Wednesday, December 19, 2012

Being love when all the world's gone mad

I took a little break from writing last week. I needed a little time to go inside and think about all that was going on around me. So many people I meet are feeling hollowed out right now. They stare at me, wide-eyed and stunned, asking, “What is happening to our world?” 

Here, in the midst of what is a holy time, a time of family and friends and faith, of imagining and dreaming 2013 into being, it feels as if the switch keeps being thrown. One moment, pure joy and laughter. The next, the specter of war looming in yet another faraway country. A typhoon washing away thousands of lives. Shooting and deaths in a mall where I used to mindlessly shop and dine. A mass killing of children in Connecticut and a mass wounding of children in China. Incomprehensible. Sickening. Beyond tragic.

All our energy follows as we follow such events. So much anger. So much confusion. So much fear. So much grief. It is as if a tsunami of sorrow-filled reality has rolled across our planet and hit us all smack in the face, and we are afloat in its receding waters, which yet never seem to fully recede. 

It raises so many questions.

What can I DO? How do I BE with all of this? 

I now live daily with a finer awareness of the shadow of death. While I have always known our time was precious and short, and done my best to live life to its fullest, I understand now with a renewed precision that life and death are with me, in every breath, every day. It is no more or less true than it was before. It’s just as if it’s been highlighted in neon letters. I don’t choose to dwell on it in a moribund way. Instead, I accept this reality of our mortal coil, and see the opportunity to live even one moment of one day as an incredible gift for which I am incredibly grateful. And times like this make that awareness razor-sharp, that gratitude even deeper.

As I think about all these recent events, I choose to stay focused on one thing: creating the world as I would see it evolve around me. A world where we love each other, respect one another, care for each other, as one. A world where each of us is keenly aware of and acting from our infinite capacity to be kind and gentle, to ourselves and to everyone we meet. A world of peace. A world where we no longer feel completely at a loss in the wake of tragedy with no clue what to say other than, “I’m so, so sorry,” and instead naturally begin to find our way to our authentic connection, easily uttering what is really s for us, “I am moved with you. I grieve with you. I am hurting, as you are hurting. I am at your side in this suffering, and together, we will walk through this.” A world where we recognize that we are a blessing to one another, no matter our religion or faith, or lack thereof, and as such, can make our words and gestures to others reflect the blessing we are. A world where we all can simply be the presence of love in every moment of every day. 

To quote John Lennon, “You may say I’m a dreamer. But, I’m not the only one.”

It is critical to realize that what we think about, what we believe, we are dreaming into being. We set it in motion with every whisper of a thought, every breath of a wondering. We are powerful co-creators of this reality play.

So, my wish during what often feel like such strange and uncertain times is that we will all see these are also wonderful and amazing times. Yes, there is tragedy, but too, there are such depths of hope and love. Such outpourings of desire to connect and support and love one another through it all. 

My wish is that we will lean into this. That we will take it upon ourselves to dream the world into being as we would have it be. My urging is that we honor all that we feel, engage with it as we feel it, and then actively allow the thought forms that no longer serve us, like despair and fear, to take a backseat to those which will serve us better now. 

Life is so short. Live every moment as you would have it be in your best possible dreaming. Come from a place of love and courage. Make every moment a little brighter and better for yourself and for those you come in contact with. You have the capacity to create miracles every day. You have the capacity to be a blessing upon every person you meet with just a kind word and a smile. Reach into your infinite soul, take a small pull on your wellspring of wisdom and compassion, and walk in light. For in doing so, you create an umbrella of love that will be a shelter to all those around you during the stormy times, warming their hearts and minds, and relieving their suffering. Let it be done with ease. Do not make it hard. Just be who you naturally are, allow your authentic self to shine through with love and compassion. You may be surprised at how gently and beautifully all that has seemed so impossible will begin to fall into place.

I wish you all so much joy, love and peace as the year comes to a close. 

Monday, December 10, 2012

'Tis the Season: 16 Holiday Gift Ideas for Caregivers and Survivors

People are so compassionate and caring by nature. It’s incredible. One of the very first things I hear from everyone who finds out about this little adventure we’re on is, “Oh my gosh, I just don’t know what to do or say or how to help. Tell me what to do! I want to do something for you guys!” It blows my mind open every time that they care so much.

The first and most important answer is just that by putting your healing, positive thoughts in motion, and sending those good and positive healing energy on a daily basis, you are doing the most important thing you can do for survivors and caregivers. My advice is to do that first, and keep doing it, every single day as part of your daily practice. Don’t waste any time on the bad thoughts. Think only the good ones, and keep them flowing on. And, when you can, send a note along once in awhile to let them know you’re still doing it. Healing thoughts and prayers are the most powerful juju you can send into the universe for anyone.

Now, with the holidays upon us, I know we’re all also looking for ideas to do something meaningful and show we care about the people we love. And, for those of us recently brought into the can’t-sir tribe, it’s admittedly a bit of a strange time. Many of the scents and tastes we love no longer appeal. Or, we just don’t want to ruin them forever, so we’re abstaining (yes, chocolate, I’m talking to you!) Some activities we love to do, but, we simply can’t do right now, due to where we're at in our healing journey. And, our caregivers, well, goodness, I think the best way to capture that would simply be to say their worlds are pretty much completely upside-down!

So, I’ve been thinking about some of different types of gifts to get for patients with triple negative breast cancer, and for those who care for them. If you are looking for some tangible gifts, I hope these give you a few unique ideas.

(Note: I’ve made some vendor recommendations to get you started, but please know, I believe in shopping local and making as much of your own stuff as possible, so if you’re into that as well, I hope you’ll just use these as ideas to get you going in that direction!)

#1 -- Detox Bath Basket: A detox bath is an amazing way to relax for both survivors and caregivers. Go back to basics, with ingredients like Epsom salts, baking soda and Vitamin E Oil. You might even include a bottle or two of electrolyte enhanced water in good non-toxic bottles, or some detoxifying tea. Strong scents and highly perfumed goodies are typically too overwhelming during treatment (plus, highly toxic in their own right!), so try to think organic and natural and don’t go in for anything super flowery or fruity unless you’ve talked with your person and know they can stand it right now. Here’s a good basic tutorial if you’ve never prepared a detox bath before to give you a sense.

#2 -- Juice and Raw Food Cleanses: Past making my own fresh juices, one of my favorite juice cleanses is from Cooler Cleanse. There are many great companies out there, and depending on your area, you may have a local provider you can go through to ensure the freshest juice possible. Juice and raw food cleanses don’t need to only be used as meal replacements, and can also be added into a day, week or ongoing plan for healthy eating. I love my fresh raw juices and foods every day, and so does my husband, but making any food can be a lot of work, especially on high-fatigue days. Sending the gift of juice in a box is like ensuring both caregiver and patient will have all their vitamins and minerals for the day, week or month! Yay for vibrant health! (Note: You may want to check in to confirm your person is allowed raw food and raw juice and adjust accordingly. Some can’t-sir diets are very strict and don’t allow raw foods.)

#3 -- Headscarves: Beaubeau scarves are like the Cadillacs of chemo scarves, because there’s basically nothing you need to do but put them on and go to have them look beautiful, and they come in so many different and lovely choices. I have to admit to coveting them for the last couple of months. I think they really pay off in terms of form and functionality. Of course, there is no end to other scarves you can pick up. Check out my headscarf post for ideas on sizes, shapes and fabrics. Trust me, you can never have too many chic head coverings! Especially in winter.

From Healing Threads
#4 -- Arm Covers for Lympedema Survivors and Pict Line Wearers: If your survivor has a pict line or is living with lymphedema, Lymphedivas and Sleeksleeves offer some beautiful and fashionable coverings that can be worn during the healing journey. They come in all kinds of cool fabrics and patterns, sizes and shape, perfect for accessorizing. They’re great for increasing wardrobe flexibility and making it easier to stay moving and active -- so important for all of our can’t-sir luchadors out there!

#5 -- Recovery and Outpatient Wear: It is super hard to find specific, comfy clothing for use during procedures and treatment. I think Healing Threads offers some of the better options in recovery wear for those coming through mastectomy, designed with comfort and discretion in mind. Though I don't own one yet, I particularly like their treatment robes, since survivors get to go in for so many outpatient procedures. Putting on one of these would be so much better than the ubiquitous paper cape!

#6 -- V-neck Tops for Port Access: I’ve had trouble finding port-specific tops that are also also fashionable, so I just choose to find my own v-neck tops and throw a cardigan over them. I’ve found that’s the easiest and warmest solution so far, and it means I don’t end up wearing a track-suit. (No offense, track suit wearers. I just can't pull it off!) The best tops don’t have too deep of a V, but are stretchy and loose enough the port can be easily accessed. These tops from Victoria’s Secret are my favorite right now, though they’re a little more slim fitting than I like, so I buy one size up. But the price is right, the material is soft, and they're a little more fashionable than a regular square t-shirt.

Sorry. Couldn't resist.
#7 -- Stretchy Pants: Nacho Libre had it right! We all need our own pair of stretchy pants, caregivers and survivors alike. My latest discovery is cashmere infused pants. I bought these bell-bottom pants, and they are one of the best gifts I ever gave myself because they are so warm and soft. Leggings and stretch pants also work great for treatment and procedure days -- like MRIs, where you can’t wear anything with metal fasteners (so nice to get to keep your pants ON for a change!) -- and they are particularly nice for anyone undergoing treatment during a cool time of year. So comfy!

#8 -- Fuzzy Blankets: One of the best gifts I got from one of my amazing posse was this sherpa blanket from Target. My hubs and I loved it so much (as did the cat and the dog), we went out and bought a second one! Now one goes with me to chemo and gets immediately washed upon returning home, and we have a second one ready to go for post-chemo snuggles on the couch. The small size is really great for portability and sitting in the chemo chair for hours, and soft and easily washable is where it’s at for treatment blanky options!

#9 -- Comfy PJs and Slippers: Some of the best gifts I received from my posse have come in the form of PJs and slippers. You can’t really ever have too many during the healing journey! My work team even sent me an awesome surprise of PJs in a box from Pajamagram, which was as fun to open as it was to start wearing. (Just be sure to remove all those little silica gel packets before you put them in the washer and dryer. Oops!) I recommend warm, long, oversized soft pants and roomy tops, and big, easy to squeeze into slippers or booties. Tight stuff is not our friend right now. But you’ll know your survivor best. What a great gift for caregivers, too, who likely find themselves at home lounging more than usual.

One of the only nonprofits
focused on Triple Neg.
#10 -- Donation to Charity: Making a gift to a great cancer charity that is working for survivors goes a long way. I recommend thinking first about small and local organizations like The Lydia Project, who are actively doing work for survivors every day, or something specific to the type of can’t-sir your person has, like The Triple Negative Breast Cancer Foundation. I know the "big pink" organizations are the easiest, but they really are so big, your donation may not be as impactful as it can be for small charities, so it's just something to think about. Here are some more charities to consider, large and small, if you need some ideas. The main thing here, I think, is to try to find a way to make it personal and meaningful. I received a short note telling me some background about a donation that was recently made in my honor, and the story absolutely made me cry. It was so lovely to understand why the donation was important to my posse, and to see how much bigger the work we're doing together is. I love that!

#11 -- Journal Kit: How great is it to receive a full journal kit complete with a beautiful new book, a nice pen, even fun things like tape flags and stickers and cute post-it notes?! I admit, I'm obsessed, but I think it’s just the best, and again, great for caregivers and survivors alike. Personally I love the idea of this one from Urban Outfitters, even if it would be for dreaming and planning post-treatment!  And check out this one, which has a lovely uplifting theme and great thoughtstarters! I also like this one, because 5-year anniversaries are so important. And, this format keeps it simple. Jot down some thought starters of your own, add some handwritten journal prompts and a few words of encouragement in, and it’s even better. Again, a great gift for survivors as well as caregivers.

#12 -- eReader and iTunes Gift Cards: The miracles of technology! It probably goes without saying, but having immediate access to new books and media is a real gift for caregivers and survivors who spend hours at a time waiting around. Never having to go to the bookstore is even better now than it was before!

Ooh, crafting through chemo.
Some of the blurry cards I made this year.
#13 -- Craft Subscription Box: I’m a big believer in art and craft as healing practices. But I never knew crafts can be delivered right to your doorstep! Now that I've learned this, I may never go back. There are many great companies out there that offer monthly craft subscription delivery services for different kinds of crafts, and they include everything you need to do a project from start to finish. Check out Whimseybox for starters, or google “craft subscription box” for more ideas. If monthly is too much, then hit up your local craft store and make your own! Just be sure to give the recipient the full works, to make it easy to get from start to finish for caregivers and survivors. There's almost nothing more depressing than having to get dressed to go to the craft store for one last piece of stick 'um at 7pm.

#14 -- Raw Food Snack Box: I also only recently discovered that there are companies offering regular delivery of raw snacks. What an awesome addition! Find one you like and send an array of delicious, nutritious food that can be enjoyed on the go by survivors and caregivers. Perfect for carrying along to treatments and long appointment days! Healthy Surprise does a pure “snack box”, and Rawvolution is one company that does both whole meals and snacks. (Again, for any raw foodstuffs, just make sure your people are okay to eat raw as part of their diet.)

My head, post-henna crown.
#15 -- Private Henna Session: After my experience receiving a henna blessing, I really feel that henna heals! And even if your survivor or caregiver doesn’t need or want a crown, henna placed on other parts of the body is an equally healing and nurturing experience. Find a local henna artist in your area and line up a private one-hour session to relax and enjoy feeling pampered and beautiful. You may also be able to get a referral in your area through Henna Heals, a Canada-based group who are doing a lot to bring Henna healing to the forefront. Their Facebook page is a great place to start.

#16 -- Reiki Sessions: Not surprisingly. as a Reiki Master Teacher myself, I’m a huge advocate of Reiki for stress relief, relaxation, and healing. In addition to self-treatment, I now go every other week myself to see my Reiki Master Teacher, Denise Sheehan, of Sage Spirit Coaching and Reiki, as part of my can't-sir healing journey. I believe in it so strongly for can’t-sir thrivers and caregivers because of its non-invasive, through-healing nature and detoxifying energy. Unlike other therapies, Reiki can be done hands-on or hands-off, and does not require manual manipulation of the body, so it can be enjoyed as a pure, relaxing experience even if the recipient is achy and sore. I always leave feeling energized and ready for my day. The best way to find a local practitioner in the area is through word of mouth at spas and through other holistic healers, or do a search on Google. Some practicitioners are listed on at the International Center for Reiki training, so that’s also a good place to start if you need to find some resources in your local area.

Got a great gift idea for caregivers and survivors? Please share it in the comments. I'd love to hear your thoughts.

Friday, December 7, 2012

Healing Beyond Triple Negative Breast Cancer: My Henna Crown

Today marks the beginning of the Hennaissance. 

That’s right, with an “H”.

If you’ve been following along, then you already know that I shaved my hair off and started rockin' the wigs and scarves awhile ago in anticipation of losing it all during my A/C-T chemo. Taking control over my own head was a major boost for me, and I haven’t been sorry for one minute that I did it. I love how I look without hair, and I love how fun it is doing my makeup and find creative ways to cover up with scarves and hats on these cold winter days. I’m in love with my bald head, and I am still so glad I took this step, even though, now two treatments in, my hair still hasn’t fallen out completely as promised! 

Today, I am so jazzed to have an even more incredible opportunity to stand in my power in a new way: I’ll be receiving a henna crown from Kimberly Allcock of Henna Blessings here in Reno.

Shaving my head was very much a forward movement. It was me taking a warrior-stance, putting my fists up for an uppercut, and making a declaration to cancer that no matter how much cutting and prodding and poking I might need to deal with to beat this thing, I wasn’t going to let it back me into any corners. I see the creation and receiving of this henna crown as its corollary, the restive movement where, still in warrior-stance, open for business but not actively punching away at anything, I may take a moment to receive a blessing, and to celebrate and honor my healing and the victories of the journey to date. 

Tomorrow marks the two-month anniversary of the day I received the phone call (from a well-meaning but anonymous radiologist who couldn’t even pronounce my name) that my tumor biopsies had come back with cancer, and weren’t just the benign lumpy-bumpies we’d hoped and assumed they’d be. 

In that time, I have already learned so much about myself. I have healed so much of myself. I have been awed by how miraculously my body repairs itself from invasive procedures like biopsies, injections, surgical incisions and dose-dense chemotherapy. And, I have been amazed by how my mind and spirit are healing through practices like exquisite self-care, profound gratitude, active happiness, Reiki, crystal and shamanic healing. 

I believe that blessings are a sacred transference of energy which help us grow in consciousness. I believe they are most effective when they are actively received. I believe that blessings come from all over, not just from ordained clergy or holy people. I believe they come to us directly from Nature, from Source, from God, from any number of places in our Universe, and that they may also be co-created by individuals working in energetic resonance to create a shift. 

So, you can imagine my excitement, since I believe that today I have that type of co-creation opportunity: to work with an artist to craft something that is more than just a design, and, is in fact an energetic vessel for transformation. Art, as anyone who has ever looked upon something and felt it move them can recognize, is in itself is a blessing. The co-creation and craft of art imbued with energetic meaning offers some of the most powerful blessing work I have ever seen. 

My intention today is to be both the creator and recipient of a blessing designed specifically for my own healing and transformation. I will channel Reiki while Kimberly works her magic. I will do this as a form of healing, and as a way to celebrate all that I have come through already, and all that I have learned. To honor the journey I am on, recognizing I am already in perfect health. To welcome into my consciousness the reality of what it truly means to be living beyond triple negative breast cancer, and standing in my power as a survivor and thriver.  

The Henna crown is done, the blessing complete... so now... here are some early reveal shots from Henna Blessings’ Facebook page. This is with the paste still on. I’ll post some more shots in the future with the paste off, so you can see how it turns out!

For me, the symbolism of this blessing was just perfectly echoed in the design Kimberly created. Flowers for transformation, joy and happiness. Vines, for vitality, perseverance and growth. Paisley and ripples for luck and water, renewing life. 

This beautiful blessing reminds me to stay present to what is true: All is Well.

Thursday, December 6, 2012

Feeling My Way Into New Goals with Soul: Putting "The Desire Map" to Work

As someone who's recently become extremely obsessed with looking at and recording how I feel, mind, body and spirit at pretty much every moment of the day, this quote from A-H was like a homecoming.

I take down so many vitals and signs, and in these words, there's a new permission for me in the phrase, "caring about how you feel". There's a freshness for me in this. It shifts the energy when it's not just about noting down in a particular moment, "Hey, I feel great, I must be doing everything right," or "Hey, I feel blah, maybe it's because of this drug they gave me or I need to take or maybe I just need more sleep." Instead, it's about deeply caring for myself, for that feeling I'm having in any given moment. For acknowledging it, and loving on it, and listening to it deeply, the way I would for a beloved friend who's experiencing something big or small.

For me, it makes me remember that it's more than just that it's okay to look at how I'm feeling: it's a reminder that creatively, it is useful to source what I'm doing with each moment of my day from what makes me feel good and what gives me energy. To note what drags me down and stop doing it. To only work from Source, from that which lightens and brightens, and shift away from that which darkens and dooms.

As I journey beyond Triple Negative Breast Cancer, it's not just the big feelings, either. One powerful tool that I have discovered makes me feel good is embracing four little crackers with almond butter and cinnamon as the round out to my first breakfast every morning in the week post-chemo. I make them with care. I eat them with a little ginger ale, and after I've had a banana and my first morning pill. They have become part of my beloved routine. I feel in control when I eat them. I feel happy. I know that for me, they are whole food, nourishing my body with the protein I need, and more, they are nourishing my soul with something pure and simple. Just four little crackers, but they make me feel joyous. How can that be? How can it not be?

As I've grown to realize how important processing through all these new feelings and sensations are that I'm experiencing is to me, I've been looking for new ways to re-connect with my Soul Purpose and Life Goals. Are they dramatically different now that I'm on this triple negative breast cancer journey? Should they be? Can they be the same? Can anything ever be the same again? Really?

It's fair to say that can't-sir makes me look at every day with a fresh lens. No two days are the same, and no day resembles anything like the life I lived before can't-sir in such a clear way that I have a roadmap to get me from point A to point B doing the same old stuff, in the same old way. There are so many questions still swirling in my mind about what I'm supposed to do as part of my healing journey, and what I'm not supposed to do. What I'm supposed to feel, and what I'm not supposed to feel. So many thoughts and worries and wonderments, and so many of them spoken in a voice I clearly know is not my own, given that it loves to use those words, "supposed to" -- yet there it is, and somehow it is the first point of entry to so many of my internal conversations.

I've been feeling strongly, with the end of the year approaching, and me in the midst of this wild journey, that it's the right time to do one thing I always do at the end of the year: my end-of-year review and goal-setting for the next year. But this year, I'm starting in a new place. Because one of the things I've seen with can't-sir is that it isn't worth a whole hill of beans to set out a big laundry list of tasks and to-do's. There are a lot of days when almond butter crackers at 5:30AM are just about the last thing that officially get done. The rest of the day is like an Alaskan wilderness adventure, complete with snowstorms and Sasquatch.

Danielle LaPorte - The Desire Map - How I'm using my feelings to help me set goals beyond TNBC
So, I've been working my way through Danielle LaPorte's new program The Desire Map (disclosure: this is an affiliate link, so if you should choose to purchase after clicking, I get a little cash). If you're not familiar with her or her work yet, I'd urge you to check her out. She is one of my favorites.

The thing I'm loving about this program so far is that it really does validate the utility of feeling my way into my focus. I love that!

Danielle describes her latest gift to the universe this way:

"The Desire Map is a holistic approach to planning your life. It guides you to identify your core desired feelings, and to use those feelings as the drivers of what you want to do, have and experience in your life. It turns goal-setting inside out."
As a coach and business leader, I've always been very focused on holding intentions and setting goals. I've worked with partners and clients in a range of ways to help them set meaningful and profound work and life goals. I am honored to have some amazing tools I learned in coaching school and have honed over the years that help direct the energy and focus back to what's really important for myself and those I support in those roles. But, the constant tension for us to DO something or to ATTAIN something often leaves me feeling that goal-setting can easily slip and become a hollow process. I hear, and have said myself, "Gosh, it just feels like a list-making exercise!" And I end up with a juiceless tasklist I end up resenting, or feeling guilty about not completing, when if I'm truthful, the reality is that it didn't get DONE because I set myself up to just do a bunch of stuff, rather than do the right stuff I can feel proud I've accomplished because each action reaffirms and enlivens my life with passion and vigor.

This program is pretty epic, and as I'm taking my time with all its pieces. (It comes with a printed book, a downloadable book, an audio book, a series of audio contemplations; a private, online Desire Map space; a mobile app, and 12 weeks of weekly inspiration to help you make desire-mapping a true practice. So much good stuff to play with!)

My feeling with all good work is that it is most meaningful when it becomes a practice, integrated with other practices I'm already doing that work for me, so that's a big part of my process with the Desire Map. I'll be sharing more about my experiences as I work through finishing the rest of it, and offer some insights and tips about how I think it might work for others interested in shifting their relationship to their goals and dreams. One of my big goals with goal-setting this year is to not feel that I'm striving to attain or complete another something. Instead, I want to feel that I'm savoring my way through my days. I think the Desire Map is already acting as a huge influencer in how I'm visualizing my life, so that's really fun to see.

If anyone's interested in doing the Desire Map together, particularly as you think about setting goals for the New Year, please let me know. I think a group would be a really powerful way to explore this work and tease out what we love and what we're going to integrate going forward!

Wednesday, December 5, 2012

Why I Am Willing To Be Vulnerable

A friend and teacher of mine, the marvelous Denise Sheehan of Sage Spirit, shared an enquiry about vulnerability earlier this week, and it has been much on my mind. 

Maria Nemeth, another of my great teachers, taught me in coaching school that to be vulnerable is:
“To allow the winds of life to blow freely over your soul. To let life in, on life's own terms. To be vulnerable means you realize there is nothing to protect.”
Learning from the trees....
This has been my experience, particularly of late. For me, it is both an act of doing, and an act of doing nothing. It can mean standing firm, standing my ground as life comes swirling in around me, with a toughness, a fierceness. It can mean swaying like a tree in the breeze. But, always, always, it is the latter piece that characterizes either of these two faces of mine as those of being willing to be vulnerable: realizing there is nothing to protect, not really, and nothing to protect it from, and letting it go, letting it all flow in, realizing all is truly well.

For so many of us, we experience fear, anger, aggression the moment the word “vulnerable” comes into the space. We throw up our metaphorical armor and get ready for a fight. As if the mere word conveys weakness, or terror, or something attacking us, or worse. For me, as I walk this path, being vulnerable is exactly the opposite. For me now, I see it as an opportunity for expansion, for growth, for leaning into what life presents. I see it as the doorway to fulfilling my soul mission. What a difference a little can’t-sir can make in your life.

What does “to be vulnerable” mean to you?
How have you typically experienced the state of “vulnerability”?
If this pattern no longer serves, would you be willing to shift to something that does?

Two Rounds of Chemo, and I'm Healing my 12-year-old Self

Round #2 of A/C chemo complete! And... it went even smoother than last time! Who’d have thought? It’s just been another amazing few weeks since starting the chemo portion of this journey -- and, there is still so much every day to learn, it just blows my mind.

I have to tell you, from the bottom of my monkey mind, chemo was the thing I was simply, totally, blindly afraid of when I learned it’d be part of my treatment plan. For general reasons, but for one very specific reason, too. 

When I was twelve, my dad died of lung cancer -- environmental, not related in any way that we can tell through genetics to the can’t-sir I’ve acquired. He was 47, so just 8 years older than I am today. His journey was in some ways a blessedly swift albeit ironic one: in less than a year, just when he’d been declared officially in remission and was doing great after rounds of chemo and radiation and experimental treatments, he surprised us by suddenly just being gone the next day. 

Through the fog of time, I always remembered the chemo as one of the worst treatments he took on himself, absolutely devastating his big 6-foot-4-inch body and racking him for days at a time afterwards. Silently, I always blamed the chemo as instrumental in his death, though of course, I had no proof of anything at all, and certainly no medical degree. I was 12. I just needed something to grasp onto. 

I remember, I wrote a poem long ago about my dad’s sudden passing when I was in college, from the eyes of that 12-year old girl. A few of the lines were: “And the nurse called us to see where we’d been. To tell us he was dying. Hurry, she said, he’s been dying all day. And, I thought it was strange, because I didn’t know a body could do that.” My second to the last memory of my father is of the morphine drip turned up so very high, and the sorrow on his face as he turned to me really quite out of his mind, but in the way the dying can be, also so suddenly lucid, and whispered, “Help me,” before my mom-- thank goodness for my mom -- suggested I just go wait in the hall for a bit. But, eager, loving child that I was, still holding out hope, still wanting to do something, still needing to know something, my last memory is of watching from the hallway through the door of the room as his body seized up under the sheets. And, then he was gone, physically, from us. Though of course, he has never really been gone at all, not in the ways that matter most.

So you can imagine all kinds of reasons why, about three weeks ago, I shaved my head in anticipation of the much promised AC/T baldness. To be clear, it was not an act of defiance against death. It was an act of defiance at the kind of life I will not choose for myself to live, one where can’t-sir tells me how it’s going to be, even down to the simple things like hair follicles. It was one way I could get to some kind of rational place with the one thing that really threatened to overwhelm my sanity in this wild journey. And, it worked. Yesterday was the 14-day-versary of my chemo treatments, typically the day by which you’ve lost all your hair and you’re feeling sick as a dog. It has not been so for me. So far, I continue to grow hair at a fairly rapid rate, and there are only half eyebrows and a couple spots that are either a) actually thinner or b) nasty cowlicks that I never knew I had. (Ok, I do think it’s getting thinner, but whatever!) Either way, I’m still so incredibly glad we took out the clippers and just did it. While I have never yet felt disempowered on this can’t-sir journey, the act of exerting a little control over something I really could control -- my hair -- felt like a powerful declaration about who I am, and how I intend to be as I travel this road and all the roads that lie in wait for me beyond triple negative breast cancer. 

While some folks questioned my doing this, I didn’t have to question myself. I immediately felt that sense of control and authenticity as the hair came off in peels around my shoulders: this is me, or one part of me at least, and I look like a badass GI Jane can’t-sir warrior, so I’m all good with it. I drank my last glass of celebratory champagne as the locks fell, and voila! A new woman! Plus, it’s given me the chance to rock my fantastic collection of scarves, hats and wigs, which I just really, really love.

Monday, I was given a great gift out of all this monkey-led nonsense. I had a chance to share space with a woman early on in her own can’t-sir journey who expressed how afraid she has been of the possibility of losing her hair -- “I really like your headscarf! It gives me hope. I’ve been so worried, ‘What would I do if I lost my hair? How would I look?’” she told me, “But you look so good! How did you learn to do this?” Glowing from her enthusiasm, I replied simply and truthfully: “You would look fabulous. And, as for how to figure it out, you can just go on the internet and look up how to wrap a headscarf. There are a million tutorials!” (Then I showed her how mine was wrapped that day (a double crown), so she’d know it really wasn’t so hard at all.) 

For whatever this small exchange was worth to her, it was a huge gift to me. I think of Mother Teresa’s instructions to all of us who seek to serve: 

“Spread love everywhere you go. Let no one ever come to you without leaving happier.” 

It seems to me that it in doing this for others, we give ourselves the chance for immense happiness as well. How simple, how lovely a thing! How often I forget, and lose myself in surliness and general malaise!

It’s always interesting to be around other folks battling can’t-sir or serving on a can’t-sir posse, because it reminds me each time that we are all really having this intensely personal, unique experience with it. While, of course, there are some commonalities, particularly if I find myself with someone who’s in a similar soul journey phase, or who has a similar general outlook on life, I often notice the different ways we define and articulate ourselves on this journey. 

For example, I am always one of the 2 youngest in my “chemo pod” (those of us who go for treatment on the same schedule.) Every time I walk through the door, the room takes a collective breath, the heads slowly swivel, and then the murmur can be heard circulating around the chairs, “But, she’s so young!” It’s pretty much the same everywhere I go for labs, tests, surgeries, etc -- always the youngest one in the room, and the source of much discussion. 

At first I thought this might prove totally depressing, but now I’ve realized this is one of the most life-affirming statements I’ve ever heard! It’s even better than being carded for buying beer! So now, I embrace it, I express my gratitude silently: “Thank you for caring about me, for seeing me, for seeing me as more than a patient, but as a person!” I smile, and go about my business, and if someone wants to chat, I chat. Sometimes I cry with them. Mostly, we laugh. 

What a thing. What a thing it really all is just to be here, walking this earth in the place and way we have been given. I know sometimes it’s hard to see it for the beauty it contains, but it seems to me, there is an exquisiteness to each of our soul and life journeys, illuminated in the challenges we take on. I think of the quote about having the courage to begin a thing, and it sustains me. I think of The Prayer of Saint Francis, and it heals me. I think of the first stanza from "The Waterfall" by Mary Oliver: 

“For all they said/ I could not see the waterfall/ until I came and saw the water falling,/its lace legs and its womanly arms sheeting down...” 

And Mary's words remind me: look, just look. There is grace all around us, in every moment of every day. Even the worst of them. Just look. 

Saturday, December 1, 2012

Helping Others: The Lydia Project Tote for Women with Cancer

Last week, I learned about a nonprofit out in Atlanta called The Lydia Project

Their website said: 
"The Mission of The Lydia Project is to serve women facing cancer by providing 
hand-crafted tote bags, prayer and ongoing support." 

My beautiful handmade "love" tote.
You can pick from different sayings.
I liked what I read, and so I made a small donation and requested a tote for myself. I wanted to physically see what they're doing and what the experience of receiving one was like.

One thing I always hear from the people is that they want to find tangible ways to give back to the causes they care about.  We all want to know we're helping actual, real people -- not just giving money to some anonymous entity. I struggle with that same dilemma myself, especially in the world of can't-sir nonprofits, which I've always been a little less enamored by, since so many of the causes we give to go only to fund research. Believe me, I know we need more research to get to root cause and better treatment and cure options -- especially those of us with Triple Negative Breast Cancer, one of the types of still relatively mysterious can't-sirs. 

Contents of my tote.
But, I also feel like we want and need to have ways to address the real and tangible needs of those right in front of us, dealing with dis-ease every day. And, I feel like this is one of those projects, both in the daily work this group is doing for women with can't-sir through the totes and support, and also through some of their long-term planning projects. 

I've been very lucky to have a great posse of amazing folks rally around me on this journey, and their support and love sustains me every day. As a survivor and a thriver with a posse, it was still an indescribably sweet, sweet gift to receive my tote and know that all the way across the country someone sent a thought to me that day. I want to make sure more women, especially those who are not having the same experiences I'm having, get access to every amazing resource available to them. 

I'll be sharing The Lydia Project with others this holiday season. If it resonates for you, I hope you consider doing the same.