Emilio, age 4 months

Mark's company has partnered with the Massachusetts Department of Children and Families for the third year. His company agreed to provide 150 kids in state custody with holiday gifts. Mark signed up for 4 kids. He brought his list home -- it gave the kid's first name and last name initial; age; a very short list of what they would like for the holiday; and the name and office of their DCF social worker.

I asked Mark if I could sponsor one of his "kids" and he gave me Emilio.

[As an aside, we were within a phone call of being put in foster care. Our parents were both dead and our step-mother had gone crazy on booze and pills. Had our aunts not intervened, that would have been our life, too. I was 17. So I have a special spot in my heart for kids in state custody.]

We shopped local in an old-school department store. It was one of the most gratifying shopping experiences of my life! Mark was super generous with his 3 kids, too.

Now this is enjoying the holidays!

A Month of Gifts

My mother died on December 1, 1981. I miss her more with each passing year. Or more accurately, I miss what could have been. The holidays have always been a hard time for me -- and plenty of others, too.

4 years ago I stumbled upon an article in Yoga Journal written by a woman struggling with a bad medical diagnosis. Her spiritual teacher suggested that rather than giving in to despair and self-pity, that instead she should do something kind for someone else every day. The writer took this on, and eventually wrote a book about it. I have long since forgotten the title and author. Although it's probably in this blog in late 2009.

Anyway, since December 2009, I have done my own version of this. For each and every day of the month, I give someone a gift. As the year draws to a close, I find myself looking forward to this rather than dreading the approach of Christmas. Today's gift went to Narayan. Last night I baked a coconut bundt cake. And she was also collecting money for her upcoming trip to Burma. So I gave a hefty amount for that as well.

Yesterday I got an email from the meditation center, inviting me to meet with Narayan tonight. This is highly unusual. Typically you wait for months for a private interview and they are planned long in advance. And typically it's 20 minutes. We met after class, and she wanted to follow up with me about all we talked about last time. About a month ago was our last meeting. There was no time constraint, so we just caught up. It was lovely.

I sometimes joke with Mark and Narayan herself that being with her is like being with Jesus. But it really is an extraordinary thing to be with her in a group or one-on-one. She has an uncanny ability to read situations really quickly and responds in such a compassionate but real way. I am so grateful to have met her in this lifetime.

She continues to inspire me. 

Daddy-O

Mark's dad died on Friday November 22. He spent the last 9 days of his life with both sons by his side, seeing him out of this life. We buried him on Tuesday. Mark and Tony created a beautiful and moving ceremony that culminated in an Army send-off with a female officer playing taps on the bugle, followed by the flag folding. It was very moving and so fitting. Daddy-O didn't talk much, but he was always happy to talk about his memories as a World War II service man.

Mark's birthday is November 18 so we were relieved that Daddy-O made it a few days past that.

Even though his dad was 89 and his death was inevitable, it has still been really hard.

Mark is back to work today.
Please wish him well!

Saint Francis Hospital Hospice

Mark and I are parked on the 6th floor of Saint Francis Hospital in Trenton, New Jersey. His dad (90 in January) was admitted to hospice this week. I have never been to a hospice before. His mom died in a hospital in 2004. But it feels very familiar. He has DNR status, so the only support he is receiving is morphine (injected through an IV), and some oxygen through the nose. This is the 3rd day without any food or liquid. He is tough! He has had dementia for at least a year and it had started to affect his ability to swallow. Which leads to the lungs filling with fluid. We can hear the death rattle as we sit here. The impulse is to run and find someone to intubate him, to feed him. But Mark and his brother decided together that this is the right thing to do. It's what Daddy-o wanted, too. But it's really hard to witness this.

I drove down last night.

We don't know how long he will last, but given that he has had no fluids for several days now, we expect the end of any moment now. Last night the priest and nun came in to give last rites. He was raised Catholic although he converted to Evangelical when Mark was a teen. We talk to him, rub his shoulders and head. And pray for a comfortable easing out of this life.

All Clear!

Everything is perfect -- scans, bloodwork, physical exam.
Just as I thought, The Vixen wants to stay the course.
We will stretch the scans out to 9 month intervals rather than 6 months. And I'll stay on the Lupron and Tamoxifen. In a few years she might switch to another medication rather than Tamoxifen but no changes now. I'm fine with that.

She did say that she will present my case to the Tumor Board at their next meeting. She has another patient like me who is 18 years out! Talk about an outlier! She is not sure about the timing of making any changes in my management, but I have learned to live with ambiguity and uncertainty.

I celebrated by going back to work. Ha ha.

Insistence and Urgency

At 9am, Lucy and I will meet with The Vixen for scan results. I am totally confident that everything is fine. If there was a problem, she would have gotten the results the same day (last Friday) and would have called me. So I'm assuming that all is well. Now that I have passed the 5 year mark, we will at some point be talking about going off treatment altogether. I am 52 now and was in peri-menopause when all this started in August 2008. The Vixen tends to be rather conservative and takes the view, "if it's not broken, don't fix it". I am doing really well so why mess with success. On the other hand, any and all medication has side-effects, especially if taken for a long time. I would certainly be happy to say goodbye to Tamoxifen!

Lucy has been with me to almost every appointment including tests, surgeries and consults -- for the last 5 years. What an amazing friend!

Mark will not go with us as he is heading to New Jersey. His 90 year old father who was in a nursing home had a fall that landed him in the hospital. He was cleared and returned to the nursing home, but they sent him right back to the hospital due to mental status change. He had a brain MRI which showed significant deterioration. He has been on DNR status for some time now. The last few days he has refused to eat or drink, and no one is going to force him to do so. So his days may be numbered. I just hope that Mark gets there in time.

Last night I went to Narayan's class. We are working with renunciation this term and specifically she is asking us the last few weeks to look at clinging. The homework has been to notice when we approach situations with insistence or urgency. Urgency is my middle name! Sometimes Mark and I joke that my favorite word is "now". And not in the meditative sense. In the sense that I want what I want when I want it. A terrible quality! and I am always rushing. On Friday I took a 7:30am yoga class but was a few minutes late. What could have held me up? Nothing -- it's just a habit. So I am starting to look at that.

The other thing she talked about was the importance of daily practice. She suggested that we sit every day -- regardless. And the best approach is to do it first thing in the morning -- not after doing email and drinking coffee -- which is exactly what I do. She said the only thing to do before sitting is to pee -- and only if necessary. So I did it that way this morning and will try it for a while. I often have this sense during the day of the to-do list. Sit, yoga, practice piano, exercise... etc etc etc.

She closed with prayers for the people of the Philippines. 

Scans!

Today I had scans at the Dana Farber, but won't meet with The Vixen for results until Wednesday. Usually it happens in the same day, but for some reason she is not seeing patients in the afternoons. Since it takes 3+ hours to get everything done, there is not enough time to see her during her morning session. She has had several promotions since we started in 2008 so maybe her patient time is cut back? I will ask her about that when we meet. But I feel totally fine so am not at all worried about the findings. In fact I saw my PCP a few weeks ago and she commented several times about my glowing health. (I also brought her some organic apples from Lucy's trees so maybe that had an influence on her kind words. Ha ha.)  She mailed me the results and my "bad" cholesterol has dropped since last time. And she says that my BMI is optimal. So it's all good!

At the encaustics conference in Santa Fe, one of the hands-on workshops was jewelry making! I made an awesome necklace using 2 panes of 1" glass with copper foil tape and solder. I am very enthusiastic about this and am order materials today. I am rather clumsy with fine motor tasks so this will be a challenge but it was so fun and unusual that I'm hooked. So you may see these pendants in the December gift-a-day program!

I am very happy at work these days. I switched to the psych integration team on November 1, so now do all mental health work. No more case management -- or managing anyone else! My schedule is still 3 days/week which gives time for my fledgling private practice and all the other things I love to do.

Mark started taking piano lessons recently so I have picked up practicing again -- after a 40 year hiatus. I'm not taking lessons -- yes -- but am catching up where I left off as an early teen. I had this mistaken idea that playing music was dead. It has been super pleasurable and I always find time for it, even on an already over-committed day. Mark is making great progress and is interested in the music theory as well. So he is teaching me!

Barre Center for Buddhist Studies

I spent the weekend with Chris Germer and Chris Ives at Barre Center for Buddhist Studies. There were 40 participants from all over the country. My roommate, Barbara, flew in from southern California. Chris G. was my clinical supervisor for a year -- we stopped meeting in June. I hope to have another year with him again, starting in July. He really brought my practice to a new level.

The program was called "Training Compassion: From the Buddha to Modern Psychotherapy". Mostly mental health professionals, as they offered CEUs. What a powerful program! It was the best training I've ever attended -- in 25 years! We all stayed on campus. Barbara and I had a room on the second floor of the farmhouse with windows on two sides. We bonded right away (not a silent retreat) and she was delighted that I had the forethought to bring instant Starbucks. The first morning I brought her coffee in bed -- we had a lot of fun, talking and enjoying our time there. She has written a few books on mindful communication and will send me copies. I told her I'd send her an encaustic painting.

She also told me about some teachers, retreat centers and an organization called Sakyadhita. "Sakyadhita" means "Daughters of the Buddha."I just signed up for their email. There is a conference every 18 months in a Buddhist country. 

I work today, then will fly to Santa Fe for an encaustics conference. 

Life's Work: Tom Phillips and Johnny Carrera

I am out West this week, enjoying some quiet time in the woods. Just me and Sasha who is now 3 years old. Mark is working. Usually it is too lonely here by myself, but this time I am really loving it. My work is challenging and I am bombarded by trauma and suffering. So it is replenishing and grounding to be here, in peace. I usually go off the hill once a day to see someone, but mostly I'm here by myself. I walk in the woods with Sasha (and have pulled ticks off both of us!), practice yoga, play the piano, work in the studio, garden, cook. Make healthy juices with the extractor. The garden is still producing beets, carrots, parsley. And the apple trees have been super productive this year.

Today I will range far afield and visit MassMOCA. It is an amazing museum. I am going to see this particular show:

Life's Work: Tom Phillips and Johnny Carrera
This two-person exhibition starts with that idea of a life's work, a project that an artist continually goes back to and that becomes both a trace of that work and a career. Both projects in this exhibition span decades and generations, and also function as re-inventions of existing texts. For the last 40 years British artist Tom Phillips has been working on A Humument, a series of collages based on A Human Document, the Victorian novel by W.H. Mallock. Phillips has altered the individual pages of the original book four times, each edition creating a new concrete text poem. For Life’s Work MASS MoCA will show Mallock’s unaltered book along with Phillips’ first edition of A Humument completed in 1973 as well as his most recent 5th edition completed in 2012. This amounts to a total of over 1,000 individual book pages. 

Maryland-based artist Johnny Carrera has taken on his own life’s work for the past twelve years. Carrera’s project, like Phillips’ starts with an existing book: in this case, the original engravings of the Webster’s Dictionary. Carrera’s, The Pictorial Webster's Dictionary, transforms his source to create a new lexicon of words, texts, and meaning. Together these projects not only offer insights into the working process of two artists but also allow viewers to rethink books, images, and the nature of time. For Life’s WorkCarrera will exhibition book pages alongside reinterpretations of the etching projected at a large-scale, inviting viewers to feel as if they can walk straight into the world of The Pictorial Webster’s Dictionary. 

Thanks for reading!

I have received a lot of email lately, letting me know that readers of this blog are still interested! Which is motivating to give an update on all fronts.

Health: I am still recovering from the detached retina after surgery on June 6. The vision in my left eye is really poor and is not correctible even with glasses. I now have an astigmatism. This bothers me constantly. Although I've been near-sighted since I was a kid, I didn't need to wear glasses unless driving or at the cinema or something like that. I will see the surgeon in mid-December. Now I understand that it can take months to get back to baseline. Although returning to baseline is unlikely. So this is something to learn to live with. The funny thing is I bought really cheap glasses at Pearl Vision, and I get so many compliments on them! I went right to the bargain rack, hoping that I will recover soon and not need such a strong script.

And as far as the cancer... I get scanned in a few weeks. If all is well, I'll get scanned annually rather than every 6 months. And at the beginning, it was every 3 months. I feel excellent so am pretty confident that it will be OK. The Vixen also told me that if I continue to do well, she will take me off treatment altogether. Already she has discontinued the Zometa which I used to take monthly. Then we went to every 3 months, then to every 6 months. It is crazy expensive -- like $7,000 per treatment. Next to drop off will be Lupron which is an injection every 3 months. And the Tamoxifen. Most cancer patients go off it after 5 years. I'm 5 years+ now... so it will be an interesting discussion.


Work: I continue at the hospital clinic 3 days/week. I will do an internal transfer to Consult Liaison Psychiatry as of November 1. I am very happy about this change -- I will provide psychotherapy to the primary care site with no case management. In my current position, I do a bit of case management along with the therapy. So this new role will suit me much better. My current position is slated to shift into complex case management which is NOT what I want to do. And I also continue in the private psychotherapy practice one evening a week. That has been very satisfying.

Art: a few months ago I was invited to join the Board of International Encaustic Artists as Exhibitions Director. I am also on the Board of Masswax, the local chapter. I thought I would like the Board position more than I do. What I've found is that it's a lot of politics... and decisions that I'm not interested in or even qualified to make. What I like to do is curate -- not the other stuff. I have not been in my studio much since May. During June and July I was not "allowed" to due to eye surgery, then I was bike-crazy the rest of the summer. I'm on vacation this week and plan to spend time in the studio every day. I'll be attending an encaustics conference in Santa Fe later this month.

Biking: I did the Pan Mass Challenge on August 3 and rode 111 miles. That was after 2 months of sitting on the couch all of June and July. What a thrill that was! And I just did another century ride last Saturday -- 105 miles altogether. I love these long rides. Gayle and I continue to bike together on Saturdays through the hills of Western Massachusetts. We went out yesterday for a really tough hill ride. She and I are perfectly matched -- we like the same level of challenge and also like to stop to shop at yard sales and most importantly, to eat! Yesterday she eyed some really cool handmade bowls at a yard sale that had Brail on the inside. She knows the potter and said that this artist is becoming renowned in her field. As an artist, it's sad to think about this beautiful work on the side of the road at a yard sale. I got 6 of her bowls for $5. What a deal!

More on Mark... and family... and meditation/yoga next time...
Want to get up to the studio now!

I Said To The Wanting-Creature Inside Me

Narayan often reads poetry to our meditation class, and since we are not allowed to take notes during dharma talks, it's a challenge to remember a few lines. But tonight I was so struck by the poem that I asked to write it down after class. Of course she was totally fine with that. Here it is:

I Said To The Wanting-Creature Inside Me


I said to the wanting-creature inside me:
What is this river you want to cross?
There are no travelers on the river-road, and no road.
Do you see anyone moving about on that bank, or nesting?

There is no river at all, and no boat, and no boatman.
There is no tow rope either, and no one to pull it.
There is no ground, no sky, no time, no bank, no ford!

And there is no body, and no mind!
Do you believe there is some place that will make the
soul less thirsty?
In that great absence you will find nothing.

Be strong then, and enter into your own body;
there you have a solid place for your feet.
Think about it carefully!
Don't go off somewhere else!

Kabir says this: just throw away all thoughts of
imaginary things,
and stand firm in that which you are.

Kabir

This fall we are working with the idea of renunciation. Letting go. The homework each work so far has been to "relax". That means something different to each of us. For some, it's a physical softening, noticing  how much tension we carry around. For others, it's a letting go of expectations. 

Tonight we were put in groups of 5, and asked to discuss this. I talked about the situation with my sister. Much to my delight and surprise, I have been able to let go of quite a lot of my suffering around this. Class last week really helped me see that it really is possible to let go of how we think things ought to be. I told the story of biking by myself a week ago, and having one of the worst bike rides ever. I was climbing hills, but what was making me totally miserable was obsessively thinking about my sister for mile after mile. It was a glorious day, and I kind of wasted it by my mental preoccupation with that situation.

Interestingly enough, as I've been able to let go more and more over the last week, her husband called yesterday to say that he will bring the Angels to Boston for dental appointments, and will have dinner with us tomorrow night. I am so excited to see them. I haven't seen them since probably May. 

This is where things stand -- and I need to be open to a shift as everything changes, eventually. And not suffer too much in the meantime, wishing that things were different.

Clover Century Ride

My long-distance bike riding passion continues to grow! Yesterday I did the Clover Century Ride out of Sunderland, Massachusetts. It is a brilliant model -- it consists of 4 loops, each 25 (+) miles. They are also ranked for difficulty. I went with Molly and Bernd. Gayle was going to go but it didn't work out. So we were three riders, and Molly's boyfriend joined us for the last loop. It is peak foliage right now so it was a gorgeous ride. The weather was fine -- really humid but the rain held off until I got in the Jeep to drive home. Cloudy, high of 67 with a bit of sun peeking through every so often.

For the first time on a ride, I began to get leg cramps. Not enough to knock me off the bike, but still quite painful. When I got home, I walked barefoot around the yard in the hope of easing up the stiffness. After a long ride I'm too uncomfortable to do yoga other than a few basic poses. When first lay down to sleep,  I got some excruciating cramping in both hamstrings; woke up screaming which was upsetting for Mark an the dog! Eventually it abated and I was able to sleep. I try to eat before a ride to load up on potassium and I hydrate well, but my body tends towards leg cramps.

Even so, it was a great event.
I don't have any more bike events planned, so that may be it for 2013.
The Clover organizer said that this was the 5th year and that she is losing enthusiasm for the event. So I offered to help her next year. May the Clover continue!

Letting Go

If you are not familiar with Tricycle.com, go to their web site and sign up for the "daily dharma" email teaching. I read it every morning. Sometimes it does not seem particularly relevant, but often it feels like being in church as a kid. The experience that the sermon was given just for you. The message that you need to hear at that moment in your life.

Here is today's:

"Letting go of fixation is effectively a process of learning to be free, because every time we let go of something, we become free of it. Whatever we fixate upon limits us because fixation makes us dependent upon something other than ourselves. Each time we let go of something, we experience another level of freedom. "

Traleg Kyabgon Rinpoche, “Letting Go of Spiritual Experience” 

This fall Narayan is working on "renunciation". It is part of the Eight-fold Path. Letting Go. Letting Be. Finding freedom. On Tuesday she asked the class to give other words and we came up with about 20 different words to describe this.

On Tuesday she asked us to work in dyads, and to discuss with a new person, "why am I here". We could address it on any level - why we are on the planet, in this incarnation, in the meditation hall. Whatever. I started off saying that the reason I go to the Center is the peace that I experience. I biked by to meet Lucy for dinner before class, and even being near the building I get that feeling. And being anywhere around Narayan there is some kind of "transmission" of goodness. As I sank onto my cushion and she began to speak, I felt this spiritual balm. It's almost impossible to describe. 

Her first instruction was, "relax. Relax your body". I melted. Then she moved on to talk about letting go of our mental suffering. Even the suggestion is powerful. Really, let go of your mental suffering? That's possible? I simply followed my breath rather than the usual metta practice. Peace! 

Something very painful is happening now. My sister and I had a falling out in July and she refuses to communicate with me at all. Which means that I am not in touch with the Angels, either. I sometimes email Shayna but am very careful what I say. I won't get into what happened between us. All I'll say is that her silence is absolutely devastating to me psychologically. I have abandonment issues from family of origin, so this is about the worst thing for me to manage. She has been such a steady presence. It's impossible to imagine life without her. But that's how it is, at least for now. So I have to find a way to live happily and in peace, even with this.

For the first few months I worked with metta, but now that Narayan is teaching again, I will shift my practice to "just sitting" and will "lean into" what arises. Which is a lot of pain and anguish and re-playing the whole story over and over. 

This is my practice now -- to find peace. I will attempt to work with this situation in my spiritual practice. If I can let go of this, spiritual awaking is possible. Even for me!

Whoever Brought Me Here

Narayan has started teaching again. The first class of the fall was last week. I was unable to go as Mark was discharged from the hospital just the day before. [emergency gallbladder surgery, long story...] My friend Cheryl shared the homework from last week which was simply to relax. I actually practiced relaxing during sitting meditation during the week, and it was quite amazing how such a simple instruction was so powerful. Imagine that, just relax!

But I was able to go tonight. Narayan was her radiant self, dressed entirely in white as usual. She often reads poetry, and tonight she read a few lines from Rumi's "Whoever Brought Me Here".

Where did I come from, and what am I supposed to be doing?
I have no idea.

Pan Mass Challenge update

I did it!
I completed the Pan Mass Challenge, met my fundraising goal of $5141 (last year's amount) and had a great ride. It's still not too late to contribute -- we have until October 1. So if you want to give... or give again... here's the link:

My Fundraising Page

I got medically cleared just 2 weeks before the ride which was August 3. The first thing I did after he gave me permission to get off the couch? The next day I went to a yoga class with my favorite teacher Sarah Jane, then drove (first time in 7 weeks!) out West, and took an evening bike ride. It was extremely hot and humid, but I did 29 miles that first time out. I got in a few more rides and by the time the PMC was one week away, I did one last training ride of 65 miles. So I figured that since the surgeon said it was OK to do and had some decent mileage behind me, I gave it a shot. Mark told that me that at any time he would pick me up so I felt no need to finish. At every rest stop I re-evaluated. Any pain? discomfort? difficulty? None of that. It was exhilarating. Plus the day was cloudy and relatively cool.

It was so much fun! I met another rider, Jackie, who went my speed or a bit faster. We talked the whole way, all 111 miles. It took almost 10 hours, but it's not about speed for anyone. It's not a race.

So in spite of a huge setback in training, it was awesome. Can't wait to do it again next year!

The vision in my left eye is still really myopic. I'll get fit for new glasses on Friday. Now I understand that it can take months to fully recover. The vision returns to baseline very slowly. I've been spoiled -- I have been near-sighted since I childhood and have used glasses, but only for driving or going to the theatre. Until my vision returns to baseline, I'll be much more dependent on glasses. But I'm OK with that. Most everyone this age (52) has glasses, so I'll gracefully and gratefully accept this change.

Good to the Last Drop

I just took my final dose of medication - opthalmic prednisone. What a relief to throw that little bottle in the garbage! I didn't even check to see if it is recyclable. Good riddance!

Now it's just a matter of waiting it out -- hoping to regain as much eyesight as possible. The surgeon says that it can take months to re-gain what has been lost. And there are no assurances how much will come back. But the pinhole test indicates that I should recover a lot more. I'll get measured for new glasses in a few weeks. And hopefully/likely, will need less strong lens in the coming months. In the meantime I'm getting by with my old glasses.

I will return to work August 1.

What can I say about these last 2 months? This was much harder than cancer. The isolation was killing me. I felt very lonely, isolated. I was hoping that it would take me inward, relishing in the time to practice meditation. But that's not how it was. Basically I could not wait to get back to my external, active life. So clearly I'm not very far along on the spiritual path. Give me a bike! and a party!

One new thing that I re-discovered over these 2 months was the guitar. We swapped Mark's classic Guild for a Walden which has a pick-up and electronic tuner. On Thursday I took a lesson with a well-known musician named Michael Nix. I was holding the guitar completely wrong - for starters. I hope to be able to find time to take regular lessons with him one I get back to full-throttle living. I love feeling the instrument resonate through my fingers and entire body. And having an amp makes it really fun.

Last night I ventured into the studio for the first time. It was so great to be in there again. I am curating a show in Cambridge that will be installed August 18. And hope to prepare a few more pieces before then.

And the Pan Mass Challenge - I am going for it! It is a week from Saturday. I have done 3 longish rides since Wednesday - 29 miles, then 45 miles, then another 40 on Saturday. It was beastly hot and I felt fine. I'm going by the conventional wisdom that if you can bike 60 miles comfortably, you can do a century ride. I'll attempt 60 this weekend. That will give me the confidence to do the full ride. But of course Mark says he'll pick me up anywhere along the way if I crap out. So I'll get in a few more "short" training rides (12-20 miles) and then rest completely next week. and eat! and eat! and eat!

First Things First

The first thing = morning yin yoga class.
I have missed so many things over the last 7 weeks!
This morning I went my usual early morning yin yoga class.
Yin style does long, slow poses. Typically you are supported on blocks, blankets or bolsters and hold the pose for 3 minutes.
It was delightful! That first downward-facing dog was particularly freeing.

I haven't driven, either, in 7 weeks.
It's time to go see the Angels!
So I'll venture down to Cape Cod for a few nights.

I am so grateful to get my life back!

Medically Clear!

I just got back from seeing the eye surgeon. I was in a panic while with the techs. They did a new series of tests to determine whether there is a problem with the macula (sp?). The tech had a very hard time getting an image of the left eye. So I was freaking out. and the tech who tested my vision said that I had made no improvement, although the pin hole test showed slight improvement. By the time I got to see the surgeon, I was a nervous wreck.

Bottom line: I'm going to be fine! Will continue one of the medications for another week, then no more anything. Will return to see him and another opthomologist in 3 weeks. Will be fit for glasses. My vision will continue to come back - slowly - but this is the normal course of recovery. Glasses will definitely correct whatever additional near-sightedness I have, and he said that I can do laser surgery in the future which would correct myopia in both eyes.

AND the best news is that I can exercise again! Basically I can do what I like, as tolerated. If I didn't have meditation class tonight, I'd pull out my bike and go out immediately. How I have missed that!

I'll return to work August 1.

How about the Pan Mass Challenge? It's 2+ weeks away. Is there any way I can get prepared? That sounds like madness, to even consider it. But I'm entertaining the possibility...

Wow, what an experience this has been.
Much scarier than cancer which sounds improbable. But that's been my experience.

Alleluia!

Blur

This is slow going. I spoke with my cousin Jennifer recently, and she noted that our family's "default" setting is to be active, to work really hard, to get things done. Which serves us well in many life situations. However, in this situation, it is not a good quality. With this, it's about being totally passive and letting the healing happen. It is almost 5 weeks post-surgery, and the vision in my left eye is really blurry. The surgeon told me last week that by today the eye should be clear. And it's not. Which is worrisome. I will call later to ask if this is unusual and needs to be evaluated, or if it's on the continuum of healing. It's certainly better, but not as soon as I'd expected.

Mark is in California this week on business, so I'm alone. And unable to drive. So I'll be in the city all week.

I was just out with the dog, and dropped the back door key down the basement stairs. The light was not turned on, and the other light was burned out. So I could not find the key. Which caused a momentary panic. I tried to use my phone to light the area, but I still could not find the key. Fortunately the upstairs neighbor was home and came down with a flashlight as even the basement light didn't really help. He found the key which had dropped into the washing machine.

Such new appreciation for eyesight!

the danger is past

Good news!
I saw the surgeon today, and all is healing well. He said, "the danger is past".
The vision is coming back in my left eye, slowly but steadily.
He said I can stop taking the medication that kept my left eye dilated and hence blurry. So within a few days, I should be able to see clearly out of both eyes. I'll continue 2 medications... but this is looking up!
I can read as much as I want, up to 3-4 hours/day. Wow, what a luxury!
Still no exercise other than gentle walks, up to 20 minutes at a time.
I may be able to drive, depending on how my eyes feel.
He said that basically I follow the wisdom of my body and back off when my eyes hurt or headache.
I'll see him again in 3 weeks.

So I'm just so relieved.

Mark and I drove out to our house out West this evening and will stay through the weekend. It's our 10th wedding anniversary on Thursday.

He gave me a yearlong subscription to The New Yorker as an anniversary gift. Nice to know that I'll be able to read it now!

Week #3

It's 3+ weeks since the surgery. Initially the retina specialist said that I'd be out of work 4-6 weeks. I thought -- not me! I'll be ready to go back in no time. Boy was I wrong. And has this been humbling! I bounced back really quickly after the other surgeries -- the lumpectomy, the mastectomy, the parathyroid removal. I was on my yoga mat the very next day, pushing to recover strength and flexibility. This is a totally different animal. This is all about patience and doing the minimal amount. Not my strong suit!

Mark has been cooking every meal all this time. Tonight he said that it's take-out from here on out. That may be an exaggeration, but he's tired of this, too.

The best thing about this experience has been my red electric guitar. Mark bought it kind of as a joke, but we've both had a lot of fun with it. His goal is to be able to play "Crash Into Me" by Dave Matthews by the end of next week. He signed up for some online guitar class and is learning that song! I continue to pluck away, 2 strings at a time, in the classical style.

Tomorrow we will be in the city for a night. I have 3 private patients to see, then the surgeon on Tuesday afternoon. I hope that the eye has continued to heal and that he will ease some of the restrictions. I keep wondering if there's any chance of doing the Pan Mass Challenge. But probably not. I feel dizzy when I stand up as I am sitting or lying down so much. I am like an over-sized lap dog.

How will I ever return to my former activity level?

Eye Candy

Mark and I are out West this week and next.
He's on vacation and I'm -- on medical leave. Completely dependent on others to drive me around...
Given that my activities are extremely limited, I am grateful that we are getting all the windows and doors replaced in our house. Why? Because the crew is absolute eye candy. On Monday there were 5 guys here, yesterday there were 6, and today there are 4. One is more ripped than the other. And they are really nice guys, too, so it's been fun having them here.
I wish I was allowed to be in the kitchen! I wanted to bake for them. But alas, that's not on my "allowed to " list, either.
This afternoon Mark will drive me down the hill, and Lucy/Rick will pick me up and drive me to their country place. I'll stay overnight there, and spend the day.
Tomorrow I am taking a guitar lesson which is exciting.
I've been practicing daily and am making some progress. I love playing "classical" style, reading the sheet music and enjoying the sound of a few strings at a time. It's kind of like studying foreign language.
And today Trish is taking me to lunch at a place nearby.
I spend a lot of time doing meditation. And listening to Narayan's dharma talks from dharmaseed.org.
And listening to New Yorker podcasts, contemporary writers reading a short story from the New Yorker archives then discussing with the fiction editor.
So I'm trying to make the most of this challenging time.
Mark has been amazing. I'm eating lots of hamburgers and chicken, but am grateful to have someone cook for me every day.

"Nothing"

Some friends from Hartford, Jeanne and Lynn, came to visit us on Sunday. They are always so generous and come loaded with food and gifts. So this time I asked them to bring NOTHING. Shortly after their arrival, they brought in a HUGE cardboard box and asked me to open it. I'm thinking -- you promised! and now you brought me something!

So I opened it up... and began to pull out the wrapping paper... and at the bottom, found a sheet of paper on which was written "nothing". So they really gave me "nothing"! We got a big laugh out of that.

At a certain point in life you have so much "stuff" -- and the biggest gift is spending time with dear friends. Mark wowed them with crepes, savory and sweet, as well as greens and radishes from our garden.

I continue to lie around... and sit around... and am mostly patient with this forced inactivity. It's been almost 3 weeks post-surgery and it is so surprising how long this recovery is.... I'll see the surgeon a week from today.

Slow Recovery

This will be brief.
Today is the first time I've been able to open my own email for 2+ weeks!

All I can say is -- wow.
This has been a really difficult 2 weeks.
I saw the surgeon on Tuesday and he said that I'm healing well. I'll see him again in 2 weeks. He eased my restrictions somewhat -- now I'm allowed 30 minutes of reading per day. And can take short walks outside, like 20 minutes. My sister returned Sasha to us on Wednesday. We are so happy to have her back!

What, you may ask, am I doing with my time?
On Saturday Mark brought me the most amazing gift -- a cherry red electric guitar with an amp! So I've been re-learning guitar, listening to Narayan's meditation podcasts and watching endless hours of cable TV. Mark hooked up cable for the month. And guess what? It's absolutely dreadful. Although I do enjoy watching the Dog Whisperer and Bones.

I'll be out of work at least 4 more weeks.
I can see out of my right eye but my left eye is extremely blurry. I use drops multiple times a day to keep it dilated. He thinks that I will make a full recovery.

Absolutely everything is on hold. All the curatorial projects, studio work, training for the Pan Mass Challenge.

Narayan just called and it was so great to speak with her. I am learning the lesson of no-self. The way I define "me" is no longer. All those labels that I would use to describe who I am ... I am a psychotherapist... gone... I am an athlete... gone... I am independent... gone. Etc. It's been really humbling. I am forced to slow down, to go inside. To learn this poignant lesson that we all get sick, our bodies age. Nothing is permanent. Other than mindfulness. Being with life just as it is, moment to moment. No matter how boring, painful, whatever.

Mass Eye and Ear

Coffee's on... and I'm not having any. Today I'm feeling pissed off about this. We will take the "T" to the hospital, then a taxi home. And how I love coffee in the morning! and reading email. And reviewing portfolios for curatorial projects. And living my busy, fun-filled life. I keep thinking about all that I can't do, which is a long list. As a cancer survivor, my life these almost-5 years has been all about savoring every moment and living large. Doing what I like, as I like.

Post-surgery I am relegated to sitting in front of the TV. Literally. I despise TV. I hate watching movies at home as it seems depressing. So that will be the next 6 weeks. God this sucks.

We even sent Sasha to my sister's. Amy came and picked her up last night. I spoke with her this morning and Sasha and her dog Pebbles are having a blast together. The Angels were awakened by a cold wet nose which delighted them. I could hear them shrieking in the background, a big doggy love-fest. and here I am. Let the boredom begin!

No exercise of any kind. No reading, writing. No computer, text, art-work, cooking, gardening, studying Russian. I can eat whatever, but then I'm afraid of putting on 20 pounds. I'll become a pale, fat, flabby depressed mess.

So there it is.
I tend to "make lemonade". Hopefully I can re-frame this experience into some kind of spiritual opportunity, a chance to move inward, deepen my meditation practice. (Did I say no yoga, either?) But I'm not there yet. I won't be able to write in this blog, either, but I'll ask Lucy or Christiane to be a scribe on occasion.

til soon!

Pre-Op Visit Today

So, it looks like lots of you still read this!
Thank you SO MUCH for all the emails that have been pouring in.
Everyone has been so thoughtful and supportive.
Many have suggested books on tape, DVDS from the library. And today will be about all of that! Downloading as many Narayan dharma talks as I can find, taking out as many DVDs as the library will allow. And making a "plan" about how to manage this upcoming forced captivity. Anyone who knows me at all can appreciate that my life is all about activity and communication -- the things that I will not be able to do for a while.
And yes great strides have been made in eye surgery. The retina specialist Mark and I saw yesterday was fantastic. I trust him. And if you are a friend of mine, you know that I am a good judge of character.

Here's all I can say about what led up to this. A few weeks ago I noticed some flashes of light out of the outer edge of my left eye. It happened mostly at night while walking the dog, or if I got up in the night to pee. It didn't concern me, much, as many years ago I had a few experiences of "aural" migraine headaches; the only symptom was a weird visual distortion when I experienced bands of color in weird patterns. It went away and I was assured it was nothing to worry about. So I figured that the flashing light was something like that. Those flashes stopped after several days. Then I noticed a lot of "floaters" in the left eye. I've always had those but it was different now, smaller and darker and more of them.

Claudia and Otto were visiting us from Berlin since Friday, and although in the background I was increasingly worried about these symptoms, I wanted to enjoy our time together. So I promised myself that I'd take care of this yesterday when they left. And did we have a wonderful time! They are serious bikers, and we spent 4 days on bikes. Friday and Saturday in Boston, then we took a ferry overnight to Provincetown on Sunday. And it was glorious! We enjoyed seafood at Legal Seafoods Harborside - raw oysters, the whole deal. Then we pedaled to the North End for cannolis at Mike's Pastry. Followed the Freedom Trail back to the Boston Common. Absolutely wonderful.

I called my PCP office yesterday morning, and was told to call the opthamologist immediately. I called them, described the symptoms, and they told me to go in right away. So I biked there. Typical, right? The doctor dilated me (that always sounds sexual to me!), took a look, and got right on the phone. She said I needed to see a retina specialist either at an office or the ER of Mass Eye and Ear. She offered a doctor who worked Tuesdays in Taunton, which is about an hour south of Boston. I called Mark (where would I be without him?) and he said he'd take me. He literally dropped what he was doing, leaving an uneaten salad on his desk to rush to pick me up.

Then we spend some hours in the Taunton office. The retinologist (I think that's a title) dilated me again. By this time I look like a drug addict with huge pupils. Now both eyes. He found that the left retina was detached but there were lots of smaller tears on both eyes. So he gave me a laser treatment on the right eye to take care of the biggest tear. Hopefully it won't detach and I won't need surgery on the right eye. But it will need more laser treatments. He just went after the most threatening one.

On the drive to Taunton, Mark commented that my behavior and affect are always so consistent these days. That's largely true but of course not entirely. He asked if I was upset. In that moment I was fine, but at the office I lost it a few times. Very tearful and scared. Especially when the retinologist asked me to sign a consent form with really scary potential outcomes. Halfway through I told him I could not listen anymore, but he said he had to tell me everything. Wow.

I don't like to follow rules unless they are my own and then I do what I set out to do. So this is going to be a real challenge. I really have to pay attention or I could go blind in that eye. So if you see or hear of me doing things I should not, please kick me! Last night Mark already started his care taking. He made dinner, cleaned up, took Sasha walking.

Narayan's homework for the summer was, "can you relinquish your suffering". This will be the summer of relinquishment. Letting go of my identity as an active, bookish, healthy person. Letting go of it all, including my fear and anger about this happening.

Namaste.
May we all be free of suffering.

Of all things - a detached retina

I have some really bizarre news.

The last few weeks I've had some visual disturbance (flashing lights, lots of floaters) and went to opthamologist today.

Turns out that I have a detached retina that needs emergency surgery. I actually had laser surgery on my "good" eye today.

I am going to be completely sedentary for 4-6 weeks and may not walk or exercise, or really use my eyes. I am not to read, text, email, anything. All I can do is sit in front of the TV. That is like a torture for me. I can't garden, walk the dog. Nothing. Of course the Pan Mass Challenge is probably not going to happen, either.

I'm still in shock.

So am trying to tie up any loose ends between now and surgery on Thursday.

As of tomorrow I'm off-line for weeks.

I can talk on the phone only.

What is the lesson to be learned with this one?

Sage, Ruin, Bits of Bone

This poem was written by my friend and neighbor Paula Sayword. It is a tribute to her granddaughter Ashley who died of a heroin overdose on December 11, 2012. Mark and I spent a lot of time with Ashley when she lived in Boston from fall 2009 until spring 2010. We often drove her to and from the city as her family lives up the dirt road from us out West. We spent many hours talking about all kinds of things, mostly her hopes, aspirations and romance heart-aches. She taught us how to text! She sat in the back seat, texting a mile a minute while she chatted away with us. She was lovely and we really enjoyed out time with her. I still can't believe that she's gone.

From what her family can piece together, she was introduced to heroin at a party in April and by December she had a serious addiction and died of an accidental overdose. I haven't written about this yet out of respect for the family. But Sayword just sent this amazing poem and said it was fine to share it.

Sage, Ruin, Bits of Bone

by Paul Sayword

We wanted to give you something you could not lose

something that would stun you,

tear the blue wide open,

take you in so you could begin again,

this time with your sadness washed away.

But it was not to be, clouds too thick,

sodden with an anguish you could not part with,

an anguish sitting just inside the door to yourself,

a door we could not unlock.

Ruin, rock, sky.

We found ourselves driving on a dirt road

in the middle of nowhere.  Grazing land

on either side, nothing but denuded earth,

occasional cattle and skinny horses, relentless

wander in search of something sustaining.

In the back seat your ashes lay in a soft deerskin pouch,

a photograph of you in my left breast pocket.

Our grief hard and long with the loss of you.

It was your twenty-third birthday and you were dead.

Wind, weeping, bits of bone.

Steep climb up an ancient stairway

to the top of a mesa, parched hike  

above a pueblo empty of life for a thousand years.

A harsh wild beauty, but oh how you loved it there,

just a year ago, before you found the brown horse

you could not stop riding through rivers of blood.

We carried you against our hearts,

made a circle of stones on a shelf of rock.

We gave you to the four directions, to those who

had gone before.  We gave you to the wind.

Sage, corn, tobacco, dust.

Can you renunciate suffering?

Last night was the last class in the spring series at the mediation center.

We have been working with metta since last fall. Last night after our usual 45 minute sit and 15 minute walking meditation, Narayan invited any who wished to speak about their experience with metta. It was really beautiful to hear what others had to say.

She always gives "homework" and she asked us to ponder the following question over the summer:

Is it possible to renunciate suffering?

She had to give the question a few times, as some misheard it as, "is it possible to renunciate 'something' rather than 'suffering'. That caused a lot of laughter. Of course you can renunciate eating chocolate [not me!] or something like that, but suffering itself?

Now that is a radical path!

Get on your bike!

Yesterday I went to the local bike shop to pick up the biking skort I ordered. [I am trying to minimize online buying and maximize buying from local stores as much as possible. And can I say how fantastic biking skorts are??] Anyway, for whatever reason I had on my sports bra and tight biking shirt but not the prosthetic. I figured I really wasn't going to see anyone other than a quick stop in the bike shop. The prosthetic is hot and sticky when exercising. So I'd just as soon not use it.

The back story is that the bike shop owner, had brain cancer last fall with surgery followed by a lot of rehab. It is a miracle that he survived and is able to work, function and bike. He knows that he has difficulties now but he tries to live as normally as possible. He's a great guy.

On my way out, he said, "Lola, you are the cutest thing ever, especially in your skort." Sweet. He knows I have had breast cancer. Then he stepped up close and said, "I notice that you continue to wear tight biking shirts as always. My wife had breast cancer and now does not want to bike anymore. I sure wish you could talk to her and let her know that it is not a problem. I don't care. I didn't marry her for her boobs" I was kind of embarrassed for a minute and asked if he noticed the lack of the prosthetic. He said "yes". And then the conversation got really interesting.

He talked about how depressed she has been, how difficult it has been to return to "normal". I offered to meet with her and perhaps do the next group ride together. This is exactly why I am inspired to go into private psychotherapy practice with a focus on breast cancer.

Maybe I can help others feel good about their body, and get out there on their bike!

All Clear!

Today was scan day -- and all is well. Mark went with me as Lucy is traveling -- but she was there with us in spirit!

We saw The Vixen, the first time since January 2012. She says that's good, actually. Patients who are doing well are managed by her nurse practitioner, who is also wonderful. So the upshot is that I am doing great. She says that she has never had a patient like me before, someone with metastatic disease who continues disease-free at almost 5 years. She says, "we are in uncharted water". There are no protocols. We make it up as we go along. Of course under her astute clinical judgement. But still. The normal rules don't seem to apply here.

We talked a lot about where to go from here. She is conservative in her approach and believes that less is more. Which is why we get along so well. We agreed that I will not take Zumeta anymore. I was getting that infusion every 6 months. I will get scanned again in 6 months, but if all goes well, we will move that out to once a year. And the other medications, Lupron and Tamoxifen. When I turn 53, we will discontinue to Lupron, too. That's just a year or so away. And lastly, she will take me off Tamoxifen, too. But that will be a while yet.

So potentially I will have had metastatic breast cancer, but am off treatment altogether. Wrap your head around that one!

I didn't have time to do meditation yet today, but it will be an all-gratitude practice.
Amen.

Lockdown

What a week we've had in Boston.
Mark and I are fine. Which is not to say that things are fine.

I drove out West on Thursday night so did not experience the lockdown. Mark had planned to work on Friday but his office was closed and he couldn't leave the house in any case. He texted me about 6:30am yesterday and told me to turn on the news. I had WBUR (our local national public radio station) on live stream all day until 10pm last night. I tried to take an occasional break but was absolutely riveted. These are our neighborhoods! It was (and is) so bizarre. The meditation center is blocks away from where the police detonated in Cambridge. Narayan actually lives in Watertown.

She taught meditation class on Tuesday so I'd just had a good dose of her. It was really helpful to keep her in mind as these events unfolded. Years ago my aunt used to have some guest towels emblazoned with the initials "WWMD" which means "what would Martha [Stewart] do". It was a joke because my aunt's name is Martha, too. But these days I live my life as best I can according to other initials, "WWND". What would Narayan do.

As best I can, I am trying to live in alignment with wisdom and compassion. I fall short all the time, every day. But it's my inspiration.

"Yes" by William Stafford

I have been very eager to be with Narayan since yesterday. I am thirsting for spiritual guidance, how to make sense of the bombings, the devastation, the suffering.

She taught tonight which was really a blessing. We sat in silence the first 30 minutes, then she gave us a guided metta practice the last 15 minutes. She gave us these words:

May we all have ease of mind,
Comfort of heart
and may we live in love
and in compassion.

We started with ourselves, then brought awareness to everyone in the room, then over the river to Boston. Metta for all directly and indirectly affected by the bombings. Then all over the world where this is a part of daily life in some places. It was very moving.

She read this poem which sums up her teaching tonight.


"Yes"

It could happen any time, tornado,
earthquake, Armageddon. It could happen.
Or sunshine, love, salvation.

It could, you know. That's why we wake
and look out – no guarantees
in this life.

But some bonuses, like morning,
like right now, like noon,
like evening.

William Stafford

Boston Marathon Tragedy

Mark and I are fine.
I was on a bus from NYC to Boston when I heard the news. Surprisingly, the decision was made to continue ahead into the city. We got to South Street Station and it was swarming with police and scary looking dogs. The trains were shut down, no taxis available, streets closed off; so the only option was to walk home.
The streets were full of ambulances, sirens, panicked people.
I skirted the Copley area.
This was totally unnerving. I walked all the way home. Fortunately I had packed light for the weekend.
So freaky and scary.
Hard to understand why someone would do such a violent act.

Tragic.
So far a few have died but many injured -- and badly hurt. I saw an image (that was later cropped and less graphic) of a man who was a spectator with both legs blown off. I will never forget that photograph. Mark has been a volunteer at the marathon in previous years. That man could have been any of us. He was probably cheering on a friend or family member.

Wow.
And so we send metta, right?
I sent metta while on the bus ~ when I wasn't anxiously scanning for more news.
I thought ~ how would Narayan respond to this?