Crashing in the Wave

I stumble over my answer to the question, “How are you?” because I don’t really know what’s going on with me these days. Except that I’m not fabulous. Some hours I’m not even sure if I’m okay. But then I think maybe I am, after all. (In other words, there are all kinds of confusion, not to mention all kinds of emotion, swirling around on my insides.) How can someone (me) who analyzes and reflects upon and over-thinks just about everything not even know how I feel?

Last night, I told Josh, “I feel separate from everything.” Not in a woe-is-me, no-one-understands kind of way. In an I-feel-like-I’m-in-a-haze kind of way, and I can’t even access myself, much less fully engage with the world or people around me. At times, I feel like a wax figure, fake-experiencing my day.

Except mostly it’s not so neutral-numb-feeling, because I also feel like my whole body is a grasping fist. (I am trying, oh how I am trying to let go, to let that wind carry me, but I feel like I am in an almost constant state of contraction.) Every – little – thing – overwhelms me. How is it that prior to my breast cancer diagnosis, I was working close to full time, more or less single-parenting two kids while my husband put in his 80-100 hours/week of grad school, engaging in a busy social life, making home-cooked meals and paying bills and cleaning my house and returning phone calls… and now, I can barely get my kids a cup of water without feeling like there is too much on my plate? That’s a bit of an exaggeration, but only a bit. I’m not working and my husband is home for the summer, so my main commitment is co- (not single) parenting and getting to doctor appointments, and yet (here it is again): every little thing overwhelms me.

HeadOnDesk But here’s the other thing that scares me: I’m not keeping up. I’m used to overwhelm, but I’m also used to that overwhelm making me highly productive. Thanks to my Type-A personality and fairly constant free-floating anxiety, I’ve gotten a lot done in life (successful career, happy kids, hand-made gifts, clutter-free home). So the fact that it takes me days to listen to my voicemails (I’m so sorry) and that the other day someone emailed my mom looking for my new address because I hadn’t gotten back to her (nope, no new address here) and that I haven’t read the newspaper in weeks (just keep looking over my shoulder as I slide it into the recycling bin, hoping no one will catch me being terribly uninformed while also unnecessarily destroying trees)—well, it’s disconcerting.

For decades, I have longed to be less Type-A because I have longed to be less anxious, more laid back, more able to, say, sit still rather than being in constant-doing-motion. When I was in chemotherapy and as still as I’ve ever been in life, I had one of those “cancer changes you” commitments to once and for all live a slower, simpler, calmer life. I say this because, if dumping my unread paper in the recycling bin and letting people wait before getting an email response was making me more relaxed, I’d rejoice. But the fact is, now I am anxious and unproductive… which only makes me more anxious. (Not to mention bummed out that my cancer-commitment to change my life isn’t working out so well these days.)

And just about everything gives me yet more reason to feel anxious. Like finding this blog that I absolutely love: Invasive Duct Tales. I literally (yes, literally, not figuratively) feel like I am reading my own writing at times. Which sounds egotistical, that I love it because I love my own writing; but I love it because I feel like I’ve found someone on the internet to whom I can relate—someone who makes me think, “Me too!” And of course there is comfort in that. But reading it yesterday, I suddenly felt the opposite of that expansive-love-feeling; I felt that contracted-anxious feeling, because she’s a successful blogger with awards and gazillions of followers and cancer-has-opened-unexpected-doors opportunity and me, all I am is a wax-figure lump surrounded by unopened mail. (You really should check out her blog, though. In fact, I thought about simply including a link to her most recent post in lieu of composing my own since I felt like 92.4% of what she wrote could have been describing me, including the fact that her husband is named Josh—that, and how she describes her mood, and her reference to “riding the wave” which is how I’ve described my cancer experience and hence titled my own blog, really did make me wonder for a second whether I had somehow gotten confused and truly was reading my own writing.)

Writing this post has me thinking a few new things:

  • I sound like I am describing a depressed person, which is eye-opening, since I’ve really felt like I wasn’t depressed anymore; but maybe I have a touch of it after all.
  • Does this post really have to do with breast cancer, and isn’t that what I’m supposed to be writing about here: riding (writing) that wave? Have I derailed? And either way, aren’t people sick of hearing about my emotional state? I can add that to my list of anxieties. I’m (sort of) joking.
  • I actually think my current state has everything to do with breast cancer. With my hormone treatment. (I’m going to keep blaming it on that, okay? It makes me feel less pathetic, less like it’s my fault that my family has to put up with irritable, unpredictable me.) With the fact that I don’t feel comfortable in my body anymore and even wonder whether reconstruction was a mistake. (I’ll save that for another time because I can’t handle opening that door any wider right now.) With my fear that the cancer will come back. With the fact that I look at my daughter and wonder, “Will she have to go through this some day?” With the fact that my body feels tired and old and broken down by months of treatment and even though everyone keeps saying I’ll get my stamina and strength back—that, for example, I’ll be able to run faster than an 11-minute mile or more than 3 miles in a row again—I’m really not so sure.
  • It’s time to get back to my gratitude practice.

From the Other Side of Surgery

The last ten days has felt like a trip through multiple time zones. I have moved in and out of emotional states quicker than I could land in any of them. I have also moved in and out of full anesthesia, followed by regular doses of pain meds; so that, coupled with the time-zones-slash-emotional-states has left me blurry and, to be honest, grasping for solid ground.

But let me back up and share, first, that all-in-all, I am feeling much better than expected post-surgery. Certainly physically. I have minimal pain. Some discomfort, especially at night, but nothing I (pain-wimp) can’t handle. I also have more mobility than expected. After three nights of sleeping half-sitting up, I can now fully recline and even lie on my right side. I have been warned by others who have traveled this road to be very careful. To do less than I think I can do. To not reach for that glass in the cupboard nor comb my children’s hair. Though because I didn’t have a double mastectomy, I can do both of those things with my right arm. Mostly, though, I lie in bed or on the couch and (I admit) watch a tremendous amount of TV. I haven’t been able to make much sense of my book. And until today, I haven’t been able to face the blank page to write. I have gone for one or two (very) short walks each day. (Starting in the hospital when I walked to the end of the hall and back. Who knew how exhausting that could be.) And tonight I ventured out for my first big event: the breast cancer support group at the Cancer Connection. Just being in that room made a difference in my emotional state. Yesterday was a dark-cloud kind of day. Today I felt some light.

But let me back up again. To my family’s return from Arizona. (Oh what an amazing trip. Oh how I long to be back there.) After months of dreading the arrival of my surgery date, all I wanted was for it to come already, so I could stop the waiting, the anxious, anxious waiting. By Tuesday night, I was almost excited to wake up the next day and go to the hospital. Relieved (to finally be done with the waiting) is a more accurate description, but relieved almost to the point of excitement. And I was calm. I composed a blog post in my head that I never did write; it went something like this:

I am not carrying fear to the hospital tomorrow. I am ready. I will be thinking about: (And here I posted, in my head, a series of pictures, which perhaps I will post, for real, tomorrow, when it is no longer the middle of the night: the Arizona red rocks; my closest Northampton women friends gathered around a dinner table with me two nights before surgery; some kind of adorable picture of my children; perhaps a bird being carried by the wind.)

I took my children to school Wednesday morning. I came home with just enough time to watch the slew of selfie-videos texted by my beloved Brooklyn crew. And then I drove with Josh to the hospital, with Maggie following behind in her car and my parents behind her. I met what turned out to be a most remarkable surgical Image 1team. I might have made inappropriate jokes as the drugs hit and they wheeled me to the OR. I have a vague recollection of referencing Grey’s Anatomy and warning the docs to be on better behavior than the ones on TV. I also remember a giddiness, like I wanted to hang out and drink beer together. And then, moments after taking in the bright lights and metal carts and thinking, “So this is what an operating room looks like,” I was out.

In the hours after I woke up, I remember a few things: eating left over pasta with Josh and thinking it was delicious. Not being able to open my eyes, they were so heavy with fatigue, so talking with closed lids to the medical people who cycled in and out to check on me. When someone checked my bandages, making the conscious decision not to open my eyes because I was too terrified to see my new body; wondering whether I would ever be able to look. Several hours later, wanting to look; looking; and feeling okay—and then feeling such tremendous relief about feeling okay.

All this happened sometime between Wednesday evening and Thursday afternoon. By Thursday night, I was home. By Friday night, my friend Jenae was here for the weekend (by my side along with Maggie, Josh and my parents); and my kids were gone for the weekend (having the time of their lives with my in-laws and nine of their cousins).

And I spent the next several days continuing to travel through multiple time zones and emotional states. I’ve done a tremendous amount of grasping. Wanting to be back in Arizona with my family. Wanting another taste of that giddy feeling I had in the OR; another taste of the relief I felt taking my kids to school on Wednesday morning, knowing I would soon be on the other side of surgery. Wanting time to stop moving so fast. Wanting my children to keep being children. Wanting my friends and family to keep showering me with love. Wanting to land in a time zone, in an emotional state, on my own two feet, long enough to catch my breath.

Today, Tuesday, I think I finally felt some ground beneath my toes.

Let’s see what tomorrow brings.

Grasping and Being

How easy it is for the grasping to sneak back in—like weeds pushing up through cracks in pavement, but less lovely. Still, I am trying to slow down enough to notice both (the grasping and the patches of green in grey cement).

With the grasping, I am trying: “Look. There’s that anxiety again; the wanting-things-to-be-a-certain-way thinking,” and to keep walking, letting each go as a passing thought that is not-me.

plant concreteWith the weeds, I am trying: “Look! Look at the patches of green in grey cement!” and to bend down and notice the tendrils of stem and leaf reaching toward sky. An image of hope that, had I not slowed down enough to see, would be crushed under foot.

Today is our last day in this wide-open Arizona sky. Our last day surrounded by red rock and hours upon hours with nothing to do but be.

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I am proud of myself for not grasping too hard. It is not uncommon for me to leave before it is time to leave: to inventory all that will soon be “lost”; to mentally transport myself back to the to-do lists waiting for me at home before I actually am home. So I am proud that this morning, when I woke up counting the number of hours until we leave this place (22) and the number of days until my surgery (5), I didn’t crawl down the dark and endless hole lined with accompanying thoughts. Instead, I did what needed to be done (return the pre-registration call from the hospital; leave a message for my oncologist); and what I knew would help (watch my thoughts like an outside observer watching the passing clouds; listen again to IMG_1043_2Belleruth Naparstek’s pre-surgery relaxation CD); and then what I wanted to do (write; play pool—and in the pool— with my family; soak up every last minute of this glorious place and time).

Still, I am aware of how utterly precarious this “just being” is. Sitting here now, I feel the precariousness in my bones; feel how easy for the “just being” to turn into yet another form of grasping—of me trying desperately, desperately to sink into presence. It is like walking uphill at the Grand Canyon. Stunningly beautiful, and so damn hard.

But also an absolute must. (After all, I don’t want to miss out on a “once in a lifetime” experience!) And so, I keep coming back: to this moment, to the passing clouds, to a splash of green pushing through concrete.

To-Do Lists, the Grand Canyon and Gaining Perspective

My wonderful new writing friend asked, in response to my last post, whether I might share what’s on my “fitting everything in before surgery” to-do list. Great question, as I’d love to know what’s on other people’s “fitting in” or “living life to the fullest” or “I’ll feel complete once I….” to-do lists. What do you want to accomplish before you go to sleep at night? Before you reach the end of this life?

I’m big into lists. Ask me any day of the week to see one, and I can show you a running list of varying sizes, urgencies and purposes. My pre-surgery to-do list included everything from the mundane to the social to the creative to the meditative: cleaning out my email inbox; making my way through the growing pile of papers on my clutter table; purging closets and garden sheds and basement shelves; making time to walk, eat, tea with new friends; making time to reconnect with old friends; finally finishing Sophie’s and Harrison’s stalled baby books; organizing my most recent photos; reading Prepare for Surgery, Heal Faster; listening (often) to the accompanying CD; carving out time to slow down and relax.

Just writing that to-do list makes me breathless, which is how I was the last couple of weeks, until a couple of days ago when my family (Josh, Sophie and Harrison, my parents), climbed into our minivan at 6 in the morning for the first leg of our journey toward the Grand Canyon. Image 26

Not long after I was diagnosed with breast cancer in October 2014 and told I would need surgery, I knew I wanted to take a trip beforehand. I wasn’t sure when or with whom it would happen, but getting away felt important. And important it has been, even more so than I first imagined. Because after weeks of anxiously trying to “fit everything in before surgery,” I am relaxed. I am happy. I am having (one of the things on my to-do list) quality, focused, fun time with my children and with my myself (not to mention my husband and my parents).

And not only am I relaxed and happy and enjoying my children. Yesterday I got to see the Grand Canyon for the first time.

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Yesterday I also listened to Belleruth Naparstek’s pre-surgery, relaxation CD (thank you Linda and Elanit), and as soon as I closed my eyes, I was surrounded by millions-year-old, red rock. Surrounded by open space and long-ago history. Surrounded by—immersed in—perspective and gratitude and calm.

I am but a speck on a speck on a speck on a speck. Somehow, sinking into that fact has always calmed me. The same way that sitting on this porch and looking out over the wide-open Arizona landscape, with its wide-open sky, calms me. If my life, my breast cancer, my anxiety, my to-do list is but a tiny speck, then why get weighed down by any of it? If I am so unimportant (what a liberating thought!), then what else is there to do than feel this warm breeze on my forearms and toes? What else is there to do but soak in my son’s voice from the other end of the porch and the crow’s call from across the trees? What else is there to do than sink into this moment, fully and completely? (Amazing how as soon as I do sink in, I also hear the wind in the tree in front of me, which sounds different from the wind in the grass to my left and different still from the wind in the tree on the other side of the fence. And then there are the birds: the constant chirp, chirp, chirp interspersed with the occasional, more high-pitched call in the distance and the even more occasional cacophony of birds meeting in the same tree with the wind.)

Harrison, knowing that neither his parents nor grandparents had been to the Grand Canyon before, kept saying yesterday, “This is a once in a lifetime experience! I might never see this again!”

And so is this moment, a once in a lifetime experience.

Easier for me to say and feel from this porch than when I’m sitting at home in front of a table over-flowing with bills and unopened mail. But the more I soak up each moment, the more I will carry this feeling with me—the same way I hope to carry those millions-year-old, red rocks with me. The more I soak up each moment, the easier it will be for me to feel the vast, liberating openness, no matter my next challenge; no matter what is next on my to-do list.

Middle-of-The-Night Me

I don’t sleep like I used to. It’s not my typical insomnia of hours to fall asleep (though that happens, too). It’s restless night after restless night, many of them with hours of being awake while the rest of the country sleeps. It’s night after night of facing those middle-of-the-night thoughts. I hate those middle-of-the-night thoughts. I know not to take them too seriously. Know that everything feels darker in middle-of-the-night darkness. And yet, dark they (the thoughts) continue to be. Dark and heavy and bleak and stressful and sad.

They are not the inspiring, “What will I do with my one wild and precious life?” thoughts. They are the daunting and hopeless, “What will I do with my one wild and precious life?” thoughts. (On a brighter side, I laughed out loud this morning as I read what this writer had to say about her insomniac thinking.)

Earlier this week, I spent the night in a hotel room with 3 of my dear friends while 8 of our Imagechildren slept in hotel beds next door. I went to bed joyful about our April break getaway—emotionally filled up by watching our kids thrill over the adventure; filled up by talking for hours on hotel beds with girlfriends. In the morning, I got out of bed joyful about the day ahead—more hours of thrilling adventure; more time with girlfriends. So why, with joy on each end, does the middle-of-the-night still bring such suffering? Why, on this particular night, did I spend hours listening to the rain outside and the heavy breathing inside and the incessant voice in my head bringing up one dark thought after the next? Some detail about work: how did I not realize until now what I should have done but did not do? A changed friendship: would we ever get back to what seems lost? My upcoming surgery… and panic panic panic about everything having to do with that.

I spent this middle of the night thinking about this article and this blog post about the medical and emotional travails of reconstruction. About what feels like the looming loss of my body and of my comfort (again, physical; emotional). About what feels like a looming turning point that will forever divide my life into “before surgery” and “after surgery.”

“Before cancer” and “after cancer” carry a very different kind of significance, by the way. I was telling someone recently that though I would never have chosen breast cancer, neither would I wish it away at this point. There has been so much learning and growing and opening that I wouldn’t want to miss out on.

I do, however, wish this surgery weren’t happening. Will I feel differently somewhere on the other side? Will there be new learning and growing and opening that I am happy to receive in exchange for my breast?

I had expected the sleep to get easier on the other side of chemo. Had hoped that restful nights would seep back in just as the fatigue seeped out. (And the fatigue has seeped out! Two weeks ago, I never would have managed that 31-hour wonderful whirlwind getaway with 3 girlfriends and 8 children!) But last week, my oncologist said that no, my sleep issues are not because of the chemo—not the kind of direct result, anyway, that will improve now that the drugs are leaving my system. Rather, my sleep issues are a result of my chemo-induced menopause, and hence they are symptoms that just may stick around. (For the rest of my life? I am becoming my mother in ways I would rather not become my mother.)

Back from my 31 hours April break getaway, I did not wake up in a hotel room with friends, and perhaps that is why I woke up feeling sad. Because there was no immediate distraction to shake off the middle of the night. Though I did sleep more, I also dreamed of men with guns taking over my village. I dreamed what I used to dream again and again as a child but haven’t dreamed for years—of trying (desperately trying, such panic and fear) to find a safe corner to hide. Of never finding a safe corner to hide.

Am I hiding from the middle of the night? From my upcoming surgery? From some corner of myself? Am I hiding because these days, I struggle to answer that question: “What will I do with my one wild and precious [work] life?” When I find a way to live my passion, will I also find my safety—and maybe even a restful night of sleep?

The End of Chemo: Reflections, Remembrances and Readying for the World

Yesterday was my last chemotherapy appointment. After 4 ½ months and 16 infusions, I am finished with the first phase of my breast cancer treatment. For the past week, I have been battling severe, free-floating anxiety, which I now think had as much to do with the anticipation of this new change in my life as it did with all of the life-details to which I was attributing the stress. As mentioned in my last post, reaching this momentous occasion has been bittersweet. (In a much earlier post, I write about the mixed feelings many people experience as and after they finish cancer treatment.) Bittersweet because it means saying good-bye to all of the caretakers I’ve gotten to know at the Cancer Center; good-bye to Maggie’s packages of delight; good-bye to my routine.

But last night I realized that there is something much bigger burning beneath the surface. The end of chemo brings with it yet another significant and in many ways unknown life change, much the same way my cancer diagnosis did. With any significant change, uncertainties abound: What now? And, What do I want now? And, How do I actually make happen what I want now?  The unknown is, in and of itself, often scary (even when it is also exciting).

But it’s more than facing the unknown.

When I was diagnosed with breast cancer, all of the unknowns swirled around inside of me as my life transformed in ways that sent me INWARDS. Into my house, into myself. I was too sick to work, to socialize, to go outdoors.

With the end of chemotherapy, all of the uncertainties are once again swirling, but this time, as life is sending me back OUT. OUT into the world. And despite the fact that there are many ways in which I have always loved going OUT—love socializing, love traveling, love collaborating, love making new connections—going out into the world has also always come with a degree of fear.

Almost every morning, when I bring my 6-year-old Sophie to school (or say good-bye before sending her off with someone else), she clings for one more hug, often her eyes well with tears, she braces herself to leave my side and venture out into the world on her own. Amazingly, she goes; never has she grabbed hold and begged and cried (for which I have the deepest awe and respect). (Thankfully, it only takes her a couple of minutes to feel settled and safe in her classroom.) I understand her lingering completely–which only deepens my respect and awe. As a young child, I also struggled with school mornings—and then as an adult, with work mornings. I have always awoken to those mornings with a sense of loneliness and a touch of fear in my gut. I have always had to brace myself to face the wide and scary world on my own.

I think I am bracing myself now.

As I brace myself, I know that I desperately want to hold onto what I’ve learned these last several months about who I am, who I want to be, how I want to live. And I know it is much harder (at least for me) to stay grounded and true to myself when I also need to navigate the wide world and all of life’s realities.

But perhaps this is the meaning of life. Perhaps we—perhaps I—am here to find my truth, and then find ways to live that truth, not in a bubble, but in the day-to-day, real-life, wide and scary world.

Already I am feeling so much more grounded than I did over the past week. Perhaps it’s the newfound clarity rising to the surface. Perhaps it’s simply getting past the anticipation of the end of chemo and to the actual end of chemo. Whatever the reason, I am relieved and grateful to be more comfortable in my body (that the intense anxiety has eased for now). I am also feeling more excitement than fear (in this moment, at least! who knows what the next moment or tomorrow will bring!) about whatever might come next.

Before I close the door on my chemotherapy, I want to look back and remember and share with you the many wonderful people who took me to, and took care of me, during my 16 infusions.

Jen (on the right), my regular chemo nurse, who, after years as a hospice nurse, knew well how IMG_0420to take care of people in the midst of major life challenges and changes. Over the last several months, I learned about her four children and her police officer husband and her love of reading.

And Joanne (to my left), longtime nurse who then turned massage therapist about 20 years ago, after caring for her 6-year daughter old when she was diagnosed with cancer. (Her daughter is now 28 and healthy as can be.) Most weeks, Joanne would massage my shoulders or my face or twice, my feet, while we slowly got to know about one another’s lives and hopes and fears.

IMG_0518Kayla, who always took my vitals with a smile and brought me a warm blanket and chatted with me about our weekends and our children and made me feel welcome and safe and seen.

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Annie (aka “Borgy”), whom I designated as my god-mother when I was nine (despite the fact that she is Jewish, and I have never been religious); and whom I’ve always referred to as “another mother” to me, since she has known and loved and cared for me since the day I was born. She traveled 2 hours from Hunter Mountain—twice—to take me to chemo (and to take care of me during the aftermath). (Unfortunately, I don’t have any pictures of us during this time, but here’s a picture of her:)

Jenae, soul-friend-extraordinaire, who traveled three hours from Brooklyn to take IMG_3116care of me in the days before my parents arrived. During that time, she took me for my post-chemo fluids and steroids, which was identical to a chemo visit aside from what they were pumping into my veins, so I’m including her here (with a pre-chemo photo of us; she’s on the right).

IMG_0261My parents, Sula (aka “Amma”) and Harvey (aka “Zayde”) who took me to the bulk of my infusions, where we usually talked, sometimes did a bit of reading, very occasionally watched TV when I was too zonked to do anything else, and then toward the end, discovered the joys of travel Scrabble at chemo infusions!

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Maggie, my soul-mate, sister-friend for the last twenty-plus years (and the giver of all those chemo gifts), was usually teaching 2nd grade when I was at chemo, but thankfully had the chance to take me when she was on school break… and then Josh, who was doing a rotation next door, surprised us on his lunch break!

And my other (in addition to Maggie) nearest and dearest Northampton friends (who did so much more these past several months than take me to chemo):

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Hannah Ray! (left) and Keegan (right)

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Angela and Clover (left) and Jen and Nunia (right)

And I have to tuck in Jain here. Even though she never officially tookImage 3me to chemo, she did pop in for visits before and after and in between her midwifery shifts next door. (Again, no chemo picture, but here we are at an American Hustle dress-up party—Jain is the curly red head on the right of me in a wig.)

Letting the Wind Carry Me

In one of my meditations last week, an eagle soared into my view. But as it aimed for the sky, something held its leg. The eagle shook and squirmed, flapped frantic wings. And then suddenly, the “something” let go. First, the eagle soared free, up and up; and then, she simply floated, surrendered, the wind carrying her in all her power and luster.

The message was clear and beautiful and welcome. This is my time to let life carry me. (Where will it take me?) All I need to do is surrender. To let go of the grasping thoughts, the free-floating anxieties, the list of shoulds, the fear of what might happen if—so that I am no longer caught like that eagle’s leg. So that the wind can guide me wherever it is that I am meant to go.

Tomorrow, my mom leaves after living in my home and in my life for three (wonderful) months. Today, and in and out of a restless sleep throughout the night, I felt myself flapping frantic. Grasping to all of the things I don’t want to end (our morning mediations; watching West Wing in the middle of an afternoon). Rolling around in all of the things we could have and should have and oh how I wish we’d done these last months (taken more photos, that Friday evening yoga class). Fearing the long list of things to fear (my first morning alone; the too-quiet daytime hours; solo-parenting with chemo-fatigue strapped to my shoulders).

I could havImage 6e spent all day with my leg, my spirit, caught. And then I remembered my eagle. Let go. Let go. And so this is what I got today: An arm-in-arm walk on the bike path. My first sun in what feels like seasons. Lunch downtown on a Thursday afternoon. A hug in the kitchen. The wind carried me into all these gifts with my mom. In the words of a friend surviving metastatic breast cancer, “It was a good day.”