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.
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.
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.
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.
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:)
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:
