4 of 33

Here is a new painting, 12" x 16" on burlap. This is the one that Shayna approves of -- the brown "works" in this one. The other 2 companion pieces are still very much in process.

I had an emotional morning. Mark was asking how I feel about this round of treatment, and I burst into tears. I feel resentful that I have to do this. It makes me angry -- when you go to the Dana Farber Cancer Institute every day for 6 weeks, you know that something is amiss. I walk as the weather is nice and enjoy listening to my i-pod and noticing the first early red tulips and daffodils in their first day of bloom, as well as muscari. Yet this is no fun.

On the way out I stopped by the Zakim Center where they provide adjunct and alternative therapies. I made an appointment to see a nutritionist in 2 weeks. Ideally I'd like to be on an lacto-ovo vegetarian diet, but have always been worried about the B12 vitamin issue. I may also do some acupuncture there for the hot flashes which keep me up at night.

Last night I met up with Abbey and Bill -- old friends from yoga. We met in 1994. Bill and I were romantically involved at that time and I took my first trip to India with him in 1995. None of us had seen each other in many, many years although Abbey and I met once a few months ago. So it was fun to catch up, laugh and re-live that part of our lives. I have to say that Mark is the most understanding husband on the planet -- he never gets fussed when I go out with whoever. He's always invited. I appreciate his flexibility on that issue.

Our department received an email that the manager needs to cut 10% of the budget. I'm hoping that we can all take a 10% hour reduction so no one loses their job. I responded to the group that I'd be happy to do it, although we all have different circumstances. A decision has to be made by Friday. Lean times.

Tonight Mark and I have theatre tickets to see "Trojan Barbie" at the American Repertory Theatre. Mark has been into theatre lately so I'm more than happy to go with him.

3 of 33

What a wonderful weekend. We exhausted each other -- even Shayna fell asleep in the car on the ride home -- and she never sleeps in the car. One of the highlights was taking them to the barn to go riding. I was so weepy with pride and love for them. I wish my parents could see them, too. They rode around the indoor arena a few times, then asked to go out on the dirt road, even though it was rainy and cold. Kaeleen led Shayna on Sparrow, I led Luke on Honey. Honey is the horse I used to ride last summer. Luke was quite confident, asking to trot while I jogged along with the lead. He laughed himself silly. Shayna is more reserved.

This morning was early morning radiation, followed by my monthly oncology consultation. The usual -- physical exam, blood drawn, an injection of Lupron and infusion of Zometa. I read a recent bill and Zometa -- just the medication itself, not including the infusion fee -- is over $4,000. I actually feel guilty having the insurance pay out that much each month. The whole monthly visit is over $7,000.

I'll practice this morning, work the afternoon and meet friends for dinner tonight. Rust never sleeps.

Image: by Lola, 3/28/09, the angels visit an organic greenhouse

MRI - Clear!

My surgeon just called to tell me that all is well. On the MRI they could see the "enhancement" they saw last September, but it's smaller. Last time it was too small to biopsy, so since it's even smaller, we'll just follow-up in 6 months. She also said I don't have to see her Thursday as scheduled.

What an enormous relief.

Having the "angels" here has been super fun. Being with kids can be quite instructive. In zen, they teach, "when you sit, just sit". Kids are the same. When we play Monopoly (which we've played hours of), they just play Monopolopy. How refreshing they are. We're now heading off to the barn to ride. It's raining but they're up for riding outside, anyway. We spent the morning in the studio, very happily.

A wonderful weekend.

Brown

It is so fun to be with the angels. We went to our favorite Chinese/Japanese restaurant last night. Shanya is now venturing into sushi and Luke tried pickled ginger. I never knew of these things until I was in college! We got to the house and I showed them paintings in process. Shayna took a look at a pair I've been struggling with and she said, "auntie, it's the wrong brown!". She was totally right. She then went on to say that I should mix my own brown, so it's a greeny-brown. This morning she saw the third piece, a smaller version with similar shapes and colors. She said, "funny, it seems to work, even though it's almost exactly the same". Again, she's absolutely right! I love being with them.

I have yet to hear results of the breast MRI I did on Wednesday. Results should have been available yesterday. I haven't been trying to contact my surgeon; I figure I'll hear sooner or later. It's not driving me nuts so I'll just wait.

Today is warming and the angels are excited. We have a full docket. We will visit our neighbor Bill who is cooking maple syrup in his sugar shack. Mark was with him all day yesterday and took many photos of the process. The organic dairy, greenhouse, library and studio are all ahead of us. Shayna also wants to do yoga together. She sat in meditation with me last time, for a few minutes.

Aunty is in love.

Image: uncle Mark and the 2 oldest angels

2 of 33

I had a lovely morning. I love to sleep until I'm ready to awaken, not because of an annoying alarm clock. I slept in a little, did my practices. Walked to Starbucks for coffee. (Mark left Wednesday night for our weekend place so I'm on my own for coffee in the morning.) Puttered around the house, then walked over for treatment #2. Here is an image of me and 2 of the technicians in front of Primus, "my" machine. There are 2 at the Dana Farber. You get assigned to 1 machine and 1 team of technicians. One of my techs is Mark. Yesterday I was asking him to show me the field being treated; I commented that I had to keep that part out of the sun. He said I was in good company with him because he's so pale. So when I walked in this morning, I greeted him as "Mr. Pale". He laughed and said he liked nicknames, so told him to call me Lola. He said too bad my name wasn't Layla, as that's his favorite Eric Clapton song. Which led him to play music in the suite. He couldn't find Eric Clapton, so we settled on Bob Dylan.

Now it's off to work. I'll leave work early, pick up the 2 big angels, and drive out west. The kids are excited to spend the weekend with us.

1 of 33

Today was my first radiation treatment on my right chest. I thought it would be 30 or 31 treatments; it will be 33 and my end date will be May 11. My good friend Julie -- we've been friends for over 30 years now -- went with me. It felt really supportive to have her with me, even though I've 'been there, done that'. What a way to celebrate her birthday!

It was quite similar to the procedure for my hip in that they do 2 rounds, but different in that they covered my right chest with a "bolus". A bolus is a square piece of rubbery (and cold) material that they lie over my right chest every third treatment. It "tricks" the machine somehow, and the radiation stays on the surface. Every second day they will put a bolus right over the scar, and every third day there will be no bolus. It is incredibly technical, the positioning, the lasers, the equipment. I feel like I'm on the set of a futuristic space ship. The staff is warm and reassuring. Julie struck up conversations with other women in the waiting room while I was in the treatment room. [They have a separate waiting room for women and for men.] She remarked that it felt really intimate. There's a certain camaraderie amongst cancer patients that I've not experienced elsewhere, and neither did Julie. After wards we took a long walk, basking in our long friendship and the warm sun. I commented that maintaining friendships over the years is the mark of a successful life. She readily agreed.

After that I went to work and stayed late (even though I have promised myself not to do that!).

I stopped by Vanessa and Jolyon's. They surprised me by inviting me to be their daughter Laila's godmother! I was so moved -- and honored. No one has ever asked me to do that before. She is just 4 months old. I intend to take this very seriously and will consider her one of my "angels", just like my sister's 3 kids.

Yoga Journal runs an interview with a well-known yoga teacher in each issue, and here are some excerpts from the May 2009 issue with Aadil Palkhovala.

"Yoga in America is way too asana oriented. Ninety percent of yoga asana is a waste of time. The asana must be done to prepare the body to hold the light of the soul... I want to take an enhanced connection to my soul and knowledge that I've lived my dharma. I want to know that my life encouraged people to take care of themselves. People should believe they are spiritual beings living a human life... I want to share Sri Aurobindo's vision of transforming our life into a Divine life. Invite your soul into every thought, word and action."

I thought that was really beautiful and inspiring.
image of Aadil Palkhivala from www.aadil.com

How To Climb A Mountain

What a day. It actually started quite indulgently. Mark got up first, made coffee and brought me not just 1 cup, but 2 cups in bed. I love that. We left the house at 7am, making our way on the T to MGH for the breast MRI. I had dye contrast injected like the last 2 times. I was lying on my belly, single breast hanging through the cut-out for breasts. The noise of those machines is unbelievable, even with the requisite ear plugs. I tolerate those scans by either practicing metta or deep breathing. I had to repeat one of the 4 minute scans because the image was blurry. I think I was breathing so deeply that it messed up the image.

Those results will be available in 48 hours. I called my surgeon's assistant Jean and asked that she have the surgeon call my cell phone AND leave a message if she can't reach me. Last time we played phone tag all weekend which was excruciating. All through the MRI I imagined that I could feel "something" in my right breast, the suspicious location from the first MRI last September. The mind playing tricks on me. Let's pray for a clean report.

Somehow we got delayed and didn't finish until 9:45, so we then rushed on the T to the Dana Farber, arriving 30 minutes late for what I thought would be my first radiation treatment. We met with a nurse who went through many unexpected details. She gave volumes more information than when I had my hip radiated. I am to use a certain kind of soap, deodorant, avoid the sun on the treated area for 1 year, etc. They did a bunch of x-rays to make sure my tatoos are accurate. Everything lined up, or else I'd be back at the other hospital to be re-mapped. So I officially start tomorrow. If all goes as planned with 30 treatments, I'll finish May 6.

Tomorrow is my friend Julie's birthday, and we have arranged to have breakfast before my appointment. I am blessed to have so many amazing friends.

I just added the link to Elizabeth's Avon Breast Cancer personal page. If you want to make a donation, please consider adding to Kelsey's or Elizabeth's as I have met my minimum of $1800 and Mark is very close.

The piece below was written by my meditation teacher Narayan's teacher. Now that I know his name, I see his work everywhere.

"Some people say that mountain climbers are really wasting their time. They have nothing better to do so they climb mountains, tire themselves out, and come back with nothing to show for it. Yet a person who climbs a tall mountain sees the world and experiences nature in a very different way from someone who never leaves his own front door. Genuine mountain climbers do not struggle up great precipices for the glory of it. They know that glory is only a label given by others. A true climber climbs for the experience of climbing."

-Ch'an Master Sheng-yen, from Dharma Drum

What is your pleasure? Which mountain do you choose to climb?

Image taken by Mark 3/25/09

To Be A Student

It is really fun to be a student again, both of yoga and meditation. Tonight Kande and I went to Liz Owen's yoga class together. (You can read more about her at www.lizowenyoga.com.) I rarely take a class these days, but I'd like to do it more often. I also ran into my photographer who I've not seen in a while. It felt wonderful to be guided through a practice. She taught a few poses I'd never done before including sirsasana III and another pose I didn't catch the name of. In the past I'd take the highest level classes, but now this level II is just perfect. My body has definitively taken a hit between the 2 surgeries and the radiation to my hip. I've lost a lot of flexibility, especially in my right hip. But I'm actually OK with where my body is at this point. It felt good to be challenged physically yet soothed by Liz's voice and pacing. A wonderful evening, topped off by a homemade dinner at Kande's.

We leave early in the morning on the T for my 7:45am MRI at MGH, then will take the T back to the medical area for my first radiation treatment. Tomorrow I will get my 'schedule', i.e. the time of each treatment for the next 30 business days. My calculation is that I'll finish up right around the Avon Walk in mid-May.

The MRI is daunting. It takes a few days for the results to get back. I was joking with Kande tonight that if I need surgery on the left side, I'll go for a boob job. I've always wanted a big cleavage so if it goes that way -- and I pray it won't -- maybe I'll go for the Dolly Parton look. All joking aside, I am very nervous about the results. Like everything else, it's wait and see.

Today another friend signed up to be on the Lola in Wonderland Avon walker team. We are now 4! I'll post her link tomorrow. Elizabeth and I used to work together. We are so thrilled to have her.

Image: Lola sketchbook

Aunt-essori School

For many years now my sister says that she sends her kids to aunt-essori school -- that would be to my house. As in Montessori school. Tonight the angels came to visit and we had a wonderful time painting. A friend had given me a big round piece of plywood, already gesso'd. They were very happy to work on that together. Luke is understanding the difference between opaque and transparent paint, and instructs 3 year old Zoey how to mix blue and yellow to make green. Shayna has taken to my style with lots of dots, connected lines and rock art shapes. Luke likes to glue on bits of dried paint. Zoey shrieks with delight and mixes everything together. Between drying times, they play with the yoga props and had some dinner. My sister is loaning the older 2 to us for the weekend which I'm very excited about. Last time they came, we arranged horse riding, a trip to the organic dairy barn and dinner at the Chinese/Japanese restaurant. I'm not sure who is more excited -- me or them!

Today the hospital where I work asked for voluntary reduction in hours, voluntary lay-offs, voluntary furlough and foregoing some vacation time. I think I will reduce my hours. The timing is perfect -- I'd like a little more time. It may also help avoid staff reductions if enough of us cut down. Of course I'll probably end up as busy as ever, but I like the thought of having Friday afternoons off.
image: wikipedia, Montesorri School

Hooker-Dunham Theater

Last night I was out very late with Karma. We had dinner, then attended a Women's Film Festival at the Hooker-Dunham Theater in Brattleboro. We saw 2 films, both really intense in their own way.

The first, "TO SEE IF I'M SMILING", is from Israel and described the following way: "The frank testimonials of the six female Israeli soldiers in this award-winning documentary pack a powerful emotional punch. At a time when women in the military are increasingly on the front lines, and the actions of soldiers all over the world are being questioned, this film explores the ways that gender, ethics and moral responsibility intersect during war." I've never thought much about this subject, but the interviews were riveting. Each of the women were traumatized by what they had seen, done, and in some cases not done.

The second was difficult to sit through. "THE GREATEST SILENCE: RAPE IN THE CONGO" is described by the theater as follows: "This extraordinary and unforgettable film shatters the silence that surrounds the use of sexual violence as a weapon of war. Emmy-winning filmmaker Lisa Jackson travels the war zones of the Congo to understand why this is happening. There are intense moments of graphic violence, as well as inspiring examples of resiliency, courage and grace." The filmmaker herself had been raped in the US, and with that personal experience, went to the Congo to draw attention to what has been happening there extensively for the last 10 years. The word "rape" as I understand it doesn't really describe it fully -- the women in the film were brutalized, sometimes killed. Raped, yes, repeatedly, then sexually tortured. Mutilated, their insides destroyed with weapons, sticks, whatever. There were interviews at a hospital; in some cases it took a full year in the hospital to recover they they were still left incontinent and destroyed. Wow.

We took another long walk yesterday, 8.8 miles. We're discovering backroads that we didn't know existed.

Wednesday I start radiation. I also have to get an MRI on my left breast the same day. When I had my first MRI on my breasts in September, the tumors showed up on the right side, but they also found something suspicious on the left side, an "enhancement". I had a second MRI a few weeks later with a "compression" device -- I had to take an Ativan to tolerate that procedure. That time they didn't find anything. So now it's time for the 6 month follow-up. A few visits ago The Vixen told me that they weren't going to do any follow-up on the left side. Last visit she changed the plan and said that she does want it followed up. I'll see the surgeon the following week, regardless of the outcome.

So I have a lot of trepidation about this coming week. Metta, metta, metta.

Image: Mark at Billy's farm, preparing for maple sugaring 3/21/09

New Team Member

Remember the post at Christmas-time, about my brother's kids, The Miracles? His oldest, Kelsey, is going to do the Avon Walk with us! She is 19, a sophomore in college. I just learned that she is involved in many do-good volunteer projects including Big Brother/Big Sister, Habitat for Humanity and others which I don't recall right now. She will finish her final exams the day before the walk, will then drive to Boston and stay with us, in order to get up Saturday morning quite early to get ourselves downtown to the Walk. When I was 19 I would have been more inclined to party with friends, but then again, I wasn't a Miracle kid like she is. We're in the midst of getting her personal Avon set up so if you want to donate to the Walk, please fill her account as she needs $1800 to participate.

We drove out to our mountain retreat last night and it feels wonderful to be here. We haven't been here in 2 weeks and I've really missed it. There is still a fair amount of snow on the ground but not enough to snow shoe. It's rather patchy. It's cold, last night 14 degrees. Mark has a fire going this morning.

I'm eager to spend time in my studio, take a long walk, practice yoga and meditation. Tonight I'll go out with Karma to dinner in Brattleboro and then a women's film festival at an art deco funky movie theatre, The Latchis. I've been in touch with the woman who runs their art program. The movie house is downstairs, the hotel is upstairs. I have the option of having a show in the movie theatre itself, or loaning some work for one of the hotel rooms upstairs. In return for loaning artwork to the hotel, they offer a free night of lodging. Both good options!

"When Buddha spoke of attachment, he wasn't saying that it's wrong to have loving feelings toward family and friends—a common misinterpretation. Some newcomers to Buddhism have the mistaken idea that they're supposed to become “detached”—distant
and cut off from the world around them so that they can develop in splendid isolation. In fact, nothing could be further from Buddha's teachings. . . love and compassion, not detachment and distance, are the authentic Buddhist path."

–David Michie, Buddhism for Busy People

Vulnerability

There is a meditation teacher, Sally Kempton, who writes a monthly column for Yoga Journal. In the February issue, she wrote an article in her Wisdom column called "Protective Services". It caught my attention as she talks about vulnerability. She writes, "yoga is contained in the moment you meet your essential human vulnerability and choose to learn from it instead of rejecting or denying it... when you meet your own vulnerability without armoring yourself against it, you begin to discover what I call 'radical openness'... to recognize your vulnerability is to connect with both the mystery of life and the mystery of how life can be so wondrous and beautiful, yet so absolutely terrible...".

That kind of sums up my experience of the last 6 months. It's such a paradox -- to face your own mortality, yet feel so full of life, so open, so happy.


image: Lucy and Lola in front of Shepard Fairey graffiti on 3/17/09

Double treat

Tonight I had a double treat. I attended a dharma talk by my beloved teacher Narayan, and went to the talk with one of my root yoga teachers, Peentz Dubble. I was Peentz's student from 1994 until 2001 or so. I credit her with teaching me practically everything I know about yoga. First and foremost, she taught me discipline which has served me well. In addition, she taught me sequencing, alignment and how to be a teacher. I was her student in a 2-year teacher training program, and she also coached me through the certification process in the Iyengar method. I was her teaching assistant for 5 years. We spent a lot of time together! A mutual friend told her about my health crisis, so she got in touch and we arranged to meet tonight for dinner, then the dharma talk. It was really wonderful to re-connect and to thoroughly enjoy each other. I hope we do so again soon!

Narayan gave a wonderful talk. We first sat for 45 minutes, which was followed by the talk. I just love being in a room with her, even if there are 100 others as well. It was also really cool to share the experience with Peentz. She shared with the group her experience with one of her root teachers, Chan Master Sheng-yen who died in January. She was in Taiwan when he died and spent about 2 weeks there through the death ceremonies. She told us about a book he wrote called Footsteps in the Snow which I will order. It was an inspiring talk. I now have the jones to make a pilgrimage to Asia to some of the Buddhist sites. She opened the talk with a quote from her teacher. "By chance" I posted it on this blog a week ago!

She told us about how Chan was practiced in China, the precursor to Zen in Japan. I'd never heard of Chan so I learned a lot. I am so excited about this area -- Budhhism and meditation -- and feel so fortunate to have access to a dynamic center with my special teacher. As well as like-minded friends who want to explore this rich tradition as well.
image: www.cooper.edu/organizations/clubs/meditation/founder.html. This is a photo of Chan Master Sheng-yen.

First crocuses

I'm having my last flurry of activity before radiation starts next week. Lucy met me for lunch which we usually do on Tuesdays. It's warming up here in Boston and we enjoyed a brisk walk, noticing the witch hazel and crocuses in bloom as well as daffodils attempting to make their way into this world. Spring, especially early spring, always brings Lucy to mind.

Today I spoke to Betsy, an old high school friend, the first time we've heard each others voices in 30 years. One of the silver linings of going through through this challenge has been re-connecting with old friends.

And speaking of old friends, tonight I met Lisa for dinner. We've been friends for 25 years. We met through her brother. I was job hunting and met him in an elevator. He later introduced me to Lisa, and we became roommates for a few years. We are part of a big gang who all worked together in the early 1980's. Oh how I love old friends.

I am enjoying this while it lasts -- the freedom to work all day and run around in the evening. I don't want to anticipate exhaustion with radiation, but it's pretty universal.

Another funny thing that happened today is that I ran into a formal prenatal yoga student. Somehow her name popped into my mind immediately. She had her 10 month old beautiful baby boy with her. She again thanked me for a wonderful class. I do miss teaching but it doesn't feel time to go back just yet. One of these days....
Image: lola, taken 3/15/09

Salon Cu

Some friends get their hair cut at a trendy salon in Somerville, Salon Cu. They told the owner about my art work, he looked at my web site and came over tonight to take a closer look. He wants to hang some of my really large pieces there as well as a few small ones. He takes no commission and has lots of traffic. He and his wife might also be interested in a piece or two for their own home. I haven't put much effort into showing work these last months so it's nice when things come my way without much effort.

I got called on to babysit tonight while my sister attended a work function. They are incredibly noisy and a total delight. They leave the house a whirlwind and we all enjoy every minute of it. Tonight Shayna was paging through The Art Book and identifying her favorite pieces. She liked Kandinsky. Not bad for a 7 year old.

Our Avon Walk training is going great. Yesterday we walked to Boston College, another 8.5 miles round trip. It was a warm, beautiful day in our fair city. We're enjoying both the fund raising and getting in shape together.

The Middle Place

My friend Julie from high school sent me a utube link to a Kelly Corrigan reading. She wrote a memoir called "The Middle Place". I just finished reading the book. It's her story of breast cancer which runs parallel to her father's cancers. It's about transitioning from being the daughter of a father she adored into being a whole person in her own right. What I loved about the book is her tone -- she is so real, so open. She readily shows her vulnerabilities, holds herself very lightly. It's a compelling story, difficult to put down. I stayed up too late too many times trying to finish it.

At the very end she wrote her acknowledgements in the following way: "if you want to write a book, here's what I recommend...". She then went on to list all the staff who helped her at Voice - Hyperion Publishing. When I started this blog, so many people told me that I should write a book, based on it. Reading her parting note, it has planted a seed.

Arnold Arboretum

We're training. Today we walked 10.4 miles. We walked through the Arnold Arboretum which belongs to Harvard. There were lots of people out as it was relatively a heat wave here -- in the 50's. We ran into our friend Karen so she accompanied us for part of the trip. I feel tired and stiff and can't wait to get on my yoga mat. I wonder if having cancer is affecting my overall energy level. Back in the day (prior to August 2008), it was always me pushing us to go faster, further. Now I have to ask Mark to slow down, to be less ambitious. It's taking some getting used to.

Tonight we got invited to a party, a friend's 50th birthday party. I love parties and am looking forward to it.

The hoped-for Brazil trip isn't going to work out. It takes at least 4 days to get a visa and my friends are traveling in any case. So instead I'll spend time out west, painting and perhaps some garden preparation. Although last time I checked, there was still a foot of snow on the ground.

Radiation will start 3/25, a week from Wednesday. A friend from work has offered to give me some of her sick time hours which is incredibly thoughtful. This time I plan on taking more time off and being gentler with myself. Last time I soldiered through, which is how I typically handle situations. I am a student, learning how to live.

6 new tattoos

Today was a strange one. I went to work for a few hours as I needed to attend a meeting which in itself was sensitive and called for a cool head. I met with my manager and told her that I will be doing a another long course of radiation and will need to take more time off. She was wonderful and encouraged me to be good to myself, to take it as easy as possible. This time I won't push myself so hard to work full-time. I will give myself more room to rest and ease up.

At noon I was at the hospital, radiation oncology department, getting "mapped". I spent more time in a scanner in order to plot the radiation beams. They use lasers and computers to plot the coordinates. Dr. Jen said, "you have a good chest". She has a funny sense of humor. I said that I had been complimented many times in the past on my breasts, but never my chest. She said it was well-shaped and easy to plot out. What a funny perspective.

It was actually quite surreal to be there again. The front desk staff looked surprised, asking me what I was doing back so soon. They were trying to be kind, but I felt like a failure. I've been asking myself -- what AM I back so soon? I had this idea that I wouldn't see that place for a long, long time. Even though I now know the drill, this time I felt more uncomfortable. I didn't like having my chest exposed to a room full of technicians. They also took photos which I don't remember from last time. My arms were over my head in these supports. I felt totally exposed, vulnerable. My chest is all marked up with red Sharpie dots and dashes, as well as 6 new tattoos. My body is feeling less and less mine, and more like a medical tutorial.

I left feeling exhausted and grim.

Then I spent the afternoon gallery sitting in East Boston. It was fun as there were lots of people in and out. I spent some of the happiest times in my life in that building when I had a studio there. One of my friends became tearful over this next round of treatment; we shared a good cry together.

Mark and I then had a date tonight. We ate crepes and saw "The Reader" which was a really intense movie. What a day.

We'll stay in town this weekend. I need to stay put for a few days and cool out.
image: staff at radiation oncology, Mapping clinic, Brigham and Women's Hospital

Dr. Jennifer Bellon

Meet my new breast radiation oncologist, Dr. Jennifer Bellon. I brought my camera with me to the visit but the battery was dead. I'll take some photos of her tomorrow. So... the whole team is recommending that I do a long round of radiation to my right chest and above the collar bone. The Vixen, my breast surgeon and now the radiologist. Why? Although there are no statistics available for my exact profile (always on outlier), radiation now may improve survival... but it also might not make a difference. If the cancer hadn't spread to my hip, I would have done chemo and radiation. If we take out the spread factor, I would have a recurrence rate in the chest of 20-25%. Doing rads cuts that down by 75%. It might decrease the source of the spread.

This will be a little longer treatment, 30 or 31 treatments, Monday through Friday. The side effects are more or less the same as to the hip (fatigue, skin burn). If I were to want reconstruction in the future (which I don't), I would need to use my own flesh, not an implant. The funny thing she said is that I may be too thin -- I liked that!! -- to be a candidate for tram flap reconstruction. I always search for the light notes of these conversations.

There are other scary potential side effects which I won't focus on because they are rare -- pneumonitis, fragility of the ribs, lymphedema, death from lung infection.

I'm going to go for it. Mark supports my decision either way but leans heavily in favor of taking whatever treatment I'm offered. Tomorrow I'll go in for "mapping". They'll put me through a CT again and take precise measurements and mark me with more tattoos. They actually have physicists on staff who do the calculations.

This doctor is my kind of gal. The Vixen chose her, and chose well. Again, another super smart person with a warm personality. It turns out that we live in the same neighborhood and she told us about an obscure deli that we've never tried. I said I want to take a vacation before starting treatment (March 25 at the earliest) and when I mentioned Joshua Tree, she said that it might be too risky to go without my doctor. She's fun. I'm actually hoping to get to Brazil in this small window of time. My last 2 trips were aborted for various reasons -- I'm hoping the timing will work out this time. Let's see how this all plays out.

Image: Lola. Taken 3/7/09.

Breast Radiation Oncologist Tomorrow

I got a call this morning from the breast oncology scheduler. I am to see a breast radiation oncologist tomorrow morning at 9am. The call felt like an assault. I don't feel prepared for this. Just this morning for the first time I was able to fully straighten my right arm in a full backbend. It seems like I was on one track, and now am onto something totally different. If I decide to proceed, Friday I'll be "mapped". I'll spend a few hours getting new tattoos on my chest, the markers for the radiation.

I called The Vixen tonight and what she said didn't reassure me that much. She said that because the cancer started in my breast and affected a lot of lymph nodes, that I am at high risk of recurrence on my chest wall or arm. The chest wall is inoperable. So in some ways it's positive to have this treatment. As she said tonight, "I'm betting on you". At the same time it makes me really scared of the "what if" scenarios.

I feel enormous tension in my body. This feels hard and scary again.
image: Lola. Taken 3/7/09.

Coupon Books

Yesterday we received our Avon Walk package including coupon books and our walk t-shirts. We are very excited about this event. Our fund raising is going great and we hope to still recruit others to walk with us. We clarified that we will be expected to walk both days and to sleep in the tent city on Saturday night. If we want to do 39 miles, we can do 26 day 1 and 13 day 2. Based on how tired I felt on Sunday after just 8 miles, I think that 13 and 13 will be quite enough.

Now I just hope that if I do radiation, I will be feel energetic and strong enough. I'm feeling ambivalent about it but will almost assuredly follow The Vixen's advise. I am waiting to hear from her with a consultation appointment with another radiation oncologist.

Tonight my sister brought over The Angels. I haven't seen then in a while as last week one of them was sick. Aside from the little one peeing on my beautiful wool rug... we had a fun evening. Luke the 5 year old is getting very enthusiastic about chess and plays a pretty good game. He knows how each piece moves and can strategize a few moves ahead. Which is more skill than I have. I keep waiting for Mark's keys in the back door to relieve me of chess duties. I'm not much of a board game person. Shayna the 7 year old likes to keep to herself sometimes and was busy writing a 4-page book with planets and stars.
Image by Lola. Taken 3/7/09.

More radiation?

The Vixen just called unexpectedly. She spoke to my breast surgeon (I knew that was going to happen) and they have a recommendation: they think I should do another long course of radiation to my right chest (where I had the mastectomy). 28 radiation treatments. That about killed me last time. I was so utterly exhausted. I am feeling most excellent, so was taken aback by this, although we've discussed it in the past. They recommend more treatment because I am doing so well. The hope is control the disease with Tamoxifen, but the worry is that since the cancer originated in the breast (and I had a lot of positive lymph nodes) that this is a way to ensure a better outcome, i.e. not getting more cancer. They also think I should get the left breast MRI as previously planned, just in case.

The Vixen is calling my radiation oncologist to see if I need to see him for follow-up next Monday as scheduled, or whether I'll be referred directly to a breast radiation specialist. In a way I am really bummed because last time it was so exhausting. My incision still feels tight and I'm not thrilled with the idea of more treatment. I am just getting my chest opened up for full backbends. My hip still feels really tight from the radiation to that spot. I am training for the Avon Walk! (By the way, we walked 7 miles on Saturday and 8 on Sunday.) It will kill my social life. Last time I was home in bed by 8:30 every night. No fun! Plus excessive radiation can potentially cause cancer.

On the up side, doing this radiation treatment will statistically improve my odds of avoiding a recurrence. And at least this time I can walk to the hospital -- I'm not on crutches and the weather will be welcoming. Oh boy...

Image: Lola. Taken 3/7/09. Have I said how much I love trees??

Long Term Intention

More from Jack Kornfield... "Long term intention is called dedication... setting a long-term intention is like setting the compass of our heart... The fruits of dedication are visible in the best of human endeavors... These overarching dedications set the compass of our life, regardless of the outer conditions. They give us direction and meaning... When we read something like this, it is inspiring. It touches our own innate nobility and courage. But it can also bring up guilt and self-doubt. What about me? Am I doing enough? ... It is good to question our own dedication, even if it makes us uncomfortable. To what have we dedicated our life? Is it time to rededicate our life? ... We have to be true to our own way... By aligning our dedication with our highest intention, we chart the course of our whole being. Then no matter how hard the voyage and how big the setbacks, we know where we are headed."

More and more I question how I spend my precious time and energy. Everyone's time and energy are precious. I feel more urgency now, to spend my time wisely.

Yesterday we walked 2 hours, about 7 miles. Today we will do the same. We are thrilled with the financial and moral support we are receiving for the Avon Walk.

Image: Mark. Lola and Tony on 3/7/09.

rope burn

I'm really enjoying Jack Kornfield's book "The Wise Heart". In the chapter entitled "Suffering and Letting Go", he comments, "suffering is like rope burn. We need to let go". That really struck me. As I commented a few days ago, I struggle in certain aspects with anger. I have ideas about how others should behave, which leads judgment and criticism - and unnecessary suffering for the other person and myself. What I'm working on is letting go of my "conditioning", i.e. my expectations and ideas about how others should be. From a psychological perspective, I can explain until I'm blue in the face that it comes from my family of origin, etc. But what really matters is how I relate to the anger. So that's my work for now. Letting go, letting go, letting go. It's strange that I don't struggle with having stage 4 cancer. Somehow very early on I moved into acceptance (but not giving up). It's the other stuff I struggle with.

My sister got back the results of her mammogram and she is clean. However, I just got an email this morning from another friend with news that a mutual friend just got diagnosed. Shit.

Last night Mark and I attended an opening at the Windham Art gallery in Brattleboro, Vermont. I have 12 pieces in a collage show. Mark's dad and brother are here with us this weekend, visiting from NJ. His dad is 85 and still up for a weekend away. He was so funny, having a blast to be in a new environment. He is mostly deaf, but loves to tell stories to whoever will listen. He is a World War II vet which is the source of most of his stories. At the opening he told story after story about how difficult it was to bomb his Italian cousins (his parents were immigrants from Italy) during the war; how he rescued a young girl from drowning when he was a teenager; working a paper delivery boy.

Mark's brother loves to walk so will go with us on our long training walk today and tomorrow. It's warming up, but the snow is still a foot deep here. Spring is in the air, we move into daylight savings tonight. My lifeforce is strong.

New Members Show

Tonight I attended a wonderful opening reception in East Boston at the Atlantic Works Gallery. I had been a member there in 2007, left in 2008, and returned this year. There are 15 new members so everyone got to show a few small pieces or a larger work. It's difficult to put together a good group shows, but this one is exceptionally fine. It was very well attended, the most people I've ever seen in the space. I showed my new painting "All of Me" which is my nude torso. It felt really right to show it publicly. I posted an image of it several weeks ago. I am very happy that I decided to return as a member. Lots of energy and support for each other's work. I am inspired to make some 3-dimensional work for a future show as the ceiling is very high and just begs for something dangling from it.

Our fundraising efforts are going gangbusters -- so far I have raised $1,000 for the Avon Walk. Mark has brought in $700. We have some friends interested in joining us as walkers as well. We are both very jazzed about this event which holds a lot of meaning to us.
image: Lola's sketchbook

Make Your Own Way

Tonight I was able to meet with my meditation teacher Narayan. It was our 4th meeting. It was wonderful to see her again. She had spent the last few months in Myanmar and Taiwan. I really missed her and thought of her often as I send her metta every single day. I had prepared a list of questions as I usually do, but our conversation took an entirely unexpected turn. She told me a story about her time away that she shares only with the more experienced yogi group. I was very flattered to be included. It had to do with lineage, transmission and death. I feel such a bond with her and so happy to have found such a wonderful teacher. She asked me some unexpected questions so we had a much richer discussion than if I had gone through my list of questions. She encouraged me to stay with metta, but to begin to work with the "wisdom" aspect in daily life.

One of my strong feelings of late has been anger, and she was helping me to work with that energy, that feeling state. I said how ironic it is that I'm practicing metta and am feeling anger. She said -- excellent progresss! I'm really curious about how different it is to work in a spiritual way rather than a psychological way. She said that feeling angry is not a problem, but rather the problem is identifying with it. Which began to lead into a discussion of "no-self". In spiritual practice, the way to work is to not identify with the feeling state. She advised to get quiet and curious when strong feelings arise, and to watch it without an agenda.

I am going to try to attend her Thursday morning retreats that happen on an irregular basis. I have a lot to learn and she has a lot to share. I am humbled and inspired.


"Hikers know that there are no passable roads in a virgin forest. However, a road will open up when you pull away the grass, thorns and wisteria. Swimmers know that there are no paths in the water, but as you swim you will create a pathway.

Cultivation is similar. You only need to get on the path and walk and you will create your own path. The roads walked by the Ch'an patriarchs are theirs, not yours. You must depend on yourself to open up your own road."

-Ch'an Master Sheng-yen, from Dharma Drum

image: dharmadrum.org

The Sound of Ice Melting

I am reading Jack Kornfield's "The Wise Heart". In Chapter 15 the header quote is, "Hey there. You've been asleep for a long time. Isn't it time to awaken?". This was written on a sign on the entry path to a monastery in Thailand where the author spent 5 years in the 1970's. I think about this idea frequently -- how to continue to wake up so I can live fully.

Last week at the Guggenheim exhibit, all of the work in "The Third Mind" show was linked to Asian influence. The image here is of a work entitled, "sound of ice melting" (1970) by Paul Kos. It's installed on the ground floor. When I first saw it, I thought it was a set-up for a musical performance. Upon closer inspection, it was part of the show! There were 8 microphones aimed at two 25 pound blocks of melting ice. Much of what we saw was influenced by Buddhism, particularly zen. I imagine that this particular piece is meant to bring us to the present moment? The brochure said, "it was a way of slowing down the mind to become aware of one's ambient environment as a live sonic event".

Today was a long one at work. I arrived very late yesterday due to the storm so was trying to catch up a little tonight. The highlight of the day was driving to East Boston to deliver a painting for the group show which opens on Thursday. I was hoping to see "the angels" tonight but one of them was sick which was very disappointing. Too long without spending time with them is unbearable.

Image: lola, Guggenheim Museum, NYC

Being In the Moment

"It is often the case that whatever we are doing, be it sitting, walking, standing, or lying, the mind is frequently disengaged from the immediate reality and is instead absorbed in compulsive conceptualization about the future or past. While we are walking, we think about arriving, and when we arrive, we think about leaving. When we are eating, we think about the dishes and as we do the dishes, we think about watching television.

This is a weird way to run a mind. We are not connected with the present situation, but we are always thinking about something else. Too often we are consumed with anxiety and cravings, regrets about the past and anticipation for the future, completely missing the crisp simplicity of the moment."

--B. Alan Wallace, Tibetan Buddhism from the Ground Up

I love getting these daily emails from Tricycle.com. You can sign up on their web site and request this free service.

We've had another huge snow storm which has delayed either of us getting to work. Mark is outside with the snow blower and I am expected to be on the shovel brigade. This is the first time this season that I've had to help -- until now I've been on crutches or recuperating from radiation. No excuses today...

We have both received $200 towards our fund raising for the Avon Walk. Thank you! Once I hear back from Avon and set up our "team", I will send out a big email with an opportunity to join our team as a walker or to contribute money. We are now 3 -- Ann wants to join us although she wants to run it. Wow! It will be all we can do to finish the walk.

Image: Lola. Interior of Guggenheim Museum, NYC.

Eastern Square Dancing

Last night we stepped back in time. The evening reminded me of growing up in rural Iowa in the early 1960's. The dinner was served family style in the Town Hall basement. The menu: ham, glazed carrots, potato salad, baked beans, sliced white rolls with beverage choice of apple juice or water. Pictured here is the "sugar on snow" dessert. The server brings out a bowl of snow. [On our walk we saw our neighbor farmer on his tractor; we later learned that he was gathering snow for the dessert.] You then pour heated maple syrup onto your bowl of snow in a thin layer. It quickly cools and becomes "taffy" which you scoop up with your fork. Alongside you eat sour pickles and plain donuts to balance out the sweetness. It was a memorable meal.

Then it was upstairs to the dance. There was a 5 piece band with a caller. The band members were all older people, maybe in their 70's. The only younger musician played piano. The style is called "eastern square dancing" as opposed to "western square dancing" or "contra". We fumbled and laughed our way throughout the evening. It was great fun and the other dancers were quite tolerant of us. Between sets, couples danced, "round" style. We didn't dare. The dance was quite vigorous, leaving us breathless, sweaty and in search of water.

Today's outside chore will be to prune the apple trees. It is to be done in late winter. I really have no idea what I'm doing but will attempt it anyway. Each year we learn a little more about gardens and orchards.

This week I have an interview with my meditation teacher Narayan. I haven't seen her for several months so am looking forward to it. Thursday I will attend an opening at the Atlantic Works gallery in East Boston. I am a returning member but will be in the New Member show. I'm still not sure which piece(s) I will put in. Friday we'll attend an opening in Brattleboro, VT where I will be in a collage show at Windham Art Gallery.

And we hope to start clocking some training mileage in preparation for the Avon Walk.

Image: Mark