Saturday, August 27, 2011

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.

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

Tuesday, August 23, 2011

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.

Sunday, August 21, 2011


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.

Thursday, August 18, 2011

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.

Sunday, August 7, 2011

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?

Thursday, August 4, 2011

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:)