Sunday, August 29, 2010

Day 1 (or 99 bottles of beer on the wall)

And here is where it becomes difficult.

Yeah, funny, I know. As if chemo and ATG and months of waiting weren't hard, right? Well, nothing prepares you for the ultimate morning-after experience. After a night of interrupted sleep (totally fair if you ask me, it was all for important reasons- though the debacle of the syringe of heparin hanging off of my chest for an hour may be debatable...), I awoke this morning to a swirling maelstrom of emotions. Relief that the night went so darn smoothly, hunger (honesty here people, I didn't eat well last night), panic, fear, loneliness, anxiety and joy. This morning was the morning of breath.

At one point, early this morning before P even stirred, I had myself so worked up with the "what-ifs" and "omg-eds" that my Tacrolimus line (slow moving transfusion of a thick liquid medication meant to help stop rejection) began to back up with blood. Obviously this made me panic further, which didn't help things much, and buzzed the angelnurse mercilessly until she came in and told me that I had to make my heart stop beating so fast. OH. Uh, sorry :/. IN. OUT (goddammit). IN. OUT. in. out. in. out. in. out. in. oooouuuuuttt. OK. Chill yourself girl.

This shit is fucking scary. As in, I feel the presence of my donor, feel his prana, life force, the force the spiritual strength that surrounded last night. But I also feel the crippling fear of a time-bomb ticking in me. This was one of the most terrifying mornings I have ever had, this I will be honest about. After a few hours of trying desperately to focus on my inner quiet, inner strength and all of my practice, my fidgety ass gave up and asked for Ativan. You know, sometimes, even though you have all of those strong building blocks to guide you, those things you have practiced with dedication, you have to pull the emergency cord and take a friggin' pill. And go to BINGO. How's that for a change, eh? Saturdays used to be coffee and yoga and now they're pills and BINGO. Apparently I'm 80 (I hope to have this routine at 80). Well, actually, as I was readying myself for the hike to the PediDome (giant sunny room filled with bright colors) Dr. Lee appeared to check up and geek out about Jazz (did I mention that he was a jazz major in college and loves playing the trombone? um, HELLO! OBVSLY he's kickass). He talked about Pat Metheny and Spyro Gyra and what his transplant tunes would be (mine were Puccini, did you hear;) ). Love it.

SO, yep, I pulled my bald butt out of my sadsack bed, took a damn shower (seriously, I need to post about what a hoot it is to shower with a CVC...saran wrap abounds), and went to BINGO. Oh, and won a round or two. And there were prizes. Sweet:) I've mentioned this a billion times on here, but there is something very special about this place. There are group of grey-vested volunteers who put together activities for the teens and young adults on the weekends and often pop into your room to say hello. Most are my age (which is a little weird) and some are a bit older, all are delightful. One of those volunteers, Brittany, stuck her head into my room last weekend to say hello and joyfully pulled up a chair to sit with me today as well. As it turns out, and Brittany was bursting to tell me, she grew up in Swarthmore and still visits the Philadelphia area yearly, though now she and her Dallas-native husband live here. Both of her parents are natives of Norristown and still has some family "back east" (love this saying). Talking to her about stupid things like how we said the word 'crayons' as kids and how she was made fun of for this when she moved here. We talked about the fall colors and the smell of snow, you know you know this saying "I can smell snow". She even caught me by surprise when she said that she had heard the district I teach in is quite good (and it is). So refreshing. Seriously, thank you Brittany. You and your big heart made my afternoon. Thank you for sitting with this train wreck and gabbing about stupid nostalgia. It was the breath I needed today.

Not gonna lie, I was wiped OUT after BINGO (yep, 80) and retired to my luxury suit for the afternoon with my parents to facebook stalk, watch Phenomenon and Jersey Shore and finally pass out. Somewhere around 8, Dr Wernner (another attending) popped in to chat( I love this chatty doctor thing) and veritably scared the shit out of me about mucositis (READ: big angry mouth sores) and talked about her high school love of the french horn. It is SO FREAKING COOL that most of these doctors are fellow music nerds. Now to find some yoga nerds....:) But honestly, mucositis is scary and painful and I am very very very afraid of it. Not gonna lie here. Though I promise not to post the gory details if it does happen WHICH IT WON'T.

P is staying the night again, like the knight in shining armor that he is (he's even wearing gloves and a mask, though they told him he didn't have to). Boy is gonna get breakfast in bed for months for this one. It's like being in a freak world summer camp. But there are no roasted marshmallows.

facebook posts made me smile wide. Thank you for allowing me to share this journey with you, dear friends.

Much love!


  1. ((((HUG)))) and ((((hug))))

    with ya every step, pal. love from "back east". (hey, i lived in az. and ca. for years and some in those states teased me for my pronunciation of a variety of words. sometime i'll give you the list of words i had no idea made it so obvious i wasn't a native to phx or san bernardino. haha! you'd be surprised at some.) anyway. thinking of you all day. i have to tell you, i have "donor bone" in my hip and i had some feelings about it that surprised me at first. again, for another conversation as to not take up too much space, but your blog reminded me of all of that. breath, bingo, and attivan,..... great combo, huh? you got this, L. xox

  2. take one down, pass it around, 98 bottles of beer on the wall!

    only 97 more! and we love you!

  3. Laura, I lived in Alabama for 5 years before moving to Philly (I'm a native to Central PA). Anyway...I was made fun of for 5 years for my pronunciation of certain words. However, my greatest accomplishment while living in Alabama was getting my teacher friends to say, "You guys" instead of "Ya'll". Saying my prayers for you and sending happy vibes.

  4. Thanks for letting me/us know what its like for you.
    Keep healing,breathing and being you.

  5. After all the antipation of the transplant and build up to it, it's not surprising that the day after was a big letdown. Now it's just time to lay back, rest and let time, and drugs, take over the healing process. A tall order I know, but after the strength that you have shown up to this point, there is not a person you know who doesn't know that you can do it. Hugs and Kisses, Nan

  6. Nan here again. I just discovered that my frequent responses to your blogs did not go through to you. I obviously have been doing something wrong. Oh well. I just found out what I have, or haven't been doing thanks to Uncle Jeff. Just to let you know that I went back and put most of them in again so that you won't think that I have been ignoring your daily updates. Keep them coming. Your inexperienced (with blogs) Nan

  7. Laura...I'm one of your Dad's "old" friends from way back...and I just want to thank you from the bottom of my heart for sharing this incredible journey with us.I eagerly await your entries, and find your spirit and attitude to be inspiring. Much love and support and juju!
    Anne Oreskovich

  8. Good to hear from you Laura! Hang in there and tell P I said keep up the good work caring for you;-) Miss ya and sending love from Philly!

  9. Dear Laura,
    I am sending love and hugs to you! : ) And daily prayer for you, Phil, your family, your health care givers, and your donor. Praying for restored health, strength and peace- both physically and mentally.


  10. Love and strength to you and that incredible man of yours.

  11. Laura, I think it may be harder to be fearless when you don't have a visible or tactile adversary, like the chemo or ATG side effects or getting your port or entering the hospital... So I was very touched to read your unembellished talk of yesterday's emotional mix, and the plain truth of it. 'Good things come to those who wait' comes to mind for me. There's some powerful learning in patience, in waiting. But it's definitely not easy. Strength in breath, as you know so well. Love, C

  12. FYI: Bingo is awesome!!! Congrats on the big win!!!! Thinking of you and P!

  13. Laura,

    When you come back to philly we can go play bingo here. That hair color you gave me went from dark blue to gray. So I'm looking like I would fit right in about now. Steesh said she can tear up some bingo! We both love you and Phil! Can't wait for you both to come home! XOXOX Shawn & Steesh