Shirin In Avène

I met Elise at a group luncheon the day after I arrived .  We met for coffee afterwards during which she went through all the nuts and bolts of my daily life here.  We continued talking for a while and got to know each other a bit.  We talked about New York, life in France and other lovely topics of conversation that occur amongst newly introduced friends.  It’s been over two weeks and I have seen her interact with patients, give seminars and tend to the needs of so many.  

There is a  warm familiarity about her which perhaps explains why she is so effective at dealing with patients and their families.  You feel like you’re in the company of someone who you know and trust.  All of us here are so open and raw… and I’m not talking about our skin.  Our souls are raw, our hopes and fears are exposed.  I can’t begin to explain just how vulnerable we all feel.  She gets it, she genuinely empathizes and it truly helps me (us) feel safe.

I have had a handful of conversations with Elise by now and have grown quite fond of her.  Her strength is of a different color.  She is calm, subtle, gentle and yet every gesture she makes… every word she speaks… is filled with such intent.  It’s a strength that’s grounded.  It embraces everything with such a delicate force.

When we first spoke, I told her that I was going to take advantage of my free time here and work. I wanted to come up with a new business plan, update my website, and about 100 other things that I thought would improve my life.  I was getting “New York excited” about all the things I was going to accomplish while here!

She looked at me, and very simply asked me to consider doing “nothing”.  She asked me to think about taking everything off of my plate and just go through the motions.  By saying this to me, she has given me permission to let go and not have to “know”, not have to “define”, not have to “understand” anything.  The only expectation I have is to eat, sleep go to treatment and… breathe.

I’m diving into my senses now.  My eyes are becoming wonderfully overwhelmed and bombarded with lush, colorful textures… which are leading me to taste the spicy sweetness and lively bitterness of the nurturing fruits of the world around me…  intoxicating me and making me stumble into the winds that are howling melodiously in my ears.  I know, I sound like I must be “on” something.  I’m not, I’ve just spent so many years GRIPPING SO TIGHT to everything I think I’m supposed to be, to everything I’m supposed to do… so much so that the connection between my senses and my surroundings have been numbed.  And I suppose that this is what happens when feeling comes back and all of these sensations come flooding in.

Thank You Elise… for opening my eyes to everything that this experience can be.

 

 

 

It all began with Martine.  After a 26 hour journey, I pulled up, many hours late, and was greeted by her smiling face.  I was somewhat frazzled and quite tired mentally, physically and emotionally.  She was so warm… so energetic and not at all thrown off by my unavoidable tardiness.  She is, after all, the captain of this journey.   All the planning  is in her hands… and she is my guide in more ways than I could have imagined.

My case, being the first of its kind, is being documented and meticulously followed.  I was told at the very beginning that I would be interviewed, filmed and photographed.  Knowing all of what she had to juggle and oversee made me think that this person that I was about to meet must be very serious, regimented and on top of everything.  Don’t get me wrong, she is all of these things, but the only thing I experience when I’m with her is her humanity.  She seems to have a similar excitement that I see in Dr. Petit (that this incredible treatment could effectively treat a new skin condition).

I love being in the presence of women who have qualities that I aspire to have.  She is quite intelligent both mentally and emotionally and I’m sure that there is a long trail of work and accomplishments behind her that have had a positive impact on those who inhabited her circle of care.  Avène Hydrotherapy Center sponsors children from around the globe so that they can get this life changing treatment.  Insurance does not cover this treatment in most countries so they are doing everything they can to provide physical and emotional relief for as many as they can.  And it’s Martine who holds their hands through this.  We arrive nervous, hopeful, afraid… and to have her inviting us… which is exactly what she does, she invites us, she receives us with such enthusiasm that it makes us feel important and valid.  This made me feel so confident.  I think that the initial response, the initial energy, the initial feeling with which you enter this treatment is so important.  Every experience after that is built on this very first step, and Martine makes sure that it is filled with stability, strength.

 

I remember that day in July, shortly after being diagnosed with RIM (Radiation Induced Morphea), when Dr. Mario Lacouture at Memorial Sloan Kettering Cancer Center, mentioned this treatment to me.  He told me that it is a trial and that I would have to be accepted first.  The doctors at Avène  Hydrotherapy Center, were looking for someone with my condition and he felt that I could be a good candidate.  Fast forward I was submitted and accepted 🙂

I was somewhat unclear about what would be awaiting me.  I knew there were doctors there but somehow, it didn’t seem “medical” to me.  Being from U.S.A, I’m not used to “natural” and “medical” coexisting under the same roof let alone practiced by the same doctors.  The reality of this beautiful marriage materialized when I met Dr. Sabine Petit.  Walking into the examination room, I started to feel a sense of childlike curiosity.  She was so bright and kind, and well…petite :).  Her delicate frame could barely contain her voluminously delightful energy.  She inspected my lesions with scrutiny and care, and to me, she seemed excited.  I suppose I would be too.  This medically proven treatment for eczema, among other skin conditions, is about to be tested on a new ailment for the first time.  I was getting excited too.  I was thinking “Well, they have chosen my condition because they feel that there is a possibility that this treatment could make an impact.  It’s not like they closed their eyes and picked a random “disease name” out of a hat.”

Don’t get me wrong, I wasn’t  excited because I was being given false hope.  I was excited because I get to be a part of this thing that’s so much bigger than me and my brown speckled body.  Whether this treatment works or not, or to what extent it improves my condition, I get to go through this tunnel.  And I know that in some way, shape, or form, I will come out of the other end changed for the better.

I don’t have another appointment with Dr. Petit until the day before I leave, but I have been seeing her joyous face at the treatment center many times.  I feel very confident when I say that her energy alone is a source for healing and I know I’m already better having her as one of my loving doctors!

 

 

I can’t believe that tomorrow ends my second week here.  I just came back from a run around the Barrage D’Avène (a reservoir that is more like a natural wonder than anything else…I will add a photo at the very end of this post…its so beautiful!).  I have not been looking at my lesions too closely but when I was out in the sun today, I swear I could see new pink skin starting to peek out from behind the coffee-colored continent that is on my shin.  All of this is because of water?!  This water IS the Natural Wonder.  I’ve heard many here call it “magic”.  I’ve even found myself saying that.  But to call it magic, means that it is not of this world or that it’s supernatural.  So to call it “magic” takes away from the beautiful reality that is this water.  And the fact that it is incredibly “real” and “explainable” is proof of what this planet is capable of… and knowing this, moves me to believe that my potential to evolve and heal is endless!

 

My treatment includes baths, showers and massages with this water which is directly from the spring.  I also drink around 1.5-2 liters.  It looks, feels and tastes like any other water.  And now that I’m seeing small signs of improvement, I find myself staring at the translucent bubbles and pearls that surround me.

I have never thought about the water that I’m bathing in, that I’m drinking.  Water has always been a means to cleanse and to hydrate.

I have never felt what I am feeling now.
I find myself having this new perspective, this bizarre and lovely partnership with the water.  We share a goal… to recover… to strengthen.  We share a goal to take me one step closer to a new understanding of what it means to heal.

 

And now that photo of Barrage D’Avène that I promised 🙂

I am within my second week here in Avène. I have been staying at Eau Thermale Avène l’hôtel, which is hands down the most eco-loving place that I know to exist  (eco-friendly does not do it justice) .  The treatment center is connected to the hotel, so my commute is about 90 seconds.  I love this for a couple of reasons.  First, I can climb out of bed and be in the jacuzzi within 10 minutes.  Second, and most important, is that there is no interruption from the serenity that surrounds me the moment that I wake until, the moment that I begin my treatment.  I would think that this fluid transition only adds to the efficacy of the treatment and the pleasure factor of this entire experience.

I have done quite a bit of exploring during this past week, and though I have ventured far and wide, the most stunning and moving vistas have been on the grounds that embrace the hotel and treatment center.

I had an unexpected reaction the first time I walked the expansive grounds.  I can’t explain why, but the overwhelming disbelief of this place actually existing, made me burst into laughter.  It was  as though I was in the middle of a fantasy film, where my mystical surroundings were created through CGI and special effects, and that I had to keep reminding myself that what I was seeing is actually real, not Hollywood magic!

Its strange… whenever I travel, my camera is always an extension of my arm, so much so, that sometimes I think that my nerve endings extend to the tip of my lens.  But here, I barely shoot (compared to my norm).  I think I am slowly learning an unintentional life lesson.  For as long as I can remember, I have been using my camera to capture every extraordinary sight and experience. But I’m realizing that capturing them, could  be preventing me from fully absorbing them and breathing them in… from having them become a part of me.  This isn’t an “a-ha” moment which is making me leave my camera in my room, but rather an absence of desire to reach for it in the first place.  For many years, I’ve been aware of the urge, the responsibility and the joy of knowing when to shoot.  But now, I’m becoming aware of the urge, the responsibility and the joy of knowing when not to shoot… so ironic that I am figuring this out in the most beautiful place that I have ever seen.

The images that you will see in this blog are captured, not when I have the urge to shoot, but rather, when I have the urge to share 🙂 .

As soon as I found out that I was going to Avène, I decided that I was going to take advantage of this opportunity to explore the south of France.  My treatment was done by 11:00 am on Saturdays and I had Sundays off.  The first Saturday, I took an overnight trip to the city of Carcassonne.  Not only was I excited to see a new city, but I was excited about the drive.  Driving here is a magical experience… especially if you love to drive.  You have to be careful though, the beautiful scenery can be so distracting that once I came close to driving off the side of a mountain… SERIOUSLY!

I checked into my hotel and decided to head out.  I arrived a little later than I had wanted, but I still I set out on an hour-long journey by foot (well, it was a 15 minute walk, but I kept stopping to sit and absorb the different nuances of the place).  By the time I got there, the sun had long set… and the first unobstructed sight of this ancient city was of  gilded splendor against a rich black velvet canvas.

I didn’t sleep well that night.  For the first time since I left New York, I felt out of place.  I found myself longing for my bed back in Avène.  I had felt at home from the moment that I got there.  I never had the sensation of being a “stranger in a new place”.  Even though Avène was undiscovered country, I felt that all was as it was meant to be, and that I was genuinely welcomed.  I couldn’t wait to wake up and head back “home”.

At breakfast… by the way, the hotels in France really know how to do breakfast… anyway, back to breakfast.  So as I was eating, I realized that this is the perfect place to go get souvenirs for my niece and nephew, Max and Ava.  As I was approaching this fortress again, I thought of how complete it would be to have them as my fellow explorers.  Thinking of them got me excited to go in.  I started to feel Max’s adventurous curiosity, and Ava’s rich awareness of everything around her.

I had never enjoyed shopping so much. Looking for the right gift made me think of them and reminded me of what I loved about them. I even stumbled across the perfect piece of this experience to take home to my boyfriend Jeff.

I was ready to head back home… to Avène 🙂

 

 

Each time I’ve arrived for treatment this week, I have been greeted by Emilie.  There is no denying how stunning she is, but to be honest, that has nothing to do with why I wanted to photograph her.  She has a warmth and openness that makes you feel like you are exactly where you belong.  And she is just one example of the many people you encounter when you walk through the doors of the treatment center (I will photograph and share more faces with you as the days go by).

Everyone here treats you as if they have a personal stake in your well-being.  I believe that the way caregivers treat you and the energy that they bring into the room, plays a huge role in your response to this treatment.  Today, I walked by a room where I saw an infant of no more that 9 months being treated for a skin condition that covered his limbs and torso.  I watched this lovely woman dressed in white, gingerly wrap his/her arm with a compress soaked in the water.  The baby was so calm and happy.  While I was watching them, it all of a sudden hit me… I’ve seen so many children of various ages, with severe skin conditions, being treated here, and while walking through the halls these last few days, I’ve never heard crying.  I’ve only heard laughter and the playful banter that goes on between kids and their parents.  As this realization washed over me, my eyes began to well up and I felt a sort of gratitude that is completely new to me.  It wasn’t gratitude for the treatment that I was receiving, but gratitude for witnessing the positive impact that humans can have on one another.  Not with technology, not with money, and not with a well honed skill… but with a commitment to caring for someone with empathy, respect and love.  This feeling and memory will be a gift that will live within me forever.  It will heal my “ills” for years to come, and it will help put me back on track when I lose touch with what really matters in this life.

I’m falling into rhythm with my treatment regimen.  I’m wondering how it can be aggressive enough to treat my condition.  I can’t seem to wrap my mind around the fact that these very relaxing treatments with water could potentially improve or even cure my condition… a condition where my body is pretty much attacking its own skin and, well, for lack of a better word, “killing” it.  But I’m already seeing a difference, more so than I did with the topical steroid that I was using!

So here’s how it goes: I start by soaking in a Jacuzzi type bath filled with mildly warm water for 20 minutes. I then have either an under water massage which consists of lying on a table with a row of shower heads above me spraying water, while a masseuse massages me, or a scalp water spray.  And finally, every treatment ends in a shower stall with 3 rows of shower heads spraying with regular water pressure for 5 minutes, then a mist-like spray for 5 minutes.  All of these treatments use 100% Avène Thermal Spring Water.

I chose to have my treatment early in the morning so that I can have the rest of the day to explore.  It’s strange because after treatment, I’ve been very tired and go back to bed.  I spoke to my doctor and she said that the first week is very draining on the body.  I’m glad because I want to have energy to go create some mischief on this part of the world ;).

I’ve had trouble with insomnia for about 10 years, which had gotten worse after my breast cancer diagnosis and treatment in 2013.  Things started to change almost immediately after arriving in Avène.  I’m not saying that all of a sudden I was sleeping like having just bitten into a beautiful poisoned apple… I’m still struggling, but there is a difference.  You see, there’s a “double whammy” effect caused by insomnia.  First, the stress that comes from the lack of sleep.  Second, there is anxiety that comes with fearing that you are not going to be able to sleep… which makes the insomnia even worse.  It’s a vicious cycle that feeds on itself until you feel helpless.  The difference I’m already noticing, is that even though I’m still not able to sleep through the night, the stress of whether or not I’m going to be able to sleep through the night is disappearing.  It is already making a difference in the quality of the sleep that I am getting.  I’m experiencing less stress and there is a noticeable presence of “bright eyes” and a “bushy tail”, if I do say so myself :).  I think the sleep factor is important to mention because bad/lack of sleep plays a major role in having a healthy immune system.

Am I seeing a difference in my skin lesions?  I think so.  But, that could be me wanting to see a difference.  But, I find myself not really focusing on that.  There is a sense of faith within me… not a blind faith that occurs when you’re desperate and have exhausted all options… but a kind of, how can I explain it, a “scientific faith” because you know that there is something occurring that is beyond your personal, limited sense of comprehension.  It’s a feeling and a voice resonating in me that says:

“I’m supposed to be here… no matter what the outcome… I’m evolving into a spiritually and physically healthier person which will continue to evolve long after I leave”.

It’s amazing to have this serenity by my 3rd day.  This place just “is”…there is no need to be convinced of the effects of the treatment.  There is no need to be “open-minded” to be able to reap the benefits of it.  You arrive, and you almost immediately become part of this energy that just “is”.

I do hope that I’m making sense…its a bit of a difficult phenomenon to explain.

 

So I’m going to end this post by letting you know that I will be sharing photos (occupational hazard :)) of my surroundings, adventures, and of the beautiful people (fellow patients, incredible caregivers, and new friends) who are already playing an important role in this journey.

 

 

Yesterday,  I arrived at Eau Thermale Avène l’hotel in Avène, France.  After what seemed like a never-ending journey consisting of hours of delay in two airports and a drive that was supposed to be an hour but ended up being 3, I pulled up to the front of the hotel.  I was a bit frazzled and stiff because I had gotten lost.  On top of that, I had to relearn how to drive a manual car.  Due to the flight delays I was arriving 5 hours later than expected.  All I could think of was “Oh God, these people are going to hate me before they have a chance to meet me”.   As I anxiously pulled up to the front of the hotel, I saw Martine smiling while waving me in towards her. Martine is my liaison, and pretty much the person who was organizing everything here for me.  As I stumbled out of my car, she greeted  me with the warmest, most organic embrace. The kind of hug that you get from someone whose known you for years.  Within mere seconds, all the anxiety and stress I was feeling just dissipated in the fragrant air around me.

After checking into my room, I joined Martine, along with a family from Poland (here to treat they’re young daughter’s eczema) for dinner.  I then retired to my room, put 3 weeks worth of “stuff” away, and crawled into bed.  I was too tired to really take in the beauty of my surroundings when I got in last night. When I woke up, I walked out onto my balcony and my breath escaped me with a rush.  At the same time, I found that I was breathing deeper than I had in a really, really long time.

After breakfast, I saw my doctor, Dr. Petit, for the first time.  As you can imagine, I was quite nervous. But her energy was so “bright”… I felt at ease almost immediately and by the time I walked out of the office, I felt completely secure.  She prescribed my treatment, prepared me for the fatigue that I was going to experience the first week, and then sent me straight to the treatment center to get me started with my 21 day course of hydrotherapy.

I had no idea what to expect.  I purposely decided not to do too much research before my arrival.  After all, I didn’t quite understand my disease (Radiation Induced Morphea). The way I understand it, RIM is a type of Scleroderma that occurs months to years later on the area of the breast that has been treated with radiation therapy.  This in itself is rare.  Mine is extra, super rare , because other parts of my body are responding as if they have been radiated as well (shin, abdomen, and lower back).  Treatment options to manage the disease are steroids, light therapy and the most effective, methotrexate (a chemotherapy drug).  The drug route was not something I felt comfortable with.  Just as I was about to feel the despair of having a disfiguring disease, My wonderfully talented and empathetic doctor, Dr. Mario Lacouture at Memorial Sloan Kettering Cancer Center, recommended I be submitted for a treatment trial in Avène. They had never treated this disease before and were looking for a patient.  Fast forward a month later, I qualified and that is how I ended up here.

I had never heard of hydrotherapy, no one I know has ever heard of hydrotherapy.  All I knew was that this place offered a natural approach to healing that could potentially prevent recurrence of skin disorders/diseases.  I decided to just dive in and not overload  myself with information that might wake up the tiny little “Skeptical Monster” in my brain.  All I needed to know was that there were no drugs involved and that it was all natural.  I will admit, it was easy to dive in because this 3 week treatment takes place in a luxurious, modern, and super “green” facility/hotel in a lush mountainous region in the SOUTH OF FRANCE!

Here is my prescription for my treatment with Avène Thermal Water.  I soak in a bath for 20 minutes, then I have an underwater massage for 20 minutes, scalp water spray and then an upright shower with multiple shower heads spraying water at me from multiple directions. I also have to drink 1-2 liters of this water every day.  This isn’t just any water though… it is a very specific thermal spring water that only exists in Avène, France.  As “spa-like” as this therapy seems, it is highly effective and medically proven to treat:

• Atopic dermatitis in children
  (from the first few months of life)
• Persistent atopic dermatitis in teenagers and adults
• Infectious eczema
• Contact eczema, especially of professional origin and evolving towards chronicity
• Eczema related to venous circulation problems affecting the lower limbs (varicose eczema)
• Burn-related scarring both during the healing process and subsequently (thick skin, bridging)
• Hypertrophic and keloid surgical scars (thickening, inflammation),
• Atonic wounds (without tendency for spontaneous healing

… and I feel very confident that Radiation Induced Morphea will be added to that list :)!

Here is some info about the water here in Avène:

“Avène thermal water comes from a spring with deep origins resulting from very old rainfall. We now know that it has remained infiltrated in the ground for more than forty or fifty years (isotopic dosage measures with tritium).” http://www.avenecenter.com/en/thermal-water

“Avène Thermal Spring Water (TSW) is a natural active component characterized by a low mineral content. In vitro experiments have demonstrated the effect of Avène TSW on membrane fluidity, its antiradical and anti-inflammatory properties, its effects on many mediators involved in the immune response and its stimulating effect on keratinocyte differentiation. The clinical efficacy of the water was demonstrated at the hydrotherapy centre in chronic and disabling diseases such as atopic dermatitis but also in various settings in medical and post dermatology procedure such as photodynamic therapy or photothermolysis. All these data support the fact that the Avène TSW is an active component.” – US National Library of MedicineNational Institutes of Health.

I think that covers the nuts and bolts

Here we go… this journey has begun!