keeping abreast | keeping a breast

I’m flying back from Edmonton today, over the Canadian Rocky Mountains in a thin aluminum tube in early winter. Naturally, it’s a little turbulent. We bounce and rock, hurtling down in an air pocket. Then we level out while passing through a smooth area. My body relaxes, other passengers laugh and get a refill on their sodas now that they won’t spill everywhere. Only for us to shimmy over another pothole in the air shortly after and begin the cycle over again.

Little ups and downs, successes and challenges, smiles and furrowed brows.

I’ve written about ups and downs in the past.

I had an ah-ha moment regarding turbulence while at work a few weeks ago.

I received an email from someone challenging me on a topic; that gurgled fluttery feeling emerged in my stomach and my ears flushed. It couldn’t have been 10 seconds later, I received the thrilling news that I was accepted to the India volunteer program. A whoosh of excitement and a happy dance followed. And then my computer mouse quit working and smart screen got stuck upside down. And the cat peed on the couch. And I opened the mail and read a thoughtful letter. And on and on. This all happened in about a 3-minute span. And challenges continue in dealing with my spinal issues. Like when I went all the way to UCSF only to find out they referred me into the wrong neuro practice. The next appointment is in 2 months.

Ups and downs. A thousand cuts, a thousand stars.

I (we?) tend to focus on the big ups and downs in life—the job interviews or promotions, health test results, saving enough money to buy that new car (or not). But really, we live in an incredibly volatile world and are facing turbulence constantly. It’s a pretty rare occasion when something goes entirely the way we want, hope, or plan it to go. Yet we think we have so much control.

So what’s the punch line? Those ups and downs, when I get sucked into them and am constantly surfing the waves up and then crashing and getting tossed down, aren’t good for me. Or anyone for that matter. My adrenaline is always on the ready; surely, being in that state for a prolonged time can’t be healthy. I’m not saying that we need to be always on the up, as Bev so eloquently put in this blog: “You mentioned that you are in a ‘valley.’ While that feels deep, dark, lonely, and horrible, it is also a place that we all need to visit at times. The valley is where we get revitalized because the valley is fertile, fervent…a place where lush, green plants grow. We hate to be in the valley of life, but it isn’t the mountain top that gives us the “fertilizer” we need to grow. Be where you are.”

What I am saying is that, with both the turbulence and the calm, I’m working on just noticing them. Appreciating them for what they are. And trying not to get sucked up into them too much. And then if and when the world all coalesces to work the way I want, hope or plan it to, to really be grateful.

Being present in the present. Because if I’m present in the present, the present is infinite.

That’s probably at the core of all this mindfulness work I’ve been plunging into. I could read every book on the topic without effect until I internalized it in my own time.

Perhaps Rilke meant the same thing when he said this: “…You must not be frightened if a sadness rises up before you larger than any you have ever seen; if a restiveness, like light and cloudshadows, passes over your hands and over all you do. You must think that something is happening with you, that life has not forgotten you, that it holds you in its hand; it will not let you fall. Why do you want to shut out of your life any uneasiness, any miseries, or any depressions? For after all, you do not know what work these conditions are doing inside you.”  

And Thich Nhat Hanh similarly put it this way: “The tendency to run away from suffering is there in every one of us. We think that by seeking pleasure we’ll avoid suffering. But this doesn’t work. It stunts our growth and our happiness. Happiness isn’t possible without understanding, compassion, and love. And love is not possible if we don’t understand our suffering and the other person’s suffering.”

Ahhhh. Deep breath.

I think I’m behind on the continued baby boom in our life. Welcome to the world Patrick with Eric and Mary; Cian to Brian and Lillian; Declan to Susan and Joe; Anthony to Brooke and Chris; Sol to Paul and Corrie; and Genevieve to Brian and Liz. And, today is Mike’s birthday…everyone sing him happy birthday together! We’re going out for a nice steak dinner and banana cream pie, so his dream has come true.

xoxo

meaghan

GRATITUDE, excerpt by david whyte.

“Gratitude is not a passive response to something we have been given, gratitude arises from paying attention, from being awake in the presence of everything that lives within and without us. Gratitude is not necessarily something that is shown after the event, it is the deep, a-priori state of attention that shows we understand and are equal to the gifted nature of life.

Gratitude is the understanding that many millions of things come together and live together and mesh together and breathe together in order for us to take even one more breath of air, that the underlying gift of life and incarnation as a living, participating human being is a privilege; that we are miraculously, part of something, rather than nothing. Even if that something is temporarily pain or despair, we inhabit a living world, with real faces, real voices, laughter, the color blue, the green of the fields, the freshness of a cold wind, or the tawny hue of a winter landscape.”

holy cow. i’m full of this kind of gratitude. you have activated once again to help me reach a goal. thank you for your support–both financial and in kind—to help me raise $5000 to volunteer in india. because of you, it’s happened! and, it’s incredible! my heart is just…so full. 

thank you all and much much love and…gratitude,
meaghan

As promised, I have some exciting news…Check it out here! I’ve been chosen to volunteer with 11 other cancer survivors in India! I have to raise $5000 by December 31! I need your help in doing that! Lots of exclamation points!!!

Throughout my cancer journey, I’ve written about being in a fog, commenting that I “have to figure out who I am, what I am, where I find joy again…” But, how? How will my heart light up again? How can I step outside myself and shake it up?

Enter A Fresh Chapter. They reminded me that one of the ways out of this tunnel is finding a way to give back. To recognize that we’re all human and all experience challenges. And to do so in a place as rich, multi-layered, vibrant, and kaleidoscopic as India.

We’ll be volunteering for several local nonprofits around New Delhi—from teaching English to school children like these nuggets to washing floors at Mother Teresa’s Home For the Dying and Destitute. We’ll also be cancer ambassadors of sorts, providing informed and compassionate emotional care to cancer patients with the CanSupport organization, helping to navigate a culture where cancer is often veiled in stigma and shame. And, all of this volunteering is part of an established chain of volunteers such that the work continues long after we leave—an aspect of sustainability that I value.

India won’t provide me with all the answers. It will, however, provide an education, an inspiration, and an opportunity to help others. It will remind me of what is possible in my unfolding life story. This, I have to gain. And to lose are the expectations of how things “should be” and the fog that lingers around and within me.

How will I use the funds that you contribute here? I’ll use them for lodging, meals, transportation between sites, and in-country hosts and facilitators.

If you donate, I promise to send you a postcard from India! And, I’ll also challenge myself by doing 30 minutes of yoga a day in the push to the December 31 deadline (and hopefully keep that habit going afterwards! It might sound minimal, but me keeping that promise to you will be huge for me).

When you contribute, your funds are tax deductible. Foundation for a Fresh Chapter is a Canadian not for profit with 501(c)3 status in the US thanks to their US-based fiscal sponsor, Social & Environmental Entrepreneurs (SEE) (Tax ID 95-4116679). As well, if your employer has a matching gifts program, please consider submitting a match in support of Foundation for a Fresh Chapter.

So there…raising $5000 in just over a month is no small feat. Living through cancer is no small feat. Breaking open my heart to volunteer in India will be no small feat.

To kick this off, I leave you with one of my favorite quotes from Mother Teresa—it captures where I want to be.  Love and gratitude to you all for any donation you’re able to make, big and small, and any way you can pass along my request to your networks. xoxo

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.

Life is life, fight for it.

I’m sitting outside of El Rio in the Mission doing the first Spill and Chill, a BAYS writing session in honor of Erin. We’re compiling stories into a sequel entitled “Aftermath.” All of us have so many stories of the aftermath of cancer—stitching our broken and scarred bodies back into a whole again, reconstructing our identities, confronting and denying and accepting death, seeking answers we may never find. The narrative of cancer is a long one. Some argue that the story really begins the day after surgery removes the tumor or chemo ends.

You’ll all familiar with my version of aftermath. The story still goes that I have not had cancer resurface in my spine.

After the fiasco with the MRI and then the ensuing PET/CT, my oncologist still wasn’t satisfied with the inability to diagnose my back pain and numbness, so she requested a spinal CT. I glossed over her concern, partly because I couldn’t deal with the alternative theory that these prior scans were missing something. When calling to make the CT appointment, I was classified as an “urgent”case, so they got me in less than 24 hours later. Cut to me:  getting an IV, passing out, and wimpering slightly in the dressing room afterwards. I don’t often have pity parties but that day called for it.

I was supposed to get the CT results within 2-4 hours of my test. The Jeopardy gameshow tune plunked around in my head…for 4 more days! My oncologist was out of town and no one else could deliver the results to me. Of course, my mind shook, rattled and rolled in all different directions. Those boxes I talked about in the last blog post came in handy.

The diagnosis is spinal stenosis. Yes, I know it’s super common and some people don’t have symptoms ever. BUT…why do I have this now? Why do I have what my 92-year old grandma had? My oncologist’s answer: it’slikely related to everything that you’ve been through. Those drugs and surgeries that saved my life are also fucking up my life. More specifically, the hormone suppression shot and pill that I take have likely impacted my bone density. The surgery that removed part of my back muscle likely caused me to develop muscular-skeletal issues.

Excuse me while I scream.

I know, I’m alive, generally healthy, yadda yadda yadda. I get it. But, Come. On.

I still have to go forward with both a neuro and an ortho consult to understand what’s happening, although I don’t particularly understand what could be happening beyond the current diagnosis. Again, boxes. The neuro consult will include sticking needles into my arm—although not in my right arm though to avoid the enhanced risk of getting lymphedema. It’s hard to keep all of this straight, and I get frustrated that I have to keep this straight.

So, I sit here at El Rio and sip a coldy and write in a circle of women who are living the aftermath with me.

And life moves forward, time passes. I go to work, finish my grants for 2014, make dinner, pull weeds, laugh with friends, take in art, play fetch with Whiz, support other women in BAYS, organize pictures from fall adventures and dream up new places to go. Speaking of, I might have some amazing news to share with you early next week. More on that soon…a teaser of sorts.

xoxo

meaghan

i look around our house and we have a lot of boxes. a beautifully carved reclaimed wooden box that holds our cozy blankets. a clear plastic walgreens box that stores my pills. a dinged up cardboard box that contains the latest shipment of a bright and peppery pinot noir. a colorfully painted tin box from taiwan full of loose leaf green tea. my grandpa’s old cigar box that shrouds dusty photographs and sweet mementos from him and my grandma’s time in san francisco.

boxes hold elements of surprise and can be nostalgic of happy times. a birthday or christmas, perhaps.
but, these boxes conceal something. tucking it away to be pulled out at a later date. to be kept safely. or to be forgotten.

one of my coping mechanisms incorporates these boxes–myriad shapes, sizes and colors. when i’m stressed or something is happening over which i have no control, i pull out these boxes, in my mind at least. and place the worry in them. i close the lid tight and put the box back on the shelf. maybe i’ll never open it again. or maybe i’ll open it in 5 minutes.

it’s an exercise in self-constraint.

i’ve needed those boxes a lot lately.

some of you may recall me mentioning my back pain in early summer. it’s continued to worsen with recent numbness radiating to my arms, hands and feet at times. my oncologist saw me immediately with this new development and ordered an MRI.

i didn’t want to alarm anyone, so i only told a few co-workers. then i told a friend. and finally, mike. we pretended like it wasn’t a big deal. maybe a slipped disc or pinched nerve, or the onset of osteoporosis in my spine because of my drug regime.

last monday, i headed in for the MRI, to be a 90-minute scan while laying perfectly still. not the best start to the week. i wanted to take ativan to get through it but had to drive to the office to give a presentation right afterwards…so, falling asleep on the interstate or drooling in front of the board of directors at work seemed ruinous in different ways.

i got changed into the fancy hospital pajamas and the tech, sylvio, got my IV started. as i was laying down on the MRI table, he paused when reviewing my chart and said, “do you have a tissue expander?” me, “yes.” him, “you need to leave this room immediately!” me, “shit!” 

because the magnets are so incredibly strong in an MRI, a patient cannot have any metal on or in her body. it could get ripped out at worst, super hot at best, and shift around to rearrange some muscles and tissues in between. because of my surgical complications, i still have a metal piece in my chest. but my doctor and i *forgot* about this when we proceeded with the MRI.

zoinks.

cut to thursday and the mach 10 escalation, with a PET/CT as the next best diagnostic tool to determine if my cancer is hanging out in my spine. being back in that room, on that table in particular…i had to really pull out the boxes and put all my post-traumatic stressors and fears into them, slam them shut, put a lot of bricks on the boxes, and throw a blanket over them to avoid their presence. i was exhausted afterwards. and radioactive too, not to hold small children.

i sat through erin’s san francisco memorial last weekend, wondering to myself, why not me? why her? and thinking that maybe my ticket was being pulled and i’d soon be asking why me? boxes, boxes, boxes.

the PET/CT results came back with no cancer. that’s good news if you’re just tuning in. so, the worst case scenario didn’t happen to me, not now at least. i could opt to do more brain scans, but my oncologist thinks it’s very unlikely that there is cancer in my brain given the lack of spinal engagement. 

we’re still missing a diagnosis to the problem though, so i’ll consult a neurologist next week. and in the meantime, i’ll work to strengthen my core (seriously), do acupuncture and PT to help with the symptoms.

deep breath. or kick something. your call. 

all of this reminds me of vulnerability. we’re all vulnerable. just because i feel good today doesn’t mean it’s guaranteed for tomorrow.

an excerpt of this poem by david whyte on vulnerability, delivered randomly to me the day of my PET/CT, says it all:  “vulnerability…is not a weakness, a passing indisposition, or something we can arrange to do without, vulnerability is not a choice, vulnerability is the underlying, ever present and abiding under-current of our natural state. To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to become something we are not and most especially, to close off our understanding of the grief of others. More seriously, in refusing …our vulnerability we refuse the help needed at every turn of our existence and immobilize the essential, tidal and conversational foundations of our identity.”

boxes. vulnerability. boxes.

talk soon –

xom

i could write you a story about how amazing my life has been recently, how high the highs have felt, the adventures and new friends. but i can’t right now. 

i’m sitting in a valley. 

erin died today. her obituary says it all, and i have no doubt she had a hand in writing it. she is a beloved friend, a wiser older sister to many, intellectual, BAYS president, writer and editor of the BAYS Anthology, mother of 2 young boys, and wife. she is graceful, radiant, fierce, and warm, with no lack of humor or capacity to give to others. and she is gone. 

i feel like the world has been cheated, i’ve been cheated, from having her be a present force for good on this planet. 

i feel anger. more anger than i felt when i was diagnosed. i hate cancer, hate hate hate it.

i feel denial. this simply cannot be happening. not erin, no, not erin.

i also feel guilty. why am i here and she’s not? why am i sitting on the same couch that we snuggled on a few months ago, laughing and comparing surgical scars, and she’s not?

and, i feel conflicted. i’ve known erin for about 2 years, but didn’t know her like her best, lifelong friends knew her.

so while it’s valid for me to feel what i feel, it doesn’t feel completely right to feel it.

oh, and there is the numbness too.

this summer both with the BAYS board and on our own, erin and i talked about getting a project off the ground for stage IV BAYS women with young children. it would be a chance to catalogue their stories, things they want to share with their children if the women die before their kids grow up. we didn’t get it off the ground yet. my heart breaks. 
perhaps helping prepare us for her own transition, erin wrote a beautiful blog piece last year about dying. it may give you a further insight into erin and how she approached all aspects of life. and in an email exchange last month, she weighed in on BAYS programming around hospice and dying at home…all before she had an inkling of what september would hold.

one of erin’s friends has been collecting stories about erin. while i shared some, what i most wanted to say to erin’s children about her is this: erin, you make the world a better place. you make people be better version of themselves. you make your friends think that they can do anything. you share and give love freely. you cook amazingly and know your wine even better so as to make every meal with you memorable. you laugh beautifully, with sass and sarcasm and a big heart. and, your eyes sparkle.

earlier today, my friend jen pointed me to this quote by blogger glennon at momastery: “Life is brutal. But it’s also beautiful. Brutiful, I call it. Life’s brutal and beautiful are woven together so tightly that they can’t be separated.” this is where i’m at. 

erin, and all the BAYS women who have gone before her, did not lose their battle with cancer. they went through difficult treatments, ate right, prayed and meditated hard. saying that she lost her battle implies that she didn’t fight hard enough.

the more accurate description is that erin lived and loved fully. she did not lose. and as her obituary and dear friends have said: may her memory be a blessing.

goodbye for now, my red-headed astral twin.

xom

i’m back from a self-imposed blog break. to be out living it rather than writing or reflecting on it. sometimes it’s ok not  to process, not to dwell. some circles might call it denial or avoidance. but i like to think of it as…ok, there’s no way around it. it’s pure avoidance. however, the harder i push to avoid it, the harder it pushes back on me, seeping into the cracks and fissures of my life.  

it’s kind of like i’m riding an elevator. i’m going down, descending into the abyss of my mind (not always a nice place) and then i have to rapidly ascend again to regain composure and a sense of control. and back and forth, up and down.

no matter if i’m out living it or curled up in a ball on the couch, i think about cancer every waking minute. it takes approximately 2.5 seconds after i wake up to remember it all. and 2.6 seconds after i wake up to get sad, pissed, achey and have a hot flash. i’ve also been freaking out because of a lot of bone pain in my lower back and left hand, on top of a lot of weight gain and insatiable thirst and appetite. what does it all mean, if anything? 

it doesn’t mean that my life isn’t good. this summer has been particularly sweet. i restarted my MBA in nova scotia, went on some fantastic work trips to canada, belgium and norway, spent quality time with our families on florida’s white sand beaches and niagra fall’s maid of the mist, hugged my dad, rode roller coasters, started a massive yard renovation, made homemade pies after picking apples, rhubarb and strawberries, and tried to catch up with as many friends as the day is long.  

on june 6, i passed my 1-year cancer-free date. 14 more years to go before i get the “cure” card. on august 7, i passed my 2-year cancerversary. that’s 2 years since diagnosis. 2 long/short, slow/fast, horrible/incredible years.
what i really wanted to share with you this week is the butterflies in my stomach, as i prepare to go on a whitewater kayaking trip in wyoming with the nonprofit first descents, a group that provides free outdoor adventure trips to young adults living with and through cancer. their motto is: out living it.  which is a beautiful double entendre–out living life, and out living cancer. it’s a chance to think about something beyond cancer, to reunite with nature, to reclaim my body and push it to new limits, and to meet others who have walked in my shoes.

this video trailer gives you a sense of the transformative experience these camps have on participants. i love one of the comments in the video: “do i get out? or do i get back in?” that’s the ride i take every day, elevator going down and up.

i contributed a recipe for a first descents fundraiser cookbook that you can purchase here if you want to freshen up your recipe rotation. it’s super tasty, i promise.

so, you’ll hear from me again–i hope!–on the other side of camp. until then, get out and live it yourself:)

xom

during some recent interactions, i’ve received a lot of questions that essentially boil down to: “you’re doing good, right?” or maybe that’s less a question and more a declarative statement?  either way, while i believe it truly comes from a caring, hopeful place, it doesn’t feel as though there is room for a negative answer. this line of questioning can leave me feeling minimized and close the door on an authentic interaction. sure, talking about cancer and health is not fun or desirable for me or you, and it can be more pleasurable to keep the conversation light at 20,000 feet. 

but the answer to the question is: it’s complicated. i’m doing good and bad in the same breath. and then amazing and gloomy in the next breath. and then exhilarated and dejected after that. and so on…which i imagine if you’re being honest with yourself, you have the same feelings breath to breath. it’s called being a normal human being.

when i don’t post for awhile, i hear from you with 2 possible assumptions: things have gone terribly awry so that i don’t have time to post, or i’m having so much fun that i don’t have time to post.  while it’s recently skewing to the latter, it’s kind of in no man’s land right now.

because the realization has sunk in that this is a long journey, long like life long, i lately been frustrated and decided to avoid making space to reflect and write on it. i simultaneously feel like i’m over it all, like bored and exhausted with the cancer and healing and death talk, and also still in the middle of it all, like eating it and breathing it and crying over it and sighing over it. 

after my treatments and then 3 surgeries in 2 months, i’m on a slow climb back to having energy. i harken back to the spoon theory I shared awhile back. 

this hasn’t stopped me from jumping back into incredibly sweet adventures for work and play and to put my life back into fast gear, because i want to make up for lost time. but (a big BUT), i struggle to figure out how to do all this in such a way that i don’t boomerang back to an infection and exhaustion. i can no longer just “push through.” i’m no longer a night owl. i can’t drive long distances. i can’t do push-ups or lift my carry-on into the overhead. i really can’t drink a bottle of wine in one sitting (although that was pretty much always AMA).

of course i can sit here alive and type to you.  

but, it’s complicated.

so that’s my answer to that question / declarative statement. 

on the physical side, my back skin continues to take to my breast skin, and the incisions are healing well now. i have to laugh (cry? cringe?) at the surgeon’s continued surprise with how good it looks. i’m getting the tissue expander filled slowly, like 25cc every week or few weeks. the rest of my breast skin remains extremely thin, which is normal from radiation but still cause for concern in the reconstruction process and reason to go slow and not count the chickens before they hatch. i’ve been swimming a bit, and the remaining part of my latissimus muscle seems to be working well enough.

we saw my oncologist and continue to have intense conversations about starting new drugs and stopping zoladex shots. it’s a tightrope walk with ramifications either way. we also discussed my recent forgetfulness with her (er, mike brought it up because i forgot to). she asked me some customary questions, like: is your vision blurred? are you dizzy? do you have any headaches or other head pains? at once i realized what she was doing—making sure my memory issues are limited to things like chemo brain and menopause, rather than brain metastasis.  good news is that i don’t have any of those other symptoms, so we’re chalking my memory issues up to chemo brain and menopause. i’m sorry in advance.

in other news, happy father’s day, especially to those new dads out there. i really love being able to share all the stork deliveries to friends and family across the planet. In a recent baby boom: congratulations to claire and mike with sebastian; megan and scott (and grandma Cherie!) with max; tony and lane with samantha; bridget and steve with lena; tiffany and brad with rowan; gabrielle and chase with lula (who holds a special place for me because she’s currently a ginger like grandma GG and named after my great aunt!).

ok, back to my complicated life and you to yours.  talk to you soon and until then, much love –

xoxo

m

PS the photo is of a cake my nieces decorated this weekend for the spring birthdays in our family and for father’s day. it’s also complicated.