Learning the Real Meaning of Christmas

This blog has been difficult to keep up with of late, this is no secret. In May of 2010, I started writing here as an outlet for my thoughts and a way to stay in contact with loved ones while away in Houston for transplant. It continued as the same when I returned home and stayed that way for awhile. In the last few months, as my life and health have stabilized, writing has taken a backseat to living. This, admittedly, has been just fine with me. Someone will ask, I say I'm going to post, and then I get wrapped up in something else and then can't get the process started.  Or something happens that I want to write about, but can't bring myself back here.  It has become very easy to temporarily forget everything that happened in the last 12-18 months.  The last few weeks changed this pattern dramatically, which is why I'm here again, you're here, and there are words here for the first time in weeks.

Let's jump right in (bum bum bum- a little joke for my music friends. Sorry.). This will be a bit fractured, there's quite a bit to write.

About ten days ago, I began to feel tired.

Not the kind of oppressive exhaustion that came with my diagnosis three years ago. This was more...normal (for me). It coincided with a very busy and stressful time at work, a busy weekend spent outdoors at Henalopen State Park in DE for First Descents, the holidays and the undeniable onset of a little cold. Having just seen my team at PENN two weeks before, and having received a (relatively) clean bill of health, I was not concerned. Well, until last Wednesday.

That morning I got up a little later than normal as my work schedule allows me a few extra hours on Wednesday mornings. Usually, I am my most alert this day, which is probably what saved my butt this day. I woke up and knew something was wrong as soon as my feet hit the floor. My vision wasn't right. Not "call 911" not right, but certainly "something is up, watch out" not right. If you've ever passed out from light-headedness or had a head-rush from standing up too fast, this is exactly what it was like. I had dark spots and floaters at the edges of my vision, as well as those glitter-like marks that explode just before reaching the center of my line of sight. I got ready and walked to work, noticing that I was both more breathless than normal (I was on the phone with my Dad) and that the spots weren't going away. I taught my first few classes with this strange phenomenon in my vision. In hindsight, this was stupid. Calling my doctor or going to the hospital is absolutely what I should have done, however, when you're used to odd things coming and going without consequence AND have just seen blood work suggesting that you're fine, it's very easy to take a 'watch and wait' mentality. As I've come to know, sometimes we need to mirror of others to know when something is very wrong.

So, here I am, at lunch with a few colleagues and this nagging (though not extremely intrusive) vision thing and my friend grabs my hand. My skin was mottled.  The look that your skin gets when you've been out in the cold with no gloves for a little while. This was something that P had noticed the night before, but it's cold here.

Cool skin, bro.

Sufficiently freaked out, I downed the rest of my lunch, hightailed it back to my classroom and snapped a picture to send to P and to my doctor, just in case. I then scampered down to the school nurse and requested that she take my temp and blood pressure as well as popped a Benedryl (just in case). I decided to wait until my day was over (only an hour, which would give the allergy pill time to kick in) and then page Dr. Porter. Suffice to say, it didn't work, so an hour later I paged my team. A very generous coworker drove me to PENN (with the permission of a very generous Principal who allowed her to leave early to get me there- I don't and could not have, driven). One very confusing CBC and frightening meeting with my NP later where I was warned to stay very warm, I was sent to another hospital to have my eyes checked. P met em and this ANGEL of a coworker and friend at the other hospital, where my eyes checked out just fine. My NP called and said that my blood work was coming back 'inconclusive' due to what appeared to be a virus which was making the lab equipment unable to find accurate results and that I absolutely needed to be at PENN on Thursday morning for more specialized testing and to see my doctor. It was suggested that this may be mono. "He wouldn't insist you be here if it wasn't important". Oy.

The next day, my sweet mother-in-law drove me back down to PENN for a marathon 4 1/2 hours of testing. I'll repeat that: FOUR AND A HALF HOURS. God bless the phlebotomy team there because they did WORK that day. Every test was unique and unusual. Every one required special instructions. Swabs in the throat. Swabs in the nose. A million needle sticks in veins that, shall we say, just aren't what they used to be. What was becoming apparent was that my body had stopped making red blood cells, meaning that I was severely and acutely anemic.  More than your 'take an iron pill or eat a steak' anemic. This was 'I have less than half the hemoglobin (oxygen carriers) level that I should. This was NOT a relapse. Allow me to type that again: I STILL DON'T HAVE CANCER ANYMORE (is that a sentence?)

The question was: why?

Well, back to the advice to stay warm and the odd mottling on my skin. My team was beginning to suspect that I had acquired something called Cold Agglutinin Disease, which you can go read about here: SCARY (because it's complicated and scary and I'll let the professionals do the 'splaining). Did you read it? That part about lymphoma and more chemo? Yeah. That. The thing is, the lab testing to confirm this requires that the blood stays body-temp warm, which is nearly impossible, in order to sense the antibodies before they precipitate. After a few hours of inconclusive blood tests (and others which take a little while to 'cook'), I was called back to speak with Dr. Porter. He informed me that my hemoglobin levels were continuing to drop to unsafe levels, that they had some suspicion of why but couldn't be sure and that in order to keep me safe I needed to be admitted to the hospital right then. As in, there was already a bed for me on his floor (he was, thankfully, on inpatient rotation). Oh, hey. There's that deafening rushing noise in my ears again.

Nearly three years to the day since being officially diagnosed with leukemia (and exactly three years to the day since my allergist read those ill-fated test results) and here I was AGAIN. To say that I was heartbroken would be a vast understatement. All I could think about was that my students had their concert the next day and that I wouldn't be there. I had fought so hard to be there the day I was diagnosed and made it, and now I wasn't. They had worked so hard and it was going to be ruined. Again. P was going to be sitting by a hospital bed. Again. Christmas was marred for my family. AGAIN.

Not an ideal location for an IV. Not to be dramatic or anything.

Long story, short (hah.), I get admitted and have my IV placed, which the poor nurse had a hell of a time doing (not enough blood will do that...) and met my new benign hematology' team- one of whom startled the bejesus out of me when I realized that I went to high school with him (He is a couple of years older. I suppose it was a good thing that I had my wits about me enough to place face). My MIL stayed with me until P could get there, straight from work.  After giving my full history (sooo an hour later) my team set about trying to both get an accurate blood sample and find me a few units of compatible blood- having what amounts to two immune systems and a history of GVHD makes transfusions really difficult. Funny story: one of the hematologists was trying to figure out how to keep my blood warm enough for this particular test and started talking about filling a large bucket with hot water to place the sample in. He had a very detailed plan for this, much to the chagrin of my nurse, and seemed REALLY excited about this plan. Somewhere along the way he abandoned this idea, or someone told him that putting a blood sample in a bucket of hot water wasn't uh...a great plan, and he returned with several warming packs and some rubber bands. Just a note: there is a such thing as a 'blood warmer', which is like an incubator. So, that.

To be honest, I don't remember too much of the next 30-ish hours (which is how long it took to find, irradiate, leukodeplete and warm the only two compatible units of blood in Philadelphia) because I didn't have enough blood to function like a human. I do, however remember flashes of friends and family coming by with tons of cheer, for which I am so grateful. Grateful beyond words. I remember the image of my loving husband sleeping on a pull-out chair next to my hospital bed. Of his sweet bleary face at 4:30am when the lights were thrown on for vitals (Seriously, STOP DOING THIS YOU SADISTS). These flashes of memory set the stage for the greater realization I had during the next few days on Rhoads 7.  Additionally, in a strange twist of fate, the night charge nurse on my floor was an old friend from high school. In fact, many of the nurses and staff were locals from my area, which made the cold sterility of the hospital much, MUCH homier. T (my nurse-friend) hung out in my room and gossiped when she had a few moments. She assigned me the best nurses, not that they all aren't. She was even the person responsible for the mural on the window of my room. Thank you, T. Thank you.

My nurse J, T and C getting me some blooooood. Look at those smiles:)

Blood. Mmmm.

The mural, courtesy of T, on the window to my room.

Goals. Thanks John.

Another window by T.

It became clear on Christmas Eve after two infusions of steroids, that I may not, in fact, have Cold Agglutinin Disease, but rather some other form of hemolysis (destruction of red blood cells) which may or may-not have ANYTHING to do with having had a transplant. Which led to the questions: Is this GVHD: No.  Would this have happened anyway? Answer: Maybe, and it does to perfectly healthy people when they get a common cold virus. Could this happen to my donor? Answer: Yes. Which just made my stomach turn. This guy doesn't need this shit. I've at least had enough experience to deal with these type of things, I pray that it never happens to him. My team concluded that my RBCs had risen dramatically with the help of the steroids and blood and that if those numbers stayed steady or continued to improve, I could be released on Christmas Day. The odd changes in my vision had improved (though not completely gone away) and my skin hadn't become worse, or really changed too much. So, yeah. My family (and some sweet, sweet friends) spent Christmas Eve and Christmas Morning in the hospital. I feel incredibly guilty for this. What I wouldn't give for those around me to not have this experience. To not soak up so much damn attention.

On Christmas Eve, after my family left, the nurses circled the floor caroling. T was, of course, the brain behind the operation and invited me to join them. This, friends, is what this experience was really about. Remembering the REAL meaning of Christmas. Giving. Love. Sacrifice and selflessness. My religious and spiritual views be what they may, it is impossible to escape this realization. It was an honor and a very special opportunity to be able to lend my voice that night and it is something that took me out of my own sadness and brought me back. Though my students performed without me on Friday, and reportedly did a wonderful job, my heart was aching for not having been there for them. This helped fill that void.  It has been easy to forget, willingly or not, everything I learned in the last year about what is important. When fear and crisis is not at the front of your mind all the time, little things start to take over in importance. In many ways, this was the best Christmas I have ever had. The right balance of humility, emotion, family, loved ones and PERSPECTIVE. Christmas isn't about the traditions, even if it really is. It isn't about the tree and the presents and the TV specials and the cookies (even though it is). Christmas is about the spiritual lesson of gift and sacrifice. This is one of the greatest lessons I could ever have asked to REALLY learn. We all know the story of How the Grinch Stole Christmas. Well, this Cindy-Lou Who had Christmas without the roast beast. Christmas comes, no matter what, it's all about your heart and who and what you make it open to (or grow for).

Waking up in a hospital, on the transplant floor, with patients in the rooms around me that, frankly, may not see very much of the new year, brought me back to reality. Reminded me to be thankful for the blessings of the people in my life and the luck I have had so far. Seeing the families of those patients surrounding them, opening gifts, smiling, is something I will take with me forever. Yes, instead of a Christmas breakfast at my parents house, I had mine on a hospital tray. but I could eat it. And Enjoy it. And open my eyes to my husband. Forgive me if I have become too sappy.

Christmas breakfast.

My nurse on Christmas was, simply put, the most bubbly delightful person I have ever met. Oh, and we share a nearly identical name (Thanks, T!). This is her on Christmas morning and her drawing of what my 'gift' should be. To go home. Which I did. Call it modern medicine, call it magic, but my hematocrit (which is just a name for the percentage of red cells- a more accurate number than hemoglobin at that point) had jumped dramatically over night. So dramatically that my team wanted to wait for the results of my afternoon blood test to be sure it wasn't a fluke. It wasn't. So, around 3:30 on Christmas Day, after opening gifts from my family, my doctor walked in and performed the fastest discharge I have EVER seen. 15 minutes. Here is my family hauling my things out of the hospital.

My WONDERFUL nurse L.S. discharging me.

P is HAPPEEEE

Run. With presents.

Being hopped up on steroids and overjoyed to be home for dinner, P and I ran around our apartment like mad straightening up, wrapping, cooking and laughing. We, together, made Christmas happen in under three hours. Steroids. I tell ya.

P's family joined my family at our apartment for, what turned out to be, the most fantastically wonderful Christmas dinner I could have asked for. I am so thankful that they could all gather with us and that, of course, I was home. I am thankful for the gift of love. For the gift of renewed humility and perspective. I am thankful. P and I had our 'Christmas Morning' the next day, which was just as fantastic.

According to the test drawn on Tuesday, my RBC has stayed steady since Christmas Day, though the actual cause for this sever anemia is at the moment unclear. The 'what happened' is that my body started eating my red blood cells. The 'why the hell did it do that' is a mystery. P is taking me to see my team tomorrow, maybe there will be more answers, maybe not. Either way, the last ten days have been one hell of a ride. Aside from still being a anemic, I am now zapped on steroids again, though not even a third of the dose I was on last year when I went all Staypuft. Steroids make you both feel like hell and like a million bucks. Seroids. Seriously, I tell ya.

When I knew more, I want to say that I'll post here. I probably will. I want to say that I'll write more, but honestly, I hope that things settle back down into not having anything to write about. There is one topic, one person actually, that I want to write about. That deserves to be written about. But we'll get there:)

Whew. Did you read all of that? Holy macaroni. Thank you. No, really. Thank you. For the last 18 months. For however long it took you to read what I just wrote. For being here. I hope that you had a wonderful holiday, whatever you celebrate, with your friends and families and the things you love and cherish most.

Much love, sweet friends.

An ornament on the floor tree, which OBVIOUSLY won the hospital decorating contest.

Peek Behind the Curtain

So, hey.

It's been awhile. In fact, it's been something like six weeks since I've written here. This is not an indication of the mundane-ness of life around here (I've said it before, I'll say it again: my blog = I get to make up words).  To the contrary! The last six weeks have seen some major awesome sauce.

At the moment I'll save the wicked long post for early next week and just say this: tomorrow I'm catching a train to NYC to soak in some FD love and cheer on Team FD at the NYC Marathon. Though it seems that cancer is still a dominant feature in my life, and I'm alright with that, MY cancer is not. Still in remission, even if I am still majorly screwed up for it. Lo, that's for another night.

Good to see you around, friends. Oh, and I have a guest blog in the works so be sure to stop by again soon for that too (See Hot Lips?! I promised:))

For now, stay cool and know that I send you MUCH LOVE!

Gratitude List

Last year, on my 25th birthday, I was laying in a hospital bed, feverish and in pain (and not just a little angry about being there). So I wrote a list of the things I was grateful for, one for every year I've spend kicking around this planet (can be found here ). The exercise proved to be one of the most meaningful and heartfelt pieces I've ever written. It allowed me to openly express my deep gratitude to those who ought to know and, at a time when I was feeling decidedly unsure of my future, reminded me what a blessed life I lead. 

Today, on my 26th birthday, I will start my day doing the same.

*I am grateful for my husband, who stood by me this year, at every doctor's appointment and infusion, patient with every meltdown, hopeful with me for our future together and the life we can now build. I love you.
*I am grateful for my loving parents. You uprooted your lives to support P and I and were always there when we needed you most. As you said 'you were there the first time I was born and can say you were there the second time, too'. I love you
*I am grateful for my brother and sister who came and hung out with me while I was stuck in the house, texted me about daytime TV, stayed calm through it all, become better friends (and climbing partner) than I could ever hope we would be. I love both of you.
*I am grateful for my Nan, with her calm but direct way of knowing. For every note she sent (one for every day I was in Houston) and every phone call, skype and blog comment all with the best advice and tons of love. I love you, Nan.
*I am grateful for my In-Laws, that we share such a wonderful relationship. You are a blessing to us and everyone you meet and you raised a fine young man that I am proud to call 'husband'. I love you and Happy Anniversary.
*I am grateful for my Aunts, Uncles and Cousins (from both sides), for coming to see me in Houston, writing endless cards and letters, commenting on here, ringing me on skype and calling to give love and support. For being positive, loving and generous, always. Oh, and reminding me that I 'don't have to wear that wig around us'! I love all of you.
*I am grateful for the community of teachers, parents and administration with whom I work. You were endlessly supportive and enormously generous with your time, effort and caring last year. You welcomed me back to my classroom with huge smiles which melted away the anxiety and a big ol' chocolate cake to sweeten the deal even more. Thank you
*I am grateful for my students. Your cards,  drawings, songs and photographs (of which I've kept every single one for nearly three years- come see me when you're all grown up and I will show you how much you meant) carried me through and your bright smiles welcomed me back. Your love and kindness has taught me more about how to be human than you'll ever know. Thank you, I am thrilled and honored to call myself your teacher again this year.
*I am grateful for my overwhelmingly wonderful friends, especially the ones who have been part of my life for a long time. Your steadfast caring and love taught me so much, I hope to be as good a friend to you as you have been for me. For the benefits, the cards, the visits, the days walking around the mall because that was all we could do, the text messages, for everything. Thank you and I love you.
*I am grateful for new friends who became like old friends so quickly. In the face of your own struggle, you reached out. Watching you heal and flourish and fight and WIN has been humbling and an inspiration. I hope to pay back the love and support to you tenfold. I love you and your families.
*I am grateful for those who fell away over the last few years. You taught me patience and forgiveness. You taught me how to be a better friend and give more of myself in your absence. Thank you
*I am grateful to have known too many sweet friends who are now resting with angels. Craig, Sarah H., Olivia, Montreal: your beautiful lives set an example for what is truly important. Love and family. Thank you for sharing a small piece of your lives with me, I miss you.
*I am grateful for the nurses who helped heal me, both at MD Anderson and at UPenn. You save lives and you do it with compassion. You take care of our bodies and our hearts, sitting by the bedside listening, coming in with a funny story, lingering for a moment or two when you see we're lonely.  Thank you for what you do and who you are
*I am grateful for my doctors and nurse practitioners, both northern and southern. Your dedication to healing and to making a difference shows. You are compassionate and witty- not something many in medicine can claim. Thank you for your hard work and vast knowledge.
*I am grateful for the scientists, researchers, pharmacists, nursing assistants, interns and secretaries who keep the whole juggernaut moving and bring about the changes that save lives. You are often forgotten but immensely important pieces of the puzzle. Thank you for saving my life.
*I am grateful for First Descents and the volunteers, counselors, donors, staff, board members, chefs, guides...the list goes on...who dedicate their time and hearts to this organization. You do an indescribably important thing. Thank you for teaching me how to live again, giving me a place to belong and opening up an enormous world of possibility and adventure I didn't know I was missing. Thank you, thank you, thank you.
*I am grateful for my FD family from Camp BAMF. In a few short days you became closer friends than some I have known for years. You came with your hearts open and smiles wide and I am so honored to have shared that experience with you. You shattered the illusion of the broken cancer patient and soared sky high, cheering everyone else on along the way. You are stunning and, as I said, AWEsome. Thank you and I love you
*I am grateful for the practice of yoga, that it was there when I needed it most and stayed there and gave me the tools to get through the rough times and rejoice in the good times. For giving me my body back and allowing me to love it again. It truly was the cushion to fall back on, reminding me to breathe and lead from the heart.
* I am grateful for the generations of yogis who came before me who learned and shared their wisdom.  For the teachings of old and new, the principles that guide and the traditions that sooth and heal. For reminding me that the learning is never finished, there is always more.
*I am grateful for my teachers. You share you wisdom and open your heart. You are passionate about what you do, and it shows.  To my yoga teachers, thank you for your generosity, your encouragement, your warmth and your perseverance. To my harmonium teacher, of which I also thank my yoga teacher, you brought the music back out of me and opened a new world of sound that will hopefully take many lifetimes to explore. To my dance teacher, you helped me unlock my body again. Taught me to feel like a woman and move in a joyful way. Thank you. I am humbled to be your student.
*I am grateful for the sun which warms me, the grass that supports my practice or a nap, the sky that is always promising even if I can only see it through the window, the forest and mountains that call to me and were the place where the real healing started, for the ocean which sooths, the air that sustains me, the rain which washes everything clean. This is a wondrous world and I and grateful to have more time to explore it.
*I am grateful for the small moments. Moments of unexpected but memorable happiness. People can be so good to one another, if given the chance.
*I am grateful for those of you reading this. I grateful for your time and for your kind comments which often move me to tears. You gave me the opportunity to share this journey and learn about myself in the process. This is priceless. Thank you.
*I am grateful for this body. The way it can move, support, heal, change. That it is perfect in its imperfections and I love it. I promise to take care of you, body, because you have taken care of me.
*I am grateful for this beautiful, beautiful life. That I get to live it, breathe the air, dream, explore and love and experience enough to be grateful for is amazing. 
*I am grateful for my Donor. For the sacrifice you made so that I may live this beautiful life. I think of you every day and pray that you are also living a beautiful life, for you deserve at least what you gave. Thank you, from the bottom of my heart.

Much, grateful, humble love, friends.

My writing has been sparse as of late, I'll explain in another post but know that everything is wonderful. I hope you are too.

Awake My Soul

Every so often a song comes along that I love so much and speaks to me so deeply it is nearly embarrassing. This week has been, for want of a better word, intense. For now, while I catch up on much needed rest, join me in loving all over Mumford & Sons.

A First Re-Birthday

It seems appropriate to me to begin this post like this:

Dear Donor,

I don't know the kind of things about you that most people think define a person. Those first-date-basics bits of information like favorite book, where you grew up, what you do for a living, if you prefer cats or dogs  (though I have a suspicion that you like both). What I know about you, however, is something that many people will never have the divine opportunity to learn about another person. The thing I know about you is something that can only be found in the most special sort of person and can only be found out by a small group of people in a very extreme situation. It is hidden, illusive, maybe not present at all in some. That thing is the ability to save a life.

You, dear donor, saved my life one year ago today. In fact, you have saved my life every day, for the last 365 days and for every day for the rest of this life that this humble heart beats. You said "Yes", first in sending in your swab to the National Bone Marrow Donor Registry, and then again when they called you and said you were a match. You said "Yes" when you got out of bed on this morning one year ago, made your way to the hospital, signed those consent forms and started anesthesia. You said "Yes" in a situation where many have said "No, thank you".  This small word has made a world of difference. You have selflessly, thanklessly (for now) given hope, faith and love to a depth which cannot be described in words.

 Your gift of life has given me another year on this beautiful earth, a gift that is nothing miraculous, glittering and awe-inspiring. You gave a gift of another year of loving marriage, of joyful friendship and of wonder at the miracle of this life.  The things that your life-force has allowed me to experience in these last 365 days are nothing short of stunning.  You have been with me in every moment in every breath. You are in my veins and so is my gratitude for your sacrifice.

 To your parents, who raised a man who would give such a gift, I say thank you. To your friends and family, who stood with you in this choice, thank you. To whomever it was that inspired you to join the registry, thank you. So strange that such small words: "yes" and "thank you" can hold so much weight. I look forward to the moment when I can look into your face and say with all my soul, "Thank you". Maybe a small fraction of my passionate gratitude will show.

It is my prayer tonight, as it has been every night since transplant, that you are safe, happy, loved, healthy, surrounded by smiling faces and living a life that you love and fulfills you. I pray that you have had joy this last year, for you gave that to me. I pray that you will somehow know, through the universe, that the woman that you saved loves you.

Thank you, dear donor. Dear 36 year-old-male donor. When I asked my medical team one year ago where you are from, they told me that you are a resident of earth. It seems certain to me that you are bound to be a resident of heaven as well.

Love,
A very humble recipient


Deciding what to do to mark this day has been difficult, I am thankful, in fact, that Mother Nature made the choice for me to stay in. Celebrating seemed...inappropriate. I didn't do anything to deserve a celebration. My donor? My husband? My family? My friends? My community? My medical team? You, those reading this? THOSE are the ones deserving of a celebration.

Giving love and support is deserving of celebration, not laying in a hospital bed and following doctor's orders. Tonight, with tears streaming as they have been all day (and most of the week), I toast to my donor, husband, family, friends, community, doctors, nurses, pharmacists, medical professionals. Without them (you), I wouldn't be writing this. I owe my life to you. There are a thousand other words that I could write here about the deep emotions that are welling in me but I will leave it at this:

Thank you. Humblest, deepest, most radiant thanks. This year has been one of wonder. May you be safe and loved and know that you have made an enormous impact on this life.

Much love. Always

When the Earth is A-Rockin'...

I don't notice a thing.

Fun fact: When you spend nearly a year with tremors and shakes from your meds, you don't notice earthquakes. Who knew?

The cats are pretty freaked out though...if I can coax one out and snap a picture of their puff, you KNOW I'll post it.

Living STRONG

This weekend P and I were given the opportunity to volunteer at the First Descents tent at the Philly LiveSTRONG Challenge.  

You know, the Universe works in beautiful ways: this weekend marked one year since I started chemotherapy pre-transplant. One year ago, I was sick as a dog and laying in a hospital being pumped with poinson. I was unsure of my life in the short-term, but never imagined that P and I would be here one year later. This weekend we were smiling, laughing, and soaking in the sun (OK, not really, I was in a tent I PROMISE DR.PORTER!) and savoring this life. It was and honor to be representing First Descents and even better to do it at LiveSTRONG Challenge, surrounded by strong and inspiring survivors and supporters.

 I will not lie here, I am a huge fan of Lance Armstrong and the LiveSTRONG Foundation. His book, It's Not About the Bike: My Journey Back to Life is one of the only cancer-y books that really, DEEPLY spoke to me (no pun intended). Seeing him today, in person, ON HIS BIKE, was an experience to cross off my bucket list.  Also, please check out Movember, a moustache growing charity event held during November each year that raises funds and awareness for men's health. We spent the weekend next to these fellows and what they do is so, so important.

Setting up!

Another FD camper, Dobo, stopped by after running the 10k. Great to meet you, Dobo!

First Descents Tent

Was so proud to have a yellow Survivor card to wear

Lance Armstrong addressing attendees and racers before the 100 Mile race start.

100 Milers

Lance, kicking things off.

Ominous clouds rolled in, bringing thunder and lightening and ending the event a few hours early.

Monday morning, Montreal will be laid to rest. Tonight I pray that his family finds comfort. My heart will be in Texas tomorrow.

Much love, friends.

Rest with the angels

My friend and CML transplant buddy, Montreal, who sat with me in clinic, messaged late at night to check in, laughed with me when I fell on my ass (and helped me back up) and reached out to so many in the Young Adult community at MDA, went home to heaven this morning.

I....there isn't much that I can write here that can explain how heart broken I am for him and his family and loved ones.

He was a special young man and I am grateful, to say the least, for the moments I was blessed to share with him.  He is whole now. Healthy and happy. A spiritual young man who is no doubt safe in the Kingdom of Heaven.  He was not well the last time P and I saw him in Houston, I pray that he is comfortable now.

Thank you, Montreal. You were a good friend and a strong fighter. You reached out to so many and were well loved. Rest with the angels, friend.

This just never gets easier.

Penny for my thoughts? Oh, no

These late summer days and hours, moments even, hold more leaden weight than I could have foreseen.

Just a day or so ago I commented to a friend that I hardly realized that my 'First Birthday' was approaching as things feel so darn...normal...around here. Appropriate, also, that this conversation took place after a yoga class where the theme was approaching life and practice as a newborn, to the fullest, without limitation.

This morning, after doing my morning Sun Salutations (650..350 to go!), I switched on the television for some noise while I got dressed. As fate would have it (I will not call it luck, though maybe I should...), the boob tube was already tuned in to VH1, which was playing music videos. Who knew they did that anymore. Anyway, my timing being as impeccable as ever, this was the video that began as if on cue from my remote (go ahead, watch it. grab some Kleenex):



Right. After I stopped sobbing, I turned off the TV and sat down to reflect. A strange word, that. 'Reflect'. This song reminded me so much of Sarah Chidgey. As in, I could see her face again. Hear her. I'm not typically one for this sort of thinking but, and please don't judge here, I felt like there was a reason why I switched on this song when I did. That I thought of her nearly a year to the day from the moment I met her. During my reflection I became honest to myself that, as much as I pretend to be tough, pretend that I have strength, that I was maybe never terribly fearful except for a few moments of absolute weakness, I am deeply, DEEPLY terrified of dying young. Not even just fearful dying, that in looking into my reflection I realized that I didn't want to have this life severed before I could make a mark on the world. Sarah did that. Sarah is still doing that. There is a great wide world of life that I've yet to see and do, taking these memories with me and giving. Paying it forward and back and onward. To make a difference in this world that has nothing to do with being 'known'. That has to do with being a servant and being unknown but giving to make a change that is known.

I think back to this day last year and of Sarah plopping down next to me in that waiting room, giant bag in tow. Of her voice, her laugh and her smile. She had a presence that led me to continue contact with her and reading her story. Her words at the end have changed me forever. More than the pain of my CVC insertion one year ago, these are the things that I remember.

As a patient, the world revolves around you and your needs. My memories from this time last year are not of my sister's 21st birthday, of spending sticky summer nights under the stars with P or going to hear my brother play. They are of my own pain. It is a selfish existence and one that I am keen to both leave behind entirely and also bring with me. My heart turns from my own self-preservation back out to give love. To give thanks. To bow my head in awe and open my arms in surrender to the world.

Tonight, I wonder what my donor is doing and thinking. It is difficult to write here how the lump in my throat feels rising when I think of him and what he did. Of the humility I feel at the year of life that was freely given by a stranger. That, my sweet friends, is a difference made.

I may be the only teacher...

who gets really excited whenever a back-to-school commercial comes on TV.  I can smell the new notebook paper and dry erase markers now...ahhhh.

Parents, you're not alone. This teacher is also counting the days until the first day of school (30).


shhhhhhhhhhhhhhh...don't tell the other teachers...they don't like their cages rattled


Is that baaaadd?

Untold Stories from Cancerland: Jersey Shore Edition

It has occurred to me that there are a number of stories I've never shared from my extensive time in Cancerland. The time has come. This might become a series. 

There are very few television shows that I will go out of my way to watch. Jersey Shore is one of those shows.

Last year, while I was in-patient at M.D. Anderson recovering from transplant and agrowin' new cells, I watched Jersey Shore on loop (MTV was one of the few channels that came through clearly on the television in my room). The nurses, proper southern women, questioned this choice extensively. What did I tell them? That the accents of the Jersey Shore clan reminded me of home. Yes, all of us who grew up going 'down the shore' know that they weren't really at the shore (North Jersey ain't the Jersey Shore, yo) AND when they were in Jersey they were in NORTH (Nort') Jersey, not the correct South Jersey. DelCo folks, y'all know. My sister, who worked as a bartender at a college bar near her school, hooked me up with Deena's autograph when she came for an appearance. It has a position of honor on my fridge.

True story.

Thus concludes Untold Stories from Cancerland, Episode 1: Jersey Shore.

Stats and Pills

Every once-in-awhile I check my 'blogger stats' to spy see how you all are finding me and where you are (no stalker). The best of these stats are the Traffic Sources which help me get an idea of what google and bing searches are bringing up this blog. Usually, these searches are for the name of this site, for Sarah or Craig's name or for cancery things. Today, one popped up that made me snort with knowing laughter: 'how long before ambien knoxka me out?'

Soon, my friend. Very soon.

(This is exactly why I stopped taking that stuff. Some of my writing from last fall is...uh...incoherent at best, but I probably don't have to tell you that.)

UPDATE: OMG SOMEONE HAS GOOGLED 'SEXYBALDLADIES' THREE TIMES AND COME UP HERE. eeeeeeewwwwww (not at bald women being sexy but at THIS being the spot someone ended up. thrice.).

As I creep up on my first re-birthday, it seems that my pill case is creeping toward empty and my body is creeping back into shape. Aside from choking on fewer pills twice a day, the happy side effect of allowing me to push my limits again is helping me feel more like myself than I have in nearly a year. For months my blood pressure medication, prescribed to remedy my sky-rocketing steroid-induced blood pressure, has made strenuous (read: anything that gets my blood pumping and  endorphins high) nearly impossible. It was like I was fighting my own body. I love a good sweat and the feeling of making my body work and missed this feeling hugely. Since being taken off of this med, my blood pressure has been stellar (considering at my highest dose of steroids I was hovering at 152/110- yeah, you read that right) and I can start really working out again.  It may sound ridiculous but I was also becoming frustrated and self-conscious of my elevated resting heart rate, too. The day I had my port put in, my resting heart rate was around 60. One month after transplant (and for the next eight months) it was up near or over 100. Now I'm falling back into the 70s, praise spaghetti monster. (we won't even go into the loss of nearly all of my muscle mass...I can't even look at pictures taken within the last year without feeling embarrassed). Oh, and my face is really starting to look normal again. That moon-face thing was a real bummer. It took like, four times as much moisturizer to cover that thing.

Though I still haven't learned my lesson when it comes to 'too much, too soon', coming back to yoga at full force, adding dance classes and the occasional run and scampering up rock walls with my brother has felt FUCKING AMAZING. The school year is approaching and I've been fearing that the physical requirements of my job would prove to be too much for me. I expect to  be fatigued during the first few weeks or months of this academic year, but by pushing it now, and building up my stamina, I hope to come back to work with enough energy to avoid taking more time off.   Only time will tell.

In all honesty, I was knocked down a few pegs last week after my latest IVIg infusion and my one year immunizations, which brought three+ days of pounding migraines and painfully stiff muscles (taking an extra few pills to counteract this hasn't bugged me too much though). The migraines were thanks to the IVIg but the general feeling of stiffness and physical pain is a direct result of those shots. I tell ya, for all the times I've heard a parent say that their toddler is fussy due to immunizations, I've never stopped to consider that the fussiness had nothing to do with the puncture wound. It's from the immunization itself. Thankfully, most people don't remember this time but now that I've lived through it twice I can tell you that the fussiness is because your kid is fucking miserable. MISERABLE. Nearly a week later I'm still feeling the effects. Hug your baby and give 'em a lolly.  Forgive them for screaming. Let them sleep in. Trust.  P has been a saint this week as I reverted back to toddlerhood from the pain. God, I love that man.

Much love, friends. Especially to a few sweet friends who really need it, xo. Wishing you joy in these last few weeks of summer:)

Totally Urgent Request that Has Nothing to do With Cancer

I am posting this URGENT REQUEST on behalf of my sister, Liz Slavin, on the off chance that someone reading this can help:

Phantom Regiment Drum & Bugle Corps is in desperate need of a housing site in the Philadelphia/South Jersey area for August 4 (late evening)-7(early afternoon). They are well known for stellar site maintenance and care and will happily provide necessary recommendations.  If possible, they need a space with two fields (turf or natural, no lines needed, they will apply and clean up their own lines if there are none), space to park several tour buses, showers and an indoor open area for sleeping/rehearsal (gym/commons/hallways ANYTHING). 

They will make some noise on the field, but it's a damn fine noise to listen to:) They have shared space with athletic teams and summer school programs and are very nice neighbors!

If you know of a space or have access to a space, please contact:  

Allan Dekko at 702-325-5527 or dekko@regiment.org

THANK YOU!!!!

For more information about Phantom Regiment, please visit http://www.regiment.org/ 

Today - 365

One year ago today, July 27th, 2010, I received the life-changing phone call that a donor had been confirmed and that my transplant date was set. All of us have those personal anniversaries, the days when something significant happened (maybe only to you, maybe to those around you) and you can recall with unnerving clarity everything about that day. This day impacted my husband, family and friends, not just me. The goings-on of this day one year ago are more clear in my mind than days only a few weeks ago. Where I was, who I was with, what we were doing. I remember sitting in the back of my mother-in-law's car receiving that phone call. Feeling a mind boggling combination of extreme fear and hopeful excitement.  Calling my parents. Calling Phil. Calling the long list of friends and family. Writing here. Crying.

One year ago my donor-angel confirmed that YES, he would donate his marrow to me, a stranger, and confirmed the date of his surgery (for new readers: he consented to a traditional marrow extraction via 100 holes in his pelvic bone- 50 on each side- as opposed to apheresis stem cell extraction via blood filtering), the date which would give me life back. Or, perhaps, gave me a new life entirely.

Over the last 11 months I've thought quite a bit (understatement of the century) about this man and his decision. About his family. There are moments when the reality of his gift, and the sacrifices he and his loved ones made to give me this gift, become overwhelmingly clear. I would be lying if I didn't also share that there are many times when I simply cannot think about it. Can't take it in. That I feel unworthy of such a sacrifice from a stranger and that I am absolutely indebted to this man and the universe which set this all in motion. Embarrassed, almost.  Yeah, I know, that sounds bizarre. Why would I feel embarrassed about my donor's choice? Well, because, as I said,  I don't feel worthy of this kind of gift. Honestly, most of the time I feel incredibly uncomfortable with the generosity and kindness of those in my life, of which P and I have experienced to the max these last few years. I feel so extremely grateful that it aches inside. Why was I given a second chance? Why do I have the honor of calling these people friends and family? Why have we been afforded such love and kindness? Why me and not someone else in my place?

There are many times I've written before asking the question 'Why me?' and curtly answered, 'Why not me'. Well, I'm not certain that this is the correct answer here. In this circumstance, I have no answer, only the intense feeling of obligation to pay this forward. That maybe, just maybe, this is a call for me to dedicate myself to supporting others on this terrible journey.  Some of those 'others', I am devastatingly sad to say, are friends. More importantly though, I hope to give support to those I will never know.

As it stands, my Team FD has, with the stunning generosity of nearly twenty separate donors, exceeded the initial goal of sending one FDer to their first camp. That sum was $1,000. Today, total donations stand at $1,550. Amazing. For my part, with my steadily healing feet firmly under me, I have completed 300 Sun Salutations. This affords me about five weeks to reach my goal of performing 1,000 Sun Salutations before Labor Day 2011. I was never great with math in school so...let's just say I'll have some darn impressive upper arm muscles to debut at work...:)

Thank you, Donor.  I've hardly the words to express what today feels like. I hope with all my being that in a month's time I will be able to express my gratitude in person. Tears, I think, can say so much more than words on a page (or computer screen, as it were).

Much love:)

hyperpyrexia

I think that word has something to do with a dangerous rise in body temperature but I'm too fucking hot to look it up. What I do know is that when I plugged 'heat related delirium' into my search bar, that's the word that Google spat out. So sue me for being lazy, I think the sun ate me today (if you live...well, apparently anywhere in the US you're probably feeling the same way).

Delirium is precisely the word I would, if pressed, apply to today.

This morning P and I drove swam through the swamp air to UPenn for my 11 month (holy shit) check up with Dr. Porter. It really tells me something when THAT isn't the most interesting part of my day. It tells me that the universe works in beautiful and completely ridiculous ways.

Let's get the boring stuff out of the way: all is well on the bone marrow front (fist pump). My counts are relatively stable, I'm being taken down to a minuscule dose of steroid (1mg every third day) and taken completely off of Detrol (turns out my episode last week was not that virus, just a simple bladder infection) and tapered down significantly on a mouthful of other drugs. Next Friday I will receive (after some intense negotiation) all of my "1 Year" immunizations, the same ones a baby would receive, and another infusion of IViG to boost me up. My feet are healing up and I have enough hair to make an actual hairstyle (OK, so Dr. Porter didn't tell me that last one).

Now for the interesting stuff. A deeply loved and respected friend, someone who has been meaningful in P's life and his family's lives (and for a long time mine too) is now receiving cancer treatment at UPenn and happened to be having an infusion this afternoon, just after my appointment ended. Because this person is like a love magnet, powerfully drawing you in with their positive and beautiful light, not to mention just a damn good time to be around, I asked if I may stick around and keep them company. They accepted and, my god, what a blessing this turned out to be. One of the greatest lessons I've learned over the last few years is that experience and knowledge is always a choice. Things can happen to you, or you can experience them. You can see things, or you can open your eyes and heart wide and take them in. Those that possess the greatest wealth are the ones who have done this and THESE are the people who have the most to teach. They teach in every moment, in the smallest and greatest ways.

  Sitting with this friend today and listening to them talk about their path, their outlook, their experiences, watching them laugh while poison (a heeling poison, somehow) is pumped into them, smile with family members and be completely open, left me absolutely in awe. This person is the embodiment of both ferocious fight and absolute surrender. They are stunning in so many ways and have taught a thousand lessons in only a few moments. These hours spent sitting by them today are hours I will cherish forever and that I am honored to have been given the opportunity to experience them.  There were a few moments today, while listening to their stories, that I could feel their impact on my life, on how I want to live my life. That is...well, that is a damn special thing. Writing this last paragraph has me emotional and feeling protective of these memories, so I may stop here.

To wrap up this post, because this year has been too effing serious to leave blog posts on an emotional note all the time (Dancing Dror being the exception...though I'm fairly serious about that...), I will share with you the mindboink that happened while hanging out in a waiting room today. Ready? No, I don't think you are. If you choose to skip this part, good. I'll let you know when to stop scrolling down. Read on if you dare.

I will first draw your attention to this picture:

"Laura, those are just chairs and some dude's legs, what's your damn problem?"

I WILL TELL YOU WHAT MY DAMN PROBLEM IS.

Notice, friends, the gentleman at the top right of this photograph (that is my left leg on the bottom). This gentleman, carrying a stack of papers, a bag of patient-y stuff (binders, pill bottles, magazines) and a few other random things, sat down a few seats away while I was waiting for my friend. He quickly struck up a conversation. Normal enough, yeah? Yeah. It became very clear VERY rapidly that he was thoroughly zonkered out of his mind on, what I presume to be, pain medication and this pain medication had the wonderful effect of lowering this man's inhibitions...significantly.

Sure, it started innocently enough. He informed me (the only person sitting within conversation range) of the various VERY TRUE conspiracy theories currently ruining the world. The standard stuff we all know about, delivered in a deluge of totally coherent sentences: something something Arabs something something 18th Century scrolls something Hitler mumble NIXON. No big deal. Although, he was really mad about Nixon. Look, I've spent my fair share of time whacked out on pain meds and this gentleman had a brand new PICC line in (and we were in a damn cancer center) so I'll totally understand all of this (I shared drunken college stories with my nurses on pain meds). However, friends, it is what happened next, or rather what I finally noticed on the empty chair next to him, that takes the crazycake.

On that chair, with his stack of papers, in the middle of a busy waiting room, on a sunny Friday in July, looking at first no more menacing than a hamster in a top-hat, was a blue-capped specimen cup. A blue-capped specimen cup unmistakably and containing this man's spunk. Yes, his jizz. Baby-batter. Sperm.

I'll wait right here while you process that.

Ok now? Good. Try as I might, I do not think that I managed not to react to this, though if I did, he didn't notice. He was far too angry about sidewalk chalk, bless his heart. So, you know, there it sat. There he sat. There I sat. The group on the other side of the room grew very quiet so clearly we were all in this together. At this point the good gods of the universe told him that the cup of goo would really punctuate his point (and after all, why wouldn't it) so he scooped it from its throne and began waving it around in his hand again as if it were a mere can of cola.  This is the point where I made the very important decision to take a super-stealth picture, because, well, basically it was all I could do at that moment. You're welcome. In fact, you can even play a really fucked up version of Where's Waldo, because it's in there, dare you to find it.

After some time of this (who knows how long, time tends to slow when these things are going on), a nurse RAN over (I think after his daughter/niece noticed his chosen presentation tool), snagged the cup and his paperwork and bolted away. He then mellowed out and started leering at the carpet. At about this time my friend showed up and I suppressed the memory until I could post it all over the internet. 

This photograph required the advanced iPhone technique of pretending to text message while actually taking a photo and not capturing this man's face or giving myself away and upsetting him. Please understand that I have an enormous amount of empathy for what this man was probably going through today BUT I can't make this shit up, people. Tarantino couldn't write this shit. That is life in the cancer center trenches y'all.


STOP SCROLLING IT'S SAFE NOW:)

On a completely different note I would like to send a big wave of love and positivity to Sarah D. down in Houston, who is twenty-some days post transplant and kicking butt. Much love to you, friend:) Also, a massive 'thank you' to the universe for the fact that my Nan is doing a-OK after a scary medical moment last week. Gratitude and love abounds.

Thank you, friends, for following with me through this journey and leaving some of the best encouragement and advice I've ever received.  The next month may prove to be exceptionally emotional as my first 're-birthday' approaches, mostly because I know the time when P and I can thank my donor in person is drawing closer. It's a breathtaking idea...

Much love and STAY COOL!

This is really important

UPDATE: I FIGURED IT OUT AND SUBMITTED. zomgicantwait.

If you are looking for a post with substance, this ain't it. But it is a post of awesome, so there's that.

 I just ordered THIS  (yes, it's a thing and yes it's real and yes it's amazing) and it may be the best $5 I've ever spent. Ever. Word to the wise: this is what happens when you spend excessive time alone, drugged up and on the internet. You have been warned (or encouraged).

BUT WHAT SHOULD I ASK HIM TO WRITE???

OMG please help me.  This is something which will be cherished forever and ever. And obviously posted here.



This is so MUCH LOVE

Didn't like the movie Groundhog Day...

Errr, hi.

Sorry, life, it seems, is really getting in the way of being sick these days. Instead of finishing posts here and sharing my nonsense with you, I've been out doing any number of things. Hanging in the Poconos, playing arcade games (remind me to tell you that I lose my BLOODY MIND over arcade games), buying rock climbing shoes,  rock climbing (oh yes, ROCK CLIMBING), hiking, taking belly dance, playing piano, squeezin' harmonium, going to baseball games, going to the movies (go see Horrible Bosses and Bad Teacher, like, now), going back to my classroom (HOORAY!!!) and generally having a damn good time.

Seems today, though, that the sick has crept back in. Now, I don't really want this to be a place of all "waaaah I had a crazy extreme thing happen to my body less than a year ago" BUT...well. That.

Remember that time I peed my bed in my fucking sleep? Yeah. Me too. Let's just say, for the sake of transparency, that I had to buy fucking Poise pads, start ANOTHER antibiotic and get a new Rx for Pyridium today. I'm over here praying to all things white cotton and holy that this is a simple UTI and not that motherhumping virus again. Bill Murray, keep your damn groundhog day. (In other news, how many people can say that they've written about Poise pads, wizzing the bed and Bill Murray in one paragraph? Methinks not many!)

Bonus fun: While rock climbing is effing baller fun, FD was AMAZING and I've been drooling over real estate in CO, this new little addiction has done one hell of a number on my toes. They're all red and swollen and ouchy, having never really healed correctly from when my feet swelled up inside of my rented climbing shoes at FD and then I climbed on them for like, five days.  It ain't pretty. Tomorrow, I get to visit a podiatrist first the first time in my life who also happens to be the first doctor in recent memory to make me wait more than 48 hours for an appointment (2 weeks. 2 WEEKS). I better be a foot model for Sally Hansen after this jawn.

Anyway. Sorry for the complain-fest, I'm just a bit miffed at feeling crappy again. Call me spoiled. Aside from being painful, these banged up feet have been keeping me from reasonably practicing yoga (not counting handstands, those don't hurt my toes!), most importantly my Sun Salutations. At the moment I'm stuck at just under 200 (192 to be precise) so I need these toes fixed fast!!  I would like to share, however, that I am crazy excited that my fellow FDer Rockstar Sissy has joined Team FD 1,000 Sun Salutations along with my good friend and partner in elementary education-related crime, Julie! So much gratitude you two:)! OH, have I mentioned that we have broken the $1,000 mark? 'Cause we have! Which means that there is a survivor or fighter that gets to attend a camp now!!!!! Only through the extreme generosity of donors can these programs exist, and this program is so, so special. A huge burst of love and gratitude to our donors for supporting us. We're not done yet! Maybe TWO campers can go....:)

Although I'm extremely pissed off (no pun intended) about being icky sicky again, there is one thing that happened today that I don't mind repeating over and over again. Today was P and my second wedding anniversary. He has been here with me through absolute hell. Loving, gentle, steadfast. Absolutely fulfilling his vows. He has told me I'm beautiful with no hair and tubes hanging out of my GvHD-ed body. He's endured countless flights back and fourth, weeks apart and alone, all of the same stresses and strains the I've been through. In many ways, much more. Without him this past unbearable year would have been impossible. He brings love, so much love, that it almost aches.  It is hard to believe that two years ago tonight we were married, kicking up our heels in the summer air with our nearest and dearest. Eight years ago he took me to my prom (we weren't dating...yet) at a hotel in the city, two years ago we spent our wedding night there, last night he brought me back and it was perfect. That was just the beginning of so many treasured memories, we have a lot of living yet to do, my love.

I love you, Phil. Now and always.

Door Prize!

Thank you to Cubbie (Kevin LaCrosse) for these fantastic shots of First Descents camp B.A.M.F. in Estes Park, CO.



Once I figure out how to make one of these slide shows of my own, I'll post another video with my photography skillz (or lack thereof) along with my long-overdue entry.

This experience had an extremely profound impact on my healing and on my view of the importance of programs like First Descents in the young adult cancer survivor community. So profound, in fact, that I came home and promptly dedicated myself to a Team FD Challenge to raise the funds for another young adult to attend this program, a sum of roughly $1,000. My Team FD Challenge is to perform, at a minimum, 1,000 Sun Salutations (go HERE for an explanation of what the heck that is), one Sun Salutation for every dollar donated to my team. If we raise $3,000, guess who is doing 3,000 of 'em...THIS GIRL! At present, I've performed 40 Salutations, one day's worth, dedicated to this cause and have roughly 280 more to go before I'm caught up with the generous donations from the last few days. You bet I caught my first donation's worth of Sun Salutations on camera and you bet it's going to be posted on here for all to see.

For information about my Team FD Challenge, please visit 1,000 Sun Salutations.

Much love, dear friends.

A raincloud.

It's been a wild week. I've found myself stuck in my FD journal, the one which I jotted things down in while in Colorado, and am finding it hard to pull myself (and my writing) back together. I am very sorry for those who are waiting with baited breath to read about this adventure, it will come when it is ready. As a door prize I'm going to post a slide show after this post of photographs taken by the camp photographer (with photogs permission, FYI) during that week juuuuussst so you don't think I've made the whole thing up. In keeping with my promise to remain honest here, I will share with you instead what I've been preoccupied with these last many days. I'm a touch ramble-y tonight, this will be a flood of thought

I cannot, for all of pain and sorrow and loss it has caused, be angry at cancer.
 
This sounds insane, no? It was a moment of striking clarity, and healing too, this week when I realized that I am not angry at cancer. I can't even be a little pissed of at it. Not even a bit.

Maybe this is why, even though I've stitched my own version into fabric which sits on display in my living room (and these words were extremely therapeutic at the time I spent 4 hours stitching them), I can't feel an exceptionally strong connection to the 'Fuck Cancer' mantra anymore.  Please understand that I know that this is a very popular battle cry among young adult survivors, and is exceptionally healing for many, hell it was for me too. The Stupid Cancer logo for I2Y, an organization I hugely support, is a hand giving the bird. I love the word 'fuck' and I am not particularly fond of cancer (duh.)... I'm absolutely certain I've said 'fuck cancer' at some point on this blog and MEANT it...so, L. what gives now?

Well. Cancer is, by its nature, entirely random. It does not seek out individuals to break down and destroy. It cannot. It is just a (sinister) collection of cells who have lost complete control. These cells do not know the person they are living in. They have no idea of this person's actions in the world, good or bad. They were not set into this being on purpose by any greater power, at least I don't believe they were, for any reason.  They simply don't know that they are causing pain. They are doing what all life is trying to do: live. Multiply. Building cities in our bodies. Populating and spreading.

Are there risk factors, actions or circumstances or crazy inherited genetics that can increase the likelihood that you will get cancer? Viruses? Chemicals in the environment we live in? Terrible chance? Abso-fucking-lutely. Duh. You're reading this, you know that. There are these same risks for a million other diseases as well, many have the same terrible impact that this whacked-out cells have. In fact, there are countless ailments which ARE in fact caused by ill actions of the afflicted. Is the patient EVER to blame? NO. Is cancer a punishment, to patient, family or friends? I certainly don't think so.

Cancer is as bizarrely unpredictable in nature as a snowflake or a raincloud, and just a unique.  What it does to each person is entirely dependent on the complex nature of each body it grows in and the connections that body makes in our human world. This, and please don't think I'm crazy for saying so,  is strangely elegant and beautiful. A deep cellular beauty that defies the laws of life. Cells which can no longer die on their own, they only know how to live and grow. They've somehow forgotten their place in the circle of life. Fallen out of the circle completely. It is very difficult for me to NOT find the random absurdity of my cancer fascinating.  Patterns and scrambled patterns and patterns turned inside-out which find patterns again. I suppose, perhaps, nature does always seek to order things, no matter how chaotic...

Ultimately, nature is cruel. It did not soften its rocks for us to climb on because we've suffered at its hand before. It didn't make the wind warmer or the sun less harsh. It doesn't know or care what human lives we have lead before it mysteriously slips in a sets off those cells. These are all divine and painfully complex acts of a universe in flux.  I do not think nature understands suffering, at least as we feel it.  I can't write about the suffering of another species, flora or fauna, though I'm completely sure it exists outside of us somehow.

Suffering and pain and loss and guilt and anger and every emotion we are bound to feel (and I do mean bound) are our reactions to the situations that cancer causes in our lives. Cancer did not make me feel any emotion until I knew it was there. My awareness of it made it painful. Like a wasp that I didn't know was on my skin until I was stung. My loved one's awareness of it caused them pain and fear as well. Physically, I felt pain, as most cancer patients do at some point, but psychologically this was not as distressing as knowing why that pain was there. Knowing what was happening, out of control in my body, caused anguish. We like control. I like control. Cancer is the embodiment of an organism out of control.  It is a very easy target for anger.

This is such a complicated gem to turn for me right now. This idea has been haunting me for awhile. What if I'd never known? Just slipped away, as so many have done, without knowledge of this thing? Well, there I find another paradox. I would not have known, but those I love would. I would have, silently and without at least the pretext of a fight for control, lost love forever as they lost me. This would cause them anguish. Another something that cancer cannot know.

Love. Cancer can't know love as it can't know loss or anger. It cannot know.

I suppose this is the ultimate cruelty of this disease. We are, as a species, aware. This is what makes us so different from the rest of the animal kingdom. We relate the world around us in a way that the world can't always relate back. For fuck's sake, we relate to each other in a way that can't always be related back. We make complex connections that span lifetimes. We dance with each others emotions and link our lives together, pull them a part, place value on things and each other. We love.  Love in all it's varied forms requires a knowing.

Modern medicine has, to some degree, tried to regulate this oddity and kill these confused and damaging cells. It takes control. It reminds these tragically destructive cells of their place. Medicine can be tragic too.  "Like a fire storm" is a term I've heard attributed to much chemotherapy. It is gruesome. Grueling on our minds and spirits and bodies. Even in targeted therapies, like Gleevec and the hundreds of other therapies- radiation, cyberknife, hormonal treatment, surgery, the list goes on- the unaffected body is damaged. There is simply no way to avoid the destruction and, for me at least, the knowing of this is what made it horrifying. I had lost control of my body and then it was taken from me. Thank the heavens that the same mechanism in my brain which had me know the horror happening to me and around me, also gave me the chance to know the light after.

You see, knowing all of this, is what makes it impossible for me to be angry at cancer. Using these precious moments on anger at something, cancer, which doesn't know any better, is just about as useful as being angry at the raincloud that soaked me. It is just as random. Maybe I could have known it was coming, seen some signs, but I could not know precisely when or how or where. The cloud didn't want to cause harm, it was just doing what it is designed to do. Instead, I will take that reserved energy to prepare myself with an umbrella for me and as many friends as I can manage, to weather the storm when it does come.

It is a terrible thing, what those cells set off in our lives. I am profoundly, deeply, nearly indescribably sad at what a cancer diagnosis causes. It pains me that anyone is set with the burden of this. That lives are lost and torn apart. That there is distress and suffering. It is awful. I am not, for a moment, expressing that it is not a horror show. It is. It is completely devastating. I guess that must be because we know. We love. And maybe that is why we suffer.

It seems now, after writing this out, that I still have no solid ground to stand on, just more questions to mull over. The eternal question remains (a question that would be insane and thoroughly epic to answer on a bullshit little blog): why? Maybe there isn't an answer. Rather, maybe the answer is just: because. I haven't the foggiest.

This disease has had a profound impact on my life and the lives of many I love dearly. I have a strong suspicion that I may spend a great portion of my life trying to work out 'why'. Today, the question is not 'why me', I've answered that before with an earnest 'why not me'. Today, the question is 'why them'.

The follow up may be, 'what are you going to do about it'. Well, cancer, as much as I can.

Back to the Swampy South

Later today, after landing in Houston for my 9 month (9 and a half if you want to be technical) post-transplant check up, I will be posting my First Descents story. Just trust me that the wait is worth it:)

Tomorrow P and I will meet with Dr. de Lima (who I suspect will chastise me for my windburn from last week...), have some blood work done and a bone marrow biopsy.  We'll get to catch up with my dear friend Sarah D. who is preparing for her own transplant in a few weeks and hopefully manage to stay the hell out of the Houston heat. After the glowing positive energy I spent last week basking in, may I just say that I am not fucking happy about having to go down there right now. But, life is full of bad timing and challenge. Reality and responsibility reign these next few days. So it goes.

Check back later for some fun and, as always, MUCH LOVE (and sunscreen!)!!!

First Descents a-go-go

Packing this electric blue suitcase has meant, all but one time (when I packed it almost precisely one decade ago to tour Europe), that I am soon to board a plane to hell. That my destination holds pain, sickness, fear and uncertainty. I remember vividly hauling it down the steps and out of my home that hot, sticky morning last August when Phil and I left for Houston. It is high time, I believe, to create some new memories.  Let's get moving.

After weeks of meticulously hunting down the necessary items to pack (Scree Pants anyone?) and several hours organizing and labeling my three (yes, THREE one gallon size- see the orange backpack? 80% of the space in that bag is occupied by pill bottles) bags of medications, finally tonight I feel excited. A touch nervous (mostly about not screwing up and getting on the wrong flight and ending up in Siberia), yes, but overwhelmingly excited. A happy excited, like a kid feels before a field trip. This is an uncomfortable feeling for me, as though my mind and body have to remember how to feel something other than dread and anxiety. It's so, so strange. I know this feeling, but it's been so long that it feels new again. Truth is, I'm allowed (read: must allow myself) to feel happy now. I'm allowed to enjoy my life, this beautiful life. And I'm going to do my fucking hardest to savor every moment.

I will be departing for Estes Park, CO bright and early tomorrow (Sunday) morning to spend six days pushing my limits, connecting with other patients and survivors, facing some very intense fears and breaking through (well, maybe just cracking the wall) to the other side of the hell I've been living for two and a half years (been chillin' in the ninth circle for the past nine months or so). Oh yeah, and being filmed doing all of it (as if there weren't enough to stress about). We will be climbing, rock climbing in fact, repelling, hiking and having a jolly good time being alive. It is my hope that after this adventure I will start to feel like a survivor. Though, you know what? If I don't, even if I just feel pride in the achievement of flying by myself for the first time in my life, I will have accomplished something.

Before cancer, the B.C. me (ha, interesting how that works) was a chicken. Insecure, doubtful of the strength of this body, uncertain of the fortitude of my spirit, fearful of being unable to connect with others, afraid of embarassment. Hell, this After Cancer me still feels all of those things BUT this is the first time in my entire life where I've taken these things by the balls and held on tight. Taken control and taken a leap holding on to them. This trip with this amazing organization may just be my first step out of those cycles.

My hope, aside from my own physical and emotional goals, is that I experience a sense of community in the Young Adult Cancer Community. I've not met many of us, though there are far too many out there (some of you read this blog- holla!). Those that I have had the honor of knowing I hold dear. Like some sort of warped fraternal bond, I would expect that the group I am about to be immersed in will be no different.

Though it seems as though I have a great number of expectations for this experience, and I do, these expectations really fall on me. I have the expectation of myself that I will drop into this experience and extract as much as possible from it.

Some things it may be helpful for me to come clean about to put my nerves in perspective. Please don't laugh, judge away, just don't laugh;) :

• Mountains make me uncomfortable. There is probably some deep psychological reason for this but, nonetheless, I am totally bugged out by them (something about isolation maybe). During my time in the Alps (a decade ago) I was unsettled the whole time.

• I have never flown alone anywhere. 

• While doing this on my own is extremely important to doing this deep, personal work, I really wish Phil were coming along. I anticipate missing him terribly. We've been separated too much this past year...

• This is the first time that I am doing anything (by choice) that I know NOTHING, nada, zilch about (WTF is a carabiner anyway?) and have never even seen done in person.

• This is the first time that I will be with a group of people, for an extended amount of time, where I know not a soul. Time to make new friends :)!

• After looking at the pictures on First Descents Facebook page of past camps, I am thoroughly convinced that I am so not cool enough to be doing this.

 Because we'll be up in the clouds, and we all know what that does to WiFi and cell phone reception, I will not be updating until I return.  Instead, and this is something I'm really excited about doing, I'll be keeping a written and photo journal. Hey, it will even been on film (cue nervous laughter).

Thank you to my dear husband, family and friends for supporting me in this adventure and, of course to First Descents for providing this amazing opportunity.

Much love, dear friends (especially you, Sarah D.)