others, but it needs to be taken care of). When you're on chemo - or radiation - you have to pay attention to your diet. Everyone should drink lots of pure water, but especially people on chemo, to  help flush out the toxins. Usually I have no problem drinking water, but now it doesn't taste that great. I often drink because I should, not because I really want to. I like a splash of juice - at the moment I really like a splash of an organic berry mix in the water. When I get tired of that, a splash of lemonade is next.

Food will be like that too. Even if you're not having nausea or vomiting, the chemo usually does something to your appetite - you just don't feel like eating, just at a time you need your body to have lots of protein and other healthy foods so that it can handle the drugs. When my Mom had cancer, my Dad tried so hard to find food that she would eat. She'd finally say OK to something, and then couldn't eat it when it arrived 20 minutes later. It can be really hard for your caregiver.
If you've been following this blog, you saw that at the moment, that isn't a problem, because I'm taking the steroid drug Decadron, but don't be surprised if I write about food at some point.

Celebrated Richard's Birthday

Wonderful time with Richard's family.

His sister Susie arrived this afternoon from the Okanago, then his niece Maggy from the UW this evening; Dachog came last night too.
(Susie is helping 2 men in their family celebrate b-days: She leaves tomorrow at 4am for her flight to Baltimore via Chicago, to celebrate an even bigger birthday: Their Dad's 90th! Wow! She's meeting up with their brother John and his family, who are flying in from Florida. I'm glad some family can go party with their Dad in person.)

Susie and Dachog "catered" us with Greek food. Greek fries with feta! Spanakopita. Dolmathes. Babaganoush. Hummus. Roasted red peppers. Greek salad. Caesar salad. Rice pilaf.  Red-pepper spread. Moussaka. Falafel (or "feel awful" as Richard calls it, even though he likes it : ).

Maggy gave Richard the Apples to Apples game, so they all had great fun with that between dinner and dessert while I enjoyed them from the couch – resting. It was funny not knowing the game and overhearing shouts of “ludicrous!” followed by “Jessica Simpson,” then laughter. (Remember that Je Tsongkhapa laughed for 3 days when he realized emptiness? I am so looking forward to that, and like to think that each laugh will help get me closer.)

At my own radiation treatment (RTX* to those in the know), Linda at the front-desk and my rad techs know Richard and sent b-day wishes home with me.

* "Mags" has 2 midterms tomorrow morning. She said for her world public health / economics class (not the real name of the course, but sorta close?), she has to memorize a bunch of acronyms. Maybe that's why it popped out here.
I went to a small liberal arts college where we studied subjects like Geology and Calculus. Maggy has these interdisciplinary classes that have long names like "Population Metrics in Global Health"; that's my excuse.

Buddhism & Politics: Sri Lanka and "A Great Deception"

No religion, not even Buddhism, should be mixed with politics.
I'm so sad to report that contemporary Sri Lanka shows an example of why.
The current issue of The New Yorker has a long article about Sri Lanka, "Death of the Tiger: Sri Lanka’s brutal victory over its Tamil insurgent."
I spent a month in Sri Lanka in Jan 1984, so it is close to my heart, and the news makes me very sad. Sri Lanka seemed in many ways like paradise. A group of us students toured with a grass-roots group that was working on sustainable development and peace.

You don't need to read about Sri Lanka. I'll just tell you that the majority Sinhalese are Buddhists, and the government was making life hard for the Hindu Tamils, as well as the Muslims there, in many ways that are familiar all over the world. There was a awful war, and what's worse is that the brutal tactics used may become the method for others to deal with terrorism.

Most Americans understand the need to separate religion and politics. They may think that religion is to blame. But every real religion believes in peace and tolerance, love and compassion. Bad things are bound to happen when religion is combined with power.
You may have heard of the new book called "A Great Deception," which has a lot of history about politics and Buddhism in Tibet. There's also a great website about the issue: http://www.agreatdeception.com/
Part of me would like to pretend that none of this ever happened, is not happening, and is not going to happen in the future. Because I care about Buddhism - pure Buddhism, without politics - I see why it's so important to explain the situation, so that Buddhism can flourish despite these obstructions. Think for yourself.
Reading about Sri Lanka, I understand again why we need the book so much right now.

Eating, Eating, Eating

This is one of those daily-life, nuts & bolts posts that can give blogs and Facebook and Twitter a bad name. But in case anyone is wants a little window in my life with cancer, here's a current view of my diet.
You may have heard that it can be hard to eat when you're on chemo - foods don't appeal, even drinks taste funny, nausea and vomiting threaten. That's all true. I experienced a bit of those in the past, and probably will again in the future.
Right now, though, I am eating like a football player - big meals, several times a day!
It's the Decadron steroid, which keeps the swelling down in my head. It also makes me ravenous, bossy, and insomniac.

Saturday 

Breakfast - I had homemade colcannon (Irish potato, cabbage & cheese) that Richard made, along with a hard-boiled egg. He boiled up a bunch to have on hand - easy for me to grab some protein, especially in the morning. (I hope my acupuncturist is reading this. She recommended getting a lot of protein first thing, and we have rice protein powder supplement on hand at her recommendation. It's good for adding to oatmeal and drinks.)

Second Breakfast (as they say in Hobbitland) - Because I should take the Decadron with food, I had a bowl of Richard's homemade apple crisp (Granny Smith apples his sister Susie had brought us, with oats and walnuts and not much sugar or anything else).

Lunch - vegetarian Thai buffet in the University District with Richard and his niece Maggy, who started at the UW in the Fall. We got to see her new dorm room, too. As Richard said, it has the best views of Seattle of anyone we know: Lake Washington, Mt Rainer, the Space Needle!

Snack - On the way out of Maggy's dorm, we got to see the cafe downstairs where Maggy works part-time, and I caught a whiff of pizza, so I got a Pagliacci cheese slice to go. (Remember this is not too long after a buffet lunch!)

Dinner - Dachog and Cecilia T (visiting all the way from New Mexico!) had dropped off vegetarian sushi and olive hummos with pita crisps.

Now it looks like we could be spending more on food than on medical bills!

So many people have already offered to bring us food. It's so wonderful! I wish everyone had this kind of support. It's not really the food, you know.

We have so many people bringing food, I thought I might need to reign you in, but apparently not while I'm on Decadron. Richard is literally shopping for a larger fridge.

Even his brother John, who lives in Florida, seriously offered to fly out next weekend and make a big batch of minestrone! John is Maggy (and Lizzy's) Dad, Vicki's Husband, with a demanding full-time job. He's already  visited twice in the past several months. We got to tell him how many local people were feeding us.

There's lots of info about eating better during chemo.

Here's one link: http://www.chemocare.com/eatingwell/tips_for_managing_eating_problems.asp

For reference, we also have a copy of The Cancer-Fighting Kitchen, which you are welcome to borrow. It's visually very appealing.

"People Never Really Die" - View from Haiti

A highly recommended short piece in the latest New Yorker by the Haitian-American writer Edwidge Danticat.

If you've looked at the news recently, you probably seen an update about Haiti, a year after the earthquake, and more recently with a cholera epidemic, on top of every other daily struggle for existence there. Danticat grew up there and has family there, and is able to convey some of the spiritual meaning for them, including voudou and spirits and going "anba dlo—under the water."

Here's an excerpt:
“In Haiti, people never really die,” my grandmothers said when I was a child, which seemed strange, because in Haiti people were always dying. They died in disasters both natural and man-made. They died from political violence. They died of infections that would have been easily treated elsewhere. They even died of chagrin, of broken hearts. But what I didn’t fully understand was that in Haiti people’s spirits never really die. This has been proved true in the stories we have seen and read during the past year, of boundless suffering endured with grace and dignity: mothers have spent nights standing knee-deep in mud, cradling their babies in their arms, while rain pounded the tarpaulin above their heads; amputees have learned to walk, and even dance, on their new prostheses within hours of getting them; rape victims have created organizations to protect other rape victims; people have tried, in any way they could, to reclaim a shadow of their past lives.

http://www.newyorker.com/talk/comment/2011/01/17/110117taco_talk_danticat