Another Dana Farber Post

I was invited to write another post for the Dana Farber blog. Here is the link:

Being Grateful in the Face of Cancer

I wish I was feeling more grateful today! This infection has flattened me. I have not been to work this week and have spent most of my time either in the bath, trying to encourage this thing to open up and drain, or on the couch. Very low energy and low appetite. Today I went out to one of our favorite Japanese restaurants for a big bowl of tofu noodle soup. That was great -- to eat something hot and filling. And to get out of the house!

Tomorrow I'll see my PCP. It seems that this is all moving in a positive direction, but it's slow progress. I somehow missed the information that the cancer drugs I take have a negative impact on my immune system. I really had no idea. This has been so shocking and so scary. I am re-thinking some of my assumptions about the strength of my body and may need to make some adjustments.

This has been extremely humbling. 

THIS has brought me to my knees?

Amy riding Sully

I wasn't going to write about this, but decided to as it IS related to cancer.

Since Saturday I have made 2 trips to an emergency room and one trip to my primary care doctor. Why? A boil. It sounds so innocuous and silly. But I can now see why it was listed among the Biblical plagues.

Thursday I was out with Trish and commented that I had this weird pain on my left buttock. We joked about it, of course. Friday I took a closer look and noticed that it was red and swollen. Then went bike riding anyway with Gayle. (Sometimes my common sense does not kick in.) I got home from the ride and just got in bed. I felt totally drained. We didn't do anything extreme, our usual 30+ in the hills. Mark came out in the evening, and I could not get up. I just stayed in bed, forcing down some calories. I slept through until Saturday morning. We both looked at the site, and got worried. So we went to the ER. They put me on antibiotics and said to follow-up with PCP in a few days.

I went to the PCP yesterday and she was really concerned. She said it was much too infected to deal with in the clinic, and told me to go to the ER again. She told me I would need to see a surgeon and would be hospitalized. Crazy, right? The ER decided to give me an IV so I took a very high dose of antibiotics. They sent me home with more medication.

This morning my primary care called me (have I ever mentioned how awesome she is?). Christina Iaccobo. She was disappointed that they didn't admit me and wants to see me on Thursday. So that's the plan for now. She said to sit in a warm tub multiple times a day, hoping this will open up.

Yesterday I learned that the cancer drugs I take leave me with a compromised immune system. Really? I have been feeling so strong and healthy for some years now. That really got my attention.

I actually called in sick to work today and tomorrow. The site manager is a B---- and was very rude about it. Oh well. I never opt to call in sick. But I'm in a lot of pain and wrung out. I look terrible with dark circles under my eyes and no appetite.

This is all so very strange and unexpected.
Beating cancer all these years, and brought to my knees by a boil.
How's that?

"The Path To Restoration"

Brewster, Massachusetts

This quote is from tricycle.com's daily email:

"The Path to Restoration"

My advice for people is to love the world they are in, in whatever way makes sense to them. It may be a devotional practice, it may be song or poetry, it may be by gardening, it may be as an activist, scientist, or community leader. The path to restoration extends from our heart to the heart of sentient beings, and that path will be different for every person.

- Paul Hawken, "The Movement With No Name" 

This rings true! And I am finding more and more opportunities to give to the world in ways that are so fresh and unexpected. I never thought I had any skills or talents as a fundraiser. Or curator. Or jurist. And yet here I am, taking on all of these new roles. Is this the heat and focus of menopause? Or somehow related to holding cancer at bay and pursuing what I love? Whatever it is, I am grateful for this rich and satisfying phase of my life.

I was invited to be on the fundraising committee at the meditation center, and tonight is our first meeting. I am very excited about this, too. The meeting is at 6pm, an easy bike ride from my clinic. Then Narayan's class is right after that. Now that's how to spend a Tuesday night!

Ring That Bell!

Sasha enjoying a sculpture

I took this photo a few weeks when I had a guest from California. We were in the South End, enjoying a gallery walk, with Sasha. She REALLY liked this sculpture~ fortunately we were tucked around a corner towards the back so no one saw this! Some art is so yummy that you just want to eat it!

Tonight was a milestone. I saw on the platform for the first time, and led a group meditation practice. I have been looking forward to this for weeks. I was sure to be there early -- very early. I am often late.... and absolutely must be on time for this. So I got there about 30 minutes early. Enough time to fumble around with the lock, find the timer and set up my spot. As I sat down, my heart was pounding and my hands were sweating. I steadied my breath and mind. Then had a really wonderful practice. Every once in a while I'd look at the clock, and was surprised that the time went fast. Narayan was in the building, as was Maddy. So I felt supported in that way. It was such a thrill to sit in her seat.

And ring the bell! There is a HUGE bell. I actually kind of dropped the mallet in and it made a really loud sound. It was actually embarrassing! But that's OK... I will get the feel of it. The tradition is to ring the bell three times to signal the end of the practice period.

I will be practice leader every other Monday night. I am very happy about this.

And I just got invited to be on the board of an art group! The current president is rotating off and she wants put in place a 5-member board. She asked me privately to take on me the role of exhibition coordinator. I will think about it a bit, but I think I'll accept this role, too.

Reading Glasses!

Oldest Cemetery on Cape Cod

My sister has been staying with us on Mondays. This morning I was saying that it's hard to read my Russian dictionary, so she whipped out a pair of drug store reading glasses and offered them to me. And guess what? I can see perfectly! So middle age is definitely catching up with me. I am staying ahead of cancer, but must admit "defeat" in the realm of reading glasses. Today my errand at lunch will be a trip to Marshall's. Amy says that they have packs of 10 for about $10. Alas...

A few days ago I have re-committed to studying Russian. I hope to do another project at Yasnaya Polyana in summer 2013. And even if that doesn't work out, I love language and always have. So I figure my time is better spent doing 10 minutes of Russian every morning while I drink coffee rather than screen time.

A quick note about this photo: I was on Cape Cod in early September when I first had the new camera. I was in a cemetery and met another woman with a brown English labrador. She told me about another cemetery close-by which she said was the oldest on the Cape, and haunted with friendly ghosts. Of course I said, point me in the right direction! I went in with Sasha and loved being there. Later I picked the Angels up from the school bus and brought them there. We encountered a group of 3 men and 1 woman. They were filming both video and stills. She was the model, and they said it was fine for me to photograph her, too. I have lots of images of her but this is my favorite. The Angels thought this was all most intriguing. How I miss them!

Another View

Enough of the graveyard images... at least for now. Here is a photo of Sasha on the bay in Brewster at low tide. I took this in early September. Mark said he was kind of weirded-out by the graveyard photos. I reminded him that I love graveyards, and always have. I think they are beautiful, tranquil. And a great reminder to wake-up and live well. Gayle and I biked all season and I always pointed out the beautiful graveyards. She had never really noticed them too much, but now she scopes them out for me. I actually have a project in mind, which is to photograph all the old cemeteries in this county out West. But first I'd have to learn how to really use the camera -- all I do at this point is "auto". So much to learn!

Yesterday was rather serious, but there were funny moments. I did the bone scan as usual, lying down. The tech, Justin, came back in and said they want another look. Shit, right? That's what happened last time. I began to get freak out. I padded down the hall to pee, again, to empty that pesky bladder, the site in question 3 months ago. But when I came in the room, the set-up was totally different. He told me to sit on the machine, much like sitting on a toilet. Elbows on knees, head in hands. I said, "gee, it looks like I'm taking a dump." He laughed and said I had a good sense of humor. But it was the perfect angle as the radiologist could see that all was fine. I call the radiologists the wizards of Oz; you never see them, yet they control the strings, in a way. I also call them the readers. When Justin came in the last time, after the final images were taken, I asked if he could read the readers. He winked and said he thought I was good to go. I gave him a big bear hug as I walked out. I am so grateful to the whole staff of the Dana.

I drove out West last night. It was stormy, that spooky kind of night. Beautiful. I feel quite drained this morning. It may take a few days to recover. I am holing up here on the hill. I love to wake up early as the morning light is so beautiful. Made strong coffee, lit a fire and read Russian grammar. Haven't done much with Russian in some weeks but perhaps I'll get back to regular studies again. Went out the garden to collect greens and mint, and made a juice in the extractor. Cooking. Will spend time in the studio; I want to make a pair of 12x12 inch encaustics for a specific place in the house.

What a blessing to have this time and place to retreat. To recharge and refocus. Mark says that every time I get scanned, I get re-energized about living mindfully. And using my time well. That's the silver lining.

All Clear!

The photo is just a beautiful graveyard in Brewster... nothing to do with today's results. I took it in early September.

Todays scans: All clear! Whatever showed up in July was an "artifact", i.e. nothing. I am SO relieved. I've had the strong sense that I'm fine, but was hoping that the scans would concur. And everything is clear. Blood work is totally normal. The radiologists did note an "uptake" on the right sacrum, but it's been there for at least 2 years. And  I'm learning that radiology is much more of an art than a science. It's really hard to make a definitive call on shades of gray. So I'm not going to think one more second about that. I'll go back in 3 months as usual, but just for blood work and a consult with The Vixen. I won't get scanned again for 6 months.

Lucy was with me all day, and Mark joined us around noon. So I felt lots of love and support from those present, and from so many who are sending me blessings from afar. I saw Narayan last night, and she said that she would send in big metta.

I am headed out West. We have had a lot of visitors the last few weeks and I am people-weary. So I'm looking forward to hunkering down at the house on the hill and being quiet. I want to walk in the woods, read by the fire, work in the studio. There is a huge emotional build-up to the scans... so now it's time to rest and recover.

"3"

Brewster, Massachusetts

I saw an old friend for lunch yesterday. She asked me, on a scale of "0" to "10", how anxious I am about tomorrow. With "0" being low, I said that I'm about a "3". Not very anxious but a little bit. I wrote this a few days ago, but I think that it does get easier as the years roll on. I remember the first few scans, Lucy and I would be in the exam room, waiting for The Vixen to walk in. One of would have diarrhea and the other looking for the sink in case we threw up. It was intense. They do my vitals right before the consultation, and my blood pressure which is usually totally normal if not a little low, shoots up into the upper ranges. The body does not lie! The last few days I can describe as "suspended animation". It is a waste to wish away precious time, but I'm really ready to this behind me. But soon enough! Lucy will spend the entire day with me; Mark will walk over for the consultation and my sister is in town teaching tomorrow, and she will spend some time with us, too.

And I sent out an email a few weeks ago about the blog I wrote for the Dana Farber, so everyone I know is rooting for me, too. That is so helpful. I get this visual image of a huge wind behind me, filling my sail with love and abundance. Sail on!

"Creating New Joy"

I love receiving a daily email from Tricycle.com

Here is today's, from one of my favorite Buddhist teachers.

Creating New Joy

 Waking up in the morning, you can recognize "I’m alive" and that there are twenty-four hours for me to live, to learn how to look at living beings with the eyes of compassion. If you are aware that you are alive, that you have twenty-four hours to create new joy, this would be enough to make yourself happy and the people around you happy. 

- Thich Nhat Hanh, "Interbeing with Thich Nhat Hanh" 

Today I look forward to a large cup of Starbucks coffee. I am not working today, so I will be able to enjoy it at the local care at a tall table, overlooking the street. So I can watch Sasha and how much love exudes as she greets each and every passer-by. Later I'll take her to the dog park and can witness pure bliss as she runs and explores and sniffs around. Just after lunch my brother-in-law John will drop off the Angels for an overnight visit. I am so excited to see them! Their parents are presenting at a conference so the kids are playing "hooky" from school. 

It's easy to look at them with eyes of compassion.

I am thinking a lot about the upcoming scans. I rarely do this, but felt compelled to look at metastatic breast cancer life expectancy. This is from a story in the New York Times which ran on 1/17/11:

"the median life expectancy for patients with metastatic breast cancer is just 26 months, and fewer than 1 in 4 survive for more than five years"

And one metastatic breast care patient who was interviewed had this to say:

“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”

That's true, too. I am no hero and am just plain lucky that my disease is stable.

The question is, how to hold both of these realities and remain balanced? The joy and the sorrow.

Anne Hillman

Narayan started teaching the "old yogis" fall series last night. I have missed her so! The spring term ended in late April. So it's been a really long time. [She does teach some in the summer, but not much, and I don't like to spend summer weekends inside -- sitting. Or going on a retreat.] Sometimes I double up and take 2 classes on Tuesdays - the beginners drop-in at 6, then the "old yogis" at 7:15. Which was the case last night. It's easier to stay in that part of town than bike back and forth. So I had 3 hours with her last night. It makes for a very long day, but what a delight. She was radiant last night.

She often reads some poetry and it's sometimes a challenge to locate the poem. We are not allowed to take notes during class, so I try my best to remember a few lines and rush home and google those lines. Here is what she read last night:

We look with uncertainty
Beyond the old choices for
Clear-cut answers
To softer, more permeable aliveness
Which is every moment
At the brink of death;
Something new is being born in us
If we but let it.
We stand in a new doorway,
Awaiting that which comes…
Daring to be human creatures.
Vulnerable to the beauty of existence.
Learning to love.

--- Anne Hillman

One week from today -- scans. I continue to feel great so if that is a good predictor, I am fine. My body feels strong. I continue to bike with Gayle on the "hills" out West. We don't do huge mileage, but usually about 40 or 50 miles. We went out on Saturday and did a 40 miles ride. But the first 15 miles were straight up. No joke. 

Even though I am nervous about the scans, I think it's gotten easier over the last 4 years. Maybe that's not true. It's hard to evaluate that. It doesn't keep me up at night, I don't "go there" with catastrophic thoughts. But it's always a question a few weeks before the scans. How will it go? What if? 

But overall I am well. And very, very grateful.