Friday, December 12, 2014

In the Garden of Angels and IV Poles

“Oh, and wait ‘til you see the angel garden!” Madeline said, “Have you ever seen an angel garden?”

We were on our way to the infusion room. It was my first day with the Oncology Massage Alliance, a group of oncology-trained massage therapists who volunteer to give free hand and foot massages to people receiving chemotherapy. Madeline, the lead therapist, was showing me the ropes.

“Um…I don’t think so. An angel garden?”

“All the IV poles have angel ornaments hanging from them! There are angel figurines and pictures. People bring them in so there’s more all the time! Angels all over the place. It’s wonderful.”

My voice gets high when I lie. “Oh,” I squeaked, “That does sound wonderful.” It didn’t sound wonderful. It sounded tacky.

I can be a bit of a cynic.

I’d say I’m not proud of that, but that’s not really true and you’d know it isn’t because my voice would hit a register that only dogs can hear, so let's drop the charade. I’m a cynic from way back. I was ejected from my eleventh-grade sex ed class for excessive eye-rolling and gum snapping. I have no regrets. The instructor (a gym teacher who’d been saddled that month with “health” class duty) had an appallingly rudimentary understanding of human physiology and his contraception lecture was limited to, “Ladies, place an imaginary pea between your knees. Keep it there until you’re 30.” Eye roll. Gum snap. 

My mother gave me a copy of Our Bodies Ourselves for Christmas when I was nine. By the time I’d reached Mr. Gym Teacher’s class I’d read it cover to cover about 150 times. Frankly, I don’t think I deserved punishment. I deserved a medal! In the face of that nonsense rolling my eyes and snapping my gum was the least disrespectful response possible. He pointed to the door. “Out, Miss Jordan!” I glared at him with my right eye, the left side of my face completely obscured by a curtain of black curls. Eye roll. Gum snap. “OUT!” As I stomped out of the room he intoned like some ancient oracle, “They may take the girl out of New Jersey, but they'll never get the Jersey outta you, Jordan!”

Maybe he had a point. I seem to be an anomaly in my profession. Unlike many of my colleagues, I just can’t go in for fairies, astral projection, or angels (or imaginary peas between the knees, for that matter). I have no problem with those who do, but I prefer science. I prefer the banal miracles of the human body in all its fallen-from-grace glory.

Of course, Madeline is no Mr. Gym Teacher. Madeline’s affection for angels doesn’t diminish Madeline’s super-smarts and so, of course, Madeline was right.

In the infusion room where I volunteer there are angels all over the place. Some of them are made of porcelain, glass, or wood and many of them are, in fact, tacky. Lots of them, however, are beautiful, wing-less and wonderful.

Machines are beeping. Phones are ringing. There are a million and ten things that need her attention and must get done, but the angel with the blue nitrile gloves sits absolutely still. She holds a huge syringe of too-bright, lurid red liquid. She says to the patient, “This can burn if it goes in too fast, so I’m going to push it very slowly. If it hurts you at all, tell me. I can go even slower. Don’t worry. There is plenty of time.

The woman in the corner always comes alone. She never speaks to anyone but the nurses. The angel places a steaming cup on her tray. “I was getting some cocoa for my mom. I thought you might like some too.”

The angel under the blanket is too ill even to lift his head. He is clearly in pain. “No, thank you,” he says and gestures to the worried woman sitting in the uncomfortable-looking chair next to him. “Give the massage to my wife. She needs it more than I do.”

The angels give each other gifts and advice.

“Here, I knitted this hat. It’s softer than the ones from the store. No, no, keep it. I just make them to keep my hands busy…”

“Mouth sores? Yeah, me too. Try canned peaches. They’re slippery enough to go down fast and they’re the only thing I’ve found that doesn’t taste like sand.”

It seems so unlikely, these angels in this unholy garden. From the IV pole trees the shiny bags of chemicals hang like strange, menacing fruit. Blood blooms on gauze petals. There are weeds of needles and tubes. The mulch is piles and piles and piles of paperwork. The ground here seems fertile for hopelessness and despair. But what grows here instead, like persistent green shoots are countless angelic acts of faith and kindness.

The patient is one of my “regulars.” She smiles shyly. “Today is my last treatment. I was afraid I wouldn’t get to see you. I wanted to tell you – I want you to know. You’re an angel for doing this.”

I have no urge to roll my eyes, but I do wish I still had hair long enough to hide behind. I take her foot in my hands.

“Me?” I chuckle, “Far from it.”

I’m just a cynical girl from New Jersey. But sometimes I can see angels.

Monday, September 22, 2014

Beginner’s Mistake / Beginner’s Mind

I have a Mindfulness Practice. That is to say, I struggle daily (and with varying degrees of success) to sit in stillness with my breath and to live each moment with openness, awareness, loving-kindness, and equanimity – to cultivate what Zen Buddhists refer to as the “beginner’s mind.” Volunteer work is a big part of this practice for me.  Volunteering gives me a tangible way to offer service to others, or seva. It’s also a great way to learn stuff. And to re-learn stuff I thought I already knew.

Let me tell you a story.

Once upon a time I was volunteering at a busy hospital, offering free massage to patients. I usually only had 5-10 minutes to spend with each person. I had to reach around IV poles and other equipment to make contact with my clients. Nurses who needed to check vitals, or sweep my client away for a test or procedure frequently interrupted the sessions. It was a hectic setting, with very little of the calm and privacy one usually associates with massage. This is where I met “Norma.”

Norma was just beginning treatment for cancer. A friend sat in the chair beside her. It was not unusual in this setting for people to ask me about my work and myself.

As she leaned back to allow me to massage her feet, Norma and her friend (a self-proclaimed “survivor”) exchanged some basic pleasantries with me and then Norma’s friend began to ask about and discuss the risks associated with receiving massage from someone who is not specifically trained in Oncology Massage. You may already know, dear reader, that this is a particular passion of mine and within minutes, I was having an intense conversation with Friend about her history of lymphedema and the challenges associated with managing it.

Norma started to cry.

“Oh, oh! Honey,” Friend stroked Norma’s shoulder and grabbed her hand, “I’m sorry. Did we upset you? Don't’ cry. That’s not going to happen to you!”

“Well, it might.”

My heart sank into my stomach. My stomach sank into my legs.

“Well…sure, I guess,” Friend struggled to keep smiling. I kept my mouth shut and slowed the pace of my massage. “But you don’t have to worry or be sad! You’re here now and everything is going to be okay.”

“I don’t want to be here now! Everything is not okay! I don’t want any of this to be happening!”

I didn’t speak for the rest of the massage. I poured calm and sweetness into my touch, but inwardly I was raging.
How stupid I’d been!
I should have known better.
I did know better!

I love this work. I am committed to this work. I have many, many hours of training in Oncology Massage. I study with a brilliant and insightful mentor. I have a strong and supportive network of Oncology Massage Therapists.

A cancer diagnosis is terrifying. A person who receives this diagnosis is plunged into a world of uncertain outcomes, a world where the treatment can be as painful and scary as the disease, a world where one’s own body can feel like an enemy.

I believe the most significant benefit that massage can offer this person is comfort. I believe that my greatest gift to this person is my ability to use touch to remind her that her body can still be a source of joy. That she can still feel pleasure; that her body is still a good place to be.

Instead of offering Norma that gift, I’d allowed myself to be distracted. Like someone sitting in meditation for the first time, my brain had wandered away and I'd let it go. I’d been there, but I hadn’t been present. My lack of presence had made me unaware. My lack of awareness had made me insensitive.

Chatting with another person instead of focusing on my client?!
I’d made a terrible mistake… worse! I’d made a beginner’s mistake!
I’d been mindless.

I spent a great deal of time punishing myself. I reminded myself over and over that I’d hurt someone. I imagined all the graceful ways I could have redirected or ended the conversation with Friend. I crafted elaborate apologies at the same time that I prayed our paths would never cross and I’d never have to see or speak to Norma again.

About 2 weeks had passed when I read this from Jack Kornfield: 
Forgiveness does not forget, nor does it condone the past. Forgiveness sees wisely. It willingly acknowledges what is unjust, harmful, and wrong. It bravely recognizes the sufferings of the past, and understands the conditions that brought them about. There is a strength to forgiveness. When we forgive, we can also say, “Never again will I allow these things to happen.” 

I realized that this experience had been more Oncology Massage training. At the same time I’d been berating myself, I had also been focused completely and intently on my clients in and out of the hospital. I was mindful of my words. I was newly aware. I would not make the same mistake again.

I also realized I had already seen her! Just that day I had massaged the hands and feet of the woman I’d made cry 2 weeks earlier and I hadn’t recognized her! 

I can give you lots of reasons I might not have recognized Norma. It was another very busy day. I massaged lots of hands and feet. Almost everyone was wearing a hospital gown. She was in a different room. She had a different friend with her.

But the truth is this: I didn’t recognize her because when I walked up to her she beamed at me.

“Hi! I’d love a foot massage!” she’d said, whipping off her socks, “Can you do my hands today too?” She had nudged her friend and said, “This is the best thing! It feels sooo good!” 

“Finding a way to extend forgiveness to ourselves is one of our most essential tasks...we can hold the pain we have caused in compassion. Without such mercy, we will live our own life in exile.” – Jack Kornfield

I didn’t recognize Norma because I was looking for someone who was still wounded by my thoughtlessness, someone who hadn’t forgiven me. Turns out, I was the only one there who fit that description.

Thursday, September 4, 2014

Heart Strides

I discovered Heart Strides through the magic six-degrees-of-separation machine that is Facebook. This wonderful organization gives running shoes (via donations) to mothers of children with chronic illness or special needs. 

According to Denise, the founder of (and powerhouse behind) Heart Strides, "This simple gift of new shoes will be a starting point for many Moms, taking new and first steps to better health. For others, these shoes will help them to keep moving, to participate in events that are near and dear to their hearts."

I love this! I love this idea and I love the Heart Strides community -- women offering each other support and guidance, encouraging one another to care for themselves with the same intensity that they care for their children.

You're going to love it too. Check out the Facebook page. Visit the site. Donate some money.

Oh yeah, they have this pretty good guest blogger sometimes, too...

Friday, August 8, 2014

Walk the Walk

A couple weeks ago I wrote a blog about lymphedema (see below). It was inspired by the three days I spent at MD Anderson Cancer Center’s 10th Annual Integrative Oncology Training Conference and I’ll tell you the truth: the first draft – the one only a few people ever read – could be accurately described as a barely-controlled rant. I am forever grateful to the clear eyes, calm heads, and kind feedback of the friends and colleagues (you know who you are) who encouraged me to tone it down (a skill that has never been my strong suit).

Time certainly cools tempers (at least it does mine), but it does not cool passions. Today, inspired by Lauren Muser Cates’s strong, eloquent writing in “Be Part of the Solution” and yet another Internet kerfuffle about a “healer” spewing nonsensical lies about essential oils and Ebola, I’d like to revisit the passion that was flamed in my heart and brain at MD Anderson. I’ll try to spare you the ranting, but no promises…

A great deal of the 3-day conference at MD Anderson consisted of lectures given by oncology and integrative medicine specialists who work at the hospital. Sitting in the large conference hall, listening to these lectures, surrounded by nearly 300 massage therapists, yoga teachers, and acupuncturists, I was struck by three things:

First, how cool was this?! Physicians and massage therapists and yogis, oh my! All of us – lots of us – all in the same room talking about oncology research and treatment.

Second, nearly all the physicians and researchers who spoke gave the same sort of talk they would to any other group of colleagues. There was no “dumbing down” of their information or statistics. They addressed us as equals.

Third, (sigh) nearly all the questions posed to the presenters were not so much questions as angry accusations. There were a lot like this:

“Isn’t it true that if you were prescribing ________ [insert essential oil, herbal supplement or vitamin of your choice here] your patients would experience no unpleasant side-effects from chemotherapy?”

“My husband works with a woman who was diagnosed with cancer and she injected herself with hydrogen peroxide and was completely cured. Why aren’t you offering your patients that instead of these toxic chemo drugs?”

At first, the presenters seemed to take this all in stride. They listened intently to questions and answered them respectfully and thoughtfully. But as time went on the attendees appeared less and less receptive. Their questions and comments were more and more vitriolic, peppered with pseudo-science and outrageous claims. The presenters’ politeness got more and more strained and their answers stopped sounding collegial and started sounding a lot like parents indulging a cranky toddler.

“Well, there are a lot of things written on the Internet,” one researcher condescendingly replied when asked about a type of diet, found online, that would lengthen telomeres and allow us all to live cancer-free into our hundreds, “we need to approach everything we read online with a bit of skepticism...”

It was astonishing and deeply disappointing. I was sitting in a room full of educated people who have devoted themselves to healing, to the service of people who are ill and in pain, to what I believe is the ultimate form of loving-kindness, and yet the hostility between them hung in the air so thick and heavy that I could feel it sitting on my skin, stinging my eyes, and leaving a really bad taste in my mouth.

Finally, a physician who specializes in advanced prostate cancer showed a crack in the façade. “Listen,” she said slapping the podium, “I’m not trying to protect my job or something. If there were a cure for cancer, I’d gladly do something else! I would love to open a restaurant and cook for people all day!” The person sitting next to me rolled his eyes and snorted audibly. I wanted to cry.

Here’s the thing: this was an integrative medicine conference. Its very name tells us it was an opportunity for medical and bodywork professionals to come together. It was held at, and given by, one of the biggest cancer hospitals in the world. A giant of "western medicine” reached out a hand to us and we slapped it away.

I was reminding of something Tom Myers once said, “If we as bodyworkers want a seat at the medical table we’re going to have to learn to walk the walk and talk the talk.” I think he was half right. 

I’m not a doctor. I’m a massage therapist.

I don’t want a seat at the medical table, but I’d like to be able to visit – maybe ask to borrow the salt or see if it’s worth ordering the ravioli. And I want those folks at the medical table to feel free to visit mine – “Hey, I’m a vegetarian, but my friend here would like to know if the steak is any good. What do you think?”

Does traditional western medicine have all the answers? No way.
Do I think that massage can do things a pill can’t? Absolutely.
Do I think oncologists want people to suffer and die from cancer? No, I do not! 
Do you?

We don’t have to place ourselves beneath western medicine or agree with everything it presents. We don’t have to completely adopt the language of doctors and nurses and abandon our own, but do we have to learn to understand it. And we have to learn to respect the people who speak it. It is our only hope for teaching them to understand and respect us.

My colleagues, I beg you: 
  • Examine your beliefs and their sources. There is a lot of “research” out there and a good deal of it is incomplete or poorly done or just plain wrong.
  • Focus on your scope of practice. Do what you are trained and qualified to do and do it well. My dentist doesn’t offer foot rubs and I’m not going to clean your teeth. I will, however, help you with that neck and jaw tension that results from an hour in a dental chair getting your teeth scraped! You need us both.
  • Remember that we all want to help people. And that the best help can come (and should come) in many different forms, from many different angles.
Let’s abandon “alternative” once and for all and embrace “complimentary.” In a world of widening divides – racial, economic, political, etc. – let’s reach across the aisle and start to close the gap. Let’s stop waiting for the medical community to come to us and reach out to them. Let’s find a lingua franca. Let’s all talk the communal talk of people who are trying to help other people while we walk our own unique walks.

Thursday, July 24, 2014

Kerry's Lymphedema Lecture

I have just returned from Houston where I attended the MD Anderson Cancer Center’s 10th Annual Integrative Oncology Training Conference. I spent three days in lectures and training sessions given by some of the smartest people I have ever encountered. I also got to hang with a few of the amazing and hilarious therapists from the Oncology Massage Alliance. ( I will gush about these fantastic folks and their important mission in an upcoming post.) The conference was awesome. It was edifying. It was compelling. It was overwhelmingly inspiring. It left me thinking and writing about several things that I plan to share with you, dear reader. The first thing is lymphedema. 

Do you know about lymphedema? You should. Everyone should.  Unfortunately, very few people do.

Lymphedema is a condition that arises when there is malformation of or damage to lymphatic vessels. The lymphatic vessels in our bodies are crucial to immune function and fluid balance (and probably a lot of other things that medical researchers still don't really understand well).  When lymphatic vessels don't work properly, protein-rich fluid backs up into the tissues. It creates swelling which can potentially cause painful deformity, damage tissues and organs, and put a person at high risk for serious, systemic infection. 

In case this bland, science-esque description made your feel like this, take a moment to do a Google image search of lymphedema. Go ahead. I’ll wait…

Right, you’re back? Should I tell you more? I thought so.

Unfortunately, cancer treatments can be a significant source of lymph node damage. Radiation can kill or scar lymph nodes and vessels. Cancer surgery, especially the surgeries used in the diagnosis and treatment of breast cancer, may involve removing lymph nodes. 

Now, will everyone who receives radiation or surgery that affects the lymph nodes develop lymphedema? No. Absolutely not. Some people develop lymphedema after cancer treatment and some do not. 

Everyone who receives radiation or surgery that affects the lymph nodes is at risk of developing lymphedema. And that risk is life-long. So everyone who is at risk needs to follow some basic precautions to avoid developing lymphedema. And everyone who has a history of lymphedema needs to follow precautions to avoid triggering symptoms. And guess what... These precautions include only receiving massage from a trained oncology massage therapist!

In my massage practice I encounter many people who have survived the awful gauntlet of cancer and cancer treatment and now want to receive the same massage they were accustomed to receiving before their diagnosis. They are often frustrated because they feel like they are past cancer and they have a hard time believing that a “regular” massage could trigger lymphedema, but the truth is: it can happen. It has happened.  It is a very real risk and I believe that no massage is worth risking a person's health. Furthermore, a massage provided by a trained and skilled oncology massage therapist can absolutely meet the needs of a client without putting them at risk. So any risk is unnecessary risk.

If you’re thinking, “I can’t believe it! I’ve received (or given) a risky massage! I didn’t know!” Take a deep breath. It’s okay. Once upon a time I thought the same thing. I felt the same way. You didn't know. But now you do know. So what can you do?

So if you're a massage therapist, get trained
If you're a massage client with cancer or cancer history, get the right massage therapist!
And if you're a human being with a lymphatic system, get educated! 
Here's just a small list to get you started:
Lymphedema - Are You or Someone You Know at Risk? 
Step Up Speak Out
National Lymphedema Network
Lymphatic System - Khan Academy

Spread the word!

Tuesday, June 17, 2014

Parting Gifts

“I feel with all the clients I’ve lost...whether I’ve said goodbye or not, my hands never say goodbye. All of our clients are always in our hands. I am thinking of one client in particular. She died years ago. I can close my eyes and I can feel her—her body, her scars—to this day I can feel her in my hands.”

My smart and eloquent colleague, Marie-Christine Lochot, said this to me during a conversation about our clients who have passed away. We both specialize in Oncology Massage and so have more experience with this than perhaps we'd like, but today her words have returned to me in a slightly different context.

After nearly twenty years of living in Boston I am moving to Austin. This means, of course, that I am closing my ten-year old massage practice and bidding my clients, farewell. This has been bittersweet, to say the least. It has also been very instructive and very, very humbling.

Clients’ initial reaction to my news was the same. In case you aren’t from around here, I’ll tell you: When you tell a New Englander that you’re moving any further south than New York City you can expect your announcement to be met with cartoon-like, eye-popping incredulity. “You’re moving to Texas?!” “I’m moving to Austin.” “Yes, but Austin…well, that’s in Texas. TEXAS!”

So, yeah, pretty much everyone started there. There has, however, been wild diversity in people’s behavior during and after their final massage session. 

The retired plumber pulled me into a sudden bear-hug and sobbed piteously on my shoulder. 

The stern surgeon spent her entire final session fiercely interrogating me about the qualities (including height and hair color) of the colleague to whom I was referring her. 

The couple I’d seen in their home every week for the past 8 years said, indifferently, “Thanks, good luck, goodbye,” and shut the door so quickly that I found myself replying to the brass knocker.

And then yesterday… 
When I returned from putting the pillows away I found my client in the kitchen. She smiled conspiratorially. The chemotherapy has hollowed her cheeks and thinned her face, so her dark eyes seem larger every time I see her. Now they were gleaming. Her thin fingers were caressing a pile of heirloom beans with the same care and tenderness I’d just recently been using over the fragile, prominent bones of her spine and ribs. “I wanted to give you something,” she said, “I collect them. They look dried and dead, but you can plant them and they will sprout and you will have beautiful plants and delicious beans to eat in your new home.” She poured the mottled gems into a plastic baggie and I took it reverently. I grinned at her and swallowed hard. Of course, I thought about time. I thought about the time it takes to drive across the country. I thought about the time it takes for beans to germinate and grow. I thought about the time it takes for an aggressive cancer... I stopped thinking. I steadied my voice. “Thank you.” 

In that moment, cradling her gift in my hands, I realized that I’d received gifts from all of them. For ten years I’ve received a gift each time one of them cried on my table, squirmed under a little too much pressure, closed their eyes and sighed under my touch. My clients’ final gifts, their goodbyes, have beenlike all their giftsas unique as the contours of their muscles and the sensations of their skin. Marie-Christine is right. I will take them all with me. I will treasure them. I will hold each of them in my hands for the rest of my life.

Now if you’ll excuse me, it’s time I saddled up the Prius. I’m heading west with a handful of gratitude…and some magic beans.