Sylvia

I woke up with a kind of clarity and optimism that I have not experienced in weeks. I wonder if I can get this all down in a way that makes sense.

For starters, I think I really hit the nail on the head (and a shoutout to my support network) vis a vis that it is the struggle rather than the cancer/chemo that causes psychic pain. Here's something else that causes psychic pain: judgement. It's when we judge others we also become prone to judging ourselves. And to be in the world in a judgemental way is not only icky, it's also debilitating. I have a real-life example.

Last week at Dana Farber, I almost literally bumped into Sylvia at the salad bar. She is 82. She has cancer. She was alone, pushing her own wheelchair and trying to get a cup of chicken noodle soup. She was crying because the doctor had just told her that she would die. I offered to help. My sisters and I carried her lunch and wheeled her past the cashier and into the cafeteria. For about a half hour, she talked to us in her Boston Brahmin accent about her long life and about the family she loved so much. She was crying throughout but her spirit came through, loud and clear. One thing she kept repeating was, "I'm not ready! I'm too fit! I have too much to do!" I couldn't help but remark to myself that these were my exact words when my diagnosis came. And she is 82.

I wondered over our brief encounter why we she wasn't ready. At 82, she'd seen much, done much, and loved many. And to my regret, part of my wondering took the shape of judgement. Why not be ready at 82? At what point do you let go? But as she continued to talk, I began to understand in the most compassionate way why she wasn't ready. Her son, who is 60, has CP, and he needs her. Her husband, an innovative physicist, was in decline due to Alheimer's Disease. He needed her  too. She was hoping to go last.

Though we all teared up during the conversation, we also laughed too. She told us about how much she loved to dance and generally, in spite of the cancer, how well she felt. As we parted, she got out of the wheelchair to demonstrate her most excellent high kick and how she could pull out a flat-handed toe touch without even warming up. She told us that we three 'girls' had made her day. But really, I think she made ours. I've been reflecting a lot about our encounter and how harsh and derailing judgement can be. As we parted, I threw my best high kick her way, which wasn't nearly has good as hers. 

So yes, it's the struggle that causes suffering but it's also judgement. Each day, I try to remember to say the prayer of Saint Francis and one of the lines says, "It is by self-forgetting that one remembers." I would be foolish not to parlay my encounter with Sylvia as an invitation to re-direct this chapter of self-pity into something that is more workable. Sylvia allowed me to forget so I can remember. It's taken a few days to make meaning out of it, but I am remembering. I'm remember what is good in this situation and also, how much more loving and lovely the path is when I can shed my orientation around judgement.  I guess there are always angels in our path but the ones I've met during this journey have made me cry, not just out of sadness of life, but also out of the sweetnes of it too. I am sending Sylvia my gratitude and  my best prayers for love and longevity. 

Sad-Happy

I have never run a marathon and though I like to exercise vigorously, I don't ever plan to. But am at what I imagine to be the difficult 14th mile. I've come far but there is still a long way to go. And I have lots of sad-happy news.

The first is that the robins flew away this morning. I checked on them last night and they were there. I heard them peeping early and then when I got up and looked out on the porch, they were gone. It's curious. I'm so happy to have been a landlord and a witness. And I'm happy they made it and that we three provided a supportive, nurturing origin. But I'm sad they are gone. It feels a little lonely on the porch. I'm really hoping to at least see them around the neighborhood.

On other sad-happy news, I got good news at the surgical consult. I'm still on track for a smaller, simpler surgery. The reason I say it's happy-sad is that I didn't hope for surgery or cancer or chemo at all. And while I feel I should be grateful for this news, I guess I realize I'm still struggling to accept it. And I'm coming to realize that it is the struggle and not the cancer that is the real source of the suffering.

I've also decided to forego the bike trip this summer. I got some good advice that while it's not out of the question, it wouldn't be as much fun as it might be at some other point. I'm sad about it, yet I do feel it is the right decision. It's part of a larger pattern of pairing down. I'm tired now so I'm doing less, exercising less, napping more. I'm needing more help and very reluctantly, accepting it. I'm trying really hard not to view this as giving up but more as self-care. For whatever reason, whether it's history or temperament or style, it's a tough sell for me.

Someone very dear to me has reminded me that some people choose a life of begging as a spiritual path. I don't totally get it but it does bear some examination. I think it speaks to the idea that it is easier to give than to receive. I gotta be honest, I  like being the person making and delivering the covered dish rather than the one receiving it. But there is that struggle again.

So for now, I guess I sit with the struggle. And maybe I ask if there isn't an easier way. Like what about leaning into my faith? What about surrendering? What about accepting what is? I think these are the right questions to ask. I'd like to find the answers but I don't have them just yet.

Mixed Bag

I just finished my fourth and last treatment of red sunshine. This alone is a cause for celebration since it has the reputation for being the more vicious of the 2 regimens I will take. Further, my oncologist was very happy with the ongoing diminishment of the tumor and in fact said, "woo-hoo," in response. And yet, I'm really down. Tired maybe, and bloated feeling in all this heat. I realize that I tend to have a flourish with words but I search for the word to describe my inner state, the word I come up with i...s persecuted. If I was in a Harry Potter movie, I'd equate the infusions with howlers; a newsflash that all will not be well for several days. But oh well, right? I always remind my kids; things change like weather. The only thing we can reasonably predict is change, if not day to day then certainly week to week. Even when you want to hang onto a mood or a physical state, it will inevitably  float away... like a kite, beyond your reach. If you are going to acknowledge and honor your emotional life, you have to live with this truth.

So I'm thinking of trying a little cognitive behavioral trick for myself and posting happy things.

I had a really great birthday. I got to see Paula Poundstone live. She talked about obsessive compulsive disorder and how one manifestation of the disease is getting a song stuck in your head. In her case, she's had the song, "Billy, Don't Be A Hero," in her head for 30 years. Evidently, you don't get to pick the song. Above I've posted the sweetest birthday card in the world from family and friends... thanks!

Also, the best news...I'm happy to report that the robins hatched the day before we returned from what my son once termed, 'cation. I've waited to take a photo because at first they appeared as a pulsing mass of prehistoric life tissue. It was ugly. But they have matured and are now at the stage where they lift their beaks when they hear noise. Just like real babies, one minute they are scootching and fussing and squeaking and then next minute they are passed out to the point of appearing comatose. I'm trying to reisist my own obsessive compulsive urges and stop visiting the nest fifteen times a day. Anyway, pretty great, huh?

And this just in... my darling girl got the camper's award at her UNH Volleyball Camp this week for the second year in a row. She played volleyball from 9 am to 9 pm, 4 consecutive days and worked her little buns off. When the coaches provided a setter's clinic during lunch break, she was one of 4 campers to attend. Even before she got the award, I was feeling so proud of her. How she packed and prepared herself for the week, how she was up on time, ready, and based on feedback from coaches, how she supported her teammates. What a kid. I know it sounds like I'm boasting and maybe I am. But I don't take credit. I've always kind of scratched my head at her-- she came to me as one little contained unit of toughness, discretion and developing personhood. It's been my privilege to be her witness.

Tomorrow is a new day. Thanks for reading. Again.

.

Trail Magic

One of the good things about a scary diagnosis is that it forces you to take what was previously an abstraction (death) and inch it a little further along the continuum toward the concrete. It's unpleasant work, but it's important and likely even inevitable for all of us to grapple with. As I sit on the beach this week, I consider all the good news I've received vis a vis my health status and I feel thankful. But I also have to sit with the fact that what I am facing is both serious and dangerous and that cancer is one of those diseases that seem to have its own dictates. I not only find it very hard to believe, I also find it very hard to accept. Like old-time sailor who relied on the stars to chart and correct their course, a diagnosis begs you to look up and around and ask the big questions. Like wat else might we do with these wild and precious lives we've been given?

This year I had the best fourth of July ever. Picture this: a beautiful New England day with a sun-washed blue sky. My family, including all neices and nephews, gathered at my parents house on a lake. We did the usual; sat on the porch, talked, and drank beer (not me). My dog was the star. She got in the water with the rest of us and dog-paddled her little fanny ight into the middle of the lake. When she got tired, she regally perched on a knee board so that she could stay with us. The thing about the day that touched my heart most was when my sixteen year old nephew invited me out in the lake to float with him. He talked about school and football, I asked him questions, and we held hands periodically to avoid drifting apart. My heart swelled then and it swells now just thinking about it.

As my kids and I piled into the car, stuffed, sun-burned and tired, I was considering my course to this point. How am I doing? Is this the life I'm meant to live?  My conclusion feels almost too simple. My answer, with a capital Y is yes. This is the life that feels true to me. This is the work I'd do if given a choice. These are the very kids I'd choose to invest in. The remarkable truth is that there isn't anywhere I'd rather be nor are there people with whom I'd have rathered share that day. It was my best fourth of July ever.

My aunt sent me an interesting book called Wild: Lost and Found on the Pacific Trail by Cheryl Strayed. I read all 300 pages in two days at the beach. The author entered into a dark period in her life at the age of 22 when her mother died of cancer and her family fell apart. She made a series of increasingly dangerous choices (infidelity, heroin, and on and on) until a stray idea crossed her mind;  that she could be saved by hiking the Pacific Coast Trail. While she was outdoorsy, she'd never backpacked before. Her journey was long and difficult to say the least (she lost 6 toenails, to give you an example) but indeed, the physical hardship did help her resolve her emotional unrest. Along the way, she described what was painful and scary in great detail and much of the journey was. But she also found, in the verncacular of the PCT,  a generous share of "trail magic." In the book the author defines it as, "the unexpected and sweet happenings that stand out in stark relief to the challenges of the trail." I can't help but parallel this to my experience with breast cancer treatment. I'm doing really, really well and... it totally sucks. I hate chemotherapy. It's hard to understand why I have to sacrifice my overall health for the sake of 4 centimeters of evilness but I do. By far, the hardest part is the terrifying metabolic roller coaster that surges with such force I have to sometimes curl up in a fetal positon. And yet, I'm experiencing my own brand of trail magic;  holding hands with my nephew in the lake, hearing my daughter's laughter on the porch, watching my previously timid son ride waves for hours on end, receiving the care of my sisters with such gratitude. I was speaking with a friend at the outset of this journey and she suggested that it will likely be a crappy summer with a few good moments. I ventured cautiously that it also could be a good summer with a few crappy moments. At the time, it seemed incredibly naive or optimistic or both. But I'm just about halfway there and it's starting to feel like it's actually true. I'd love to not be going through this. That would be my first choice, gifts and all. But since I'm here, I'm glad and grateful to be present to trail magic as I am learning to experience it. And I appreciate the right book at the right time for giving me the words.

In my old blog, Gratitools, I posted an entry about robins sometime in March. Around that time, I became aware that robins were crossing my path at what seemed to be every turn. From my yard to the parking lot of the mall, they seem to be everywhere. Once, in Pittsburgh, I went for a run and lost count at 30. When I needed a lamp for my home office I went to HomeGoods and it seemed right somehow to purchase the one with the robin on the stem, even though it was broken. Robins, robins, everywhere.


Before the diagnosis, all of this robin business reminded me of the day that my divorce was final. Have you ever woken up from a night's sleep and had song lyrics or a phrase in your head? On that particular morning, I woke up with a stanza from Emily Dickinson's poem, "Hope," on my lips. It was the one that says, "Hope is the thing with feathers, that perches in the soul. And sings the tune without the words and never stops at all."


It was weird because though I am a fan of poetry, I'm pretty neutral about Emily Dickinson. Further, I don't really remember reading, studying, or considering that poem at any length. For what it's worth now, I really like this poem and I welcomed it's presense on that dark morning in March. It felt like a good omen that my kids and I were on the right path.


I know that there might be scientific reasons for why I see robins everywhere. Reasonably, it could be the mild winter we had. It could be lots of other things, too. But because of the frequency with which I have been encountering them, I googled, "robins as an animal totem," and here is what I came up with:




A Robin symbolizes new growth in all areas of your life. 
Believe in yourself as you move forward. 
Obstacles will fall by the wayside if you do and confrontations will be for show only. This totem gives you the ability to will new growth into your life.


I know. It's a little woo-woo. But it's a little bit interesting, no? Then, last weekend, I noticed a beautiful nest perched atop my hanging impatiens on the front porch. The nest itself is amazing. When you close your eyes and picture a bird's nest, this is exactly what it looks like; perfectly symmetrical and scooped out on the inside and pleasantly rough and rustic on the outside. The nest was empty and I figured that whatever bird has constructed this architechtural masterpiece has decided that our front porch is too heavily trafficked to nurse little ones to life. Which, given how much we enjoy our porch in summer, would be a reasonable conclusion. But then, 3 days later, my son noticed 4 perfect green eggs in the nest. So we moved our business to the other side of the porch and since then, this fat mother robin, my kids, and I have been cohabiting peacefully.


 I am resisting the urge to go downtown for some police tape to rope off that half of the porch but I've been told by my teenager that this is an extreme response. The author, Dawn Markova, has observed, "I don't think anyone finds joy. Rather, we cultivate it by searching for the preciousness of small things, the ordinary miracles that strengthen our hearts so we can keep them open to what is most difficult."


Tomorrow, I have an appointment with my own personal sledgehammer. I've have enough experience now to dread it with every cell in my body. I've had a whole bunch of good days here where I actually feel like myself, more or less. It's hard to willingly sign up for about a week of what feels like the most unpleasant metabolic roller coaster ride. But the presence of this nest, of this nurturing parent right here on my front porch has strengthened my heart, somehow, and I am most grateful. I will post the arrival of our new residents-- I googled that too and it will be in about 10 days. Can't wait.