Thursday, September 2, 2010

Day 5 (or 95 bottles of beer on the wall)

I smell.

No, that's not a joke (though I'm sure someone would probably agree with that statement), I actually smell. Not bad, just...uh....weird. Like, really weird. And apparently it's going to get stronger. Yesterday one of my nurses commented that my pee (cancer blog, TMI allowed) was starting to get that BMT smell and then told me that soon my room would start to smell that way too. I was all like "Uh, OK weirdo." and went along my merry way. This morning?  I caught a whiff of myself when I rolled over (yeah, totally sniffed the pillow first convinced it was something on or in there) and could do nothing but make a face and then laugh. Of all of the injustices in the world, this has to be right up there with there not being In-and-Out Burger on the East Coast (because let's be real here, smelly ain't bad when you're alive).  Ya know what? I'll take smelly and feeling good over perfumed and feeling shitty. Any. Freaking. Day. 

The nurses and doctors, and some other patients, have commented on my general state of not-very-decrepit, using words like "you look amazing for five days out!" and, to be honest, I wish they would stop saying that. Those words feel like a burden and more often than not bring the scary foreboding feeling that I shouldn't be doing this well. That there's no way anything good can come from feeling and looking this good at this point. There's no way I got off feeling good. I don't deserve to feel this good.  But then I remember that there are patients like this, that it is possible, does happen and that there are always exceptions. My doctor wisely said the other day that there are not a limited number of "easy cards" that one can draw during the transplant process (NOT that this is easy, just in the world of transplants/hell). Everyone IS different. This is not to say that I don't anticipate feeling crappy (or very crappy) as some point, it just serves to calm me through these first days. That calm, or finding that calm is also a way to achieve more calm. In the moments when I feel the scary 'what-ifs' and 'I heard that's' and 'this coulds' start to creep up, bringing my heart rate with it, I focus my mind on slowing my breath. Slowing my heart. Stilling my mind. The other day during one of those moments, I started thinking about what happens to your body under stress. Your immune system can't function as well. You can't sleep. If my heart rate is too high, those little blessed donor cells could be damaged or (ridiculously) just go coasting around and never graft. These are all things that put my system under more stress than it needs, preventing my healing. Keeping me here. All of this is counter-intuitive to what we need to be goin' on right now. So I work to stay calm and happy.

How do I stay as calm and happy as possible? It's not easy. No lies here. It's fucking work to not freak out or get really bored. Do I freak and get really bored? Fuck yeah. Totally. Do I stay that way long? Uh, I try my damnedest not to. The temptation to sit on my ass in bed and wallow is totally there, it's not a strong temptation, but it's there. Yesterday, thankfully, there were so many things that came my way to perk me up, keep me active and very, very happy (lies, I'm not very, very happy. sometimes it's just not sad).

One thing I have learned is that, around here, word travels fast. "Oh! You're a musician?!" POOF! Keyboard and Music Therapist show up. "Oh! You love yoga!" POOF! Yoga teacher shows up. The only thing this phenomenon doesn't work for is food. "OH! You want vegetables and fruit?" Meh, no. The only thing that shows up is more crappy food (my love affair with the grilled cheese is over. In fact, I may never eat another for the rest of my life). Oh, well, can't win 'em all. So, back to my point. Word got around that yoga may be just what the doctor ordered, so yesterday afternoon a teacher showed up.

Satsiri was like a pool of calm cool water. She is a small, feather-like woman with this smooth gentle voice. She practices and teaches Kundalini yoga, something I've only tried once, so it was fascinating to talk to her. Though our yoga worlds are a touch different, they are also the same.  Actually is was more than fascinating to talk to her, it was so deeply satisfying to speak 'fluent yoga', as we joked, with one another. She led me in a mediation and taught me Kirtan Kriya and a few more practices. This may be a  window into a great opportunity to deepen my practice. What a perfect time in my lifeline to be adding this. How lucky I feel that this was available.  Satsiri reminded me also of something yesterday that I am surprised hadn't dawned on me until now: John Friend, the founder of Anusara yoga,  began his teaching career in Houston. Uh, duh. In my head there is some symbolism in that.

There was one thing that stuck out to me from our conversation, however. Satsiri was telling me about her daughter, who is about my age and a Kundalini teacher like her mother. She told me about her daughter's training as a teacher, which she began when she was 13, and her career in integrated health. Then SatsiriSatsiri's daughter was unfamiliar with (she did not specify what that style was). Satsiri said that her daughter was horrified that the teacher and students chatted through class and laughed. Her daughter was also horrified that this teacher mentioned a party that she went to and told a story about that party (she did not share what the story was, however). It was not the story that stuck with me, it was how Satsiri described what her impression of that class, through her daughter, was: "There is just nothing yoga about that. There was no yoga going on there". Wow. Huh. As much as I liked Satsiri, this statement surprised me. My eyes darted to the pump I'm hooked up to, and I felt the port hanging out of my chest and the cold linoleum under my feet. I noticed the tubes twisting from me to the pump and the cold air conditioning on my bald head. Standing there, in the midst of everything that is outwardly "just not yoga", I felt the yoga. Yoga is not in the poses or the dogma or the lilting music or the Sanskrit names or the Lycra clothing or the dimly lit studio or the incense. Yoga is in the practitioner. Yoga is in everything, you just need to look for it. It was so shocking to hear the assessment of what yoga properly "is" or "isn't" from someone working in a cancer hospital, someone who is a survivor. Satsiri used a lot of language like "Yoga teaches that..." and "Yoga says that..." in conjunction with words and ideas that I'm unfamiliar with, but that does not make her yoga less or more than mine. It's just different. In a place that is so full of innovation and cutting edge thought, of wonderful care and great opportunity, it was jolting to hear a gate slam. "....nothing yoga about that". Huh. Nothin' yoga about this then, either.

The rest of the day was rather uneventful, as was much of today. There is a story to tell about today but I will leave it at this: there is another transplant patient on this floor, who is roughly my age, who is also named Laura, who will be receiving an Auto BMT (her own cells, not a donor) next Friday. She has had a rough go of it and she is a delightful woman with a very caring boyfriend. Please, if you can, send some of your prayer/intention/juju her way.

Also, to H-ford folks who went back today, it was AMAZING to hear from you. Who woulda thunk that I would do anything to be sitting in that meeting this morning?? :) Hoping you all have a wonderful start to the school year, give those little ones an extra squeeze for me if you think of it (or make them sing their LSAs twice, that would be just evil and fantastic;)!

Thank you for the cards, messages, texts and calls. These are the tough weeks, it is SO FREAKING GOOD to see your words and hear your voices. Happy Fall, Philly!

Much (smelly) love. 


  1. We definitely missed your voice this morning for "God Bless America" - we did an a capella version and the guys severely outnumbered the female faculty members. It actually turned out pretty nicely for half of the men sight reading on stage!

    I wound up with one sixth grade chorus along with my nine general music classes - maybe I should make them sing LSA's just to torture them! Then I can tell them that it was all your idea! ;-)

    Good thoughts for a restful night,

  2. My deep down gut feeling says the looking and feeling good is coming from what is inside your head and heart; from your sense of the ridiculous (being able to laugh at the "smellies"), from your ability to find the positive moments in an often overwhelming situation and from your amazing sprituality that allows you to see that the diversity of Yoga/people/the universe is a positive thing. Gifts like this shine through and the world can see it! Celebrate these gifts and know that what you have offered to us by sharing your courage and wisdom and humor is flowing back to support/sustain you as well.

  3. Laura,

    I just recently found out about your blog, since your sister posted the link last week. My prayers are constantly with you, so you may heal and continue to spread your gift for and love of music.

    I have a favorite quote (and of course at this moment, I can't remember who said it) which is, "After silence, that which comes closest to expressing the inexpressable is MUSIC." Reading your blog from yesterday reminded me of this quote, and how true it is. How wonderful to be able to have a music therapist there in your building to aid with your healing. Amazing.

    I've been so inspired by your story, coupled with all the cancer which has plagued my family, and how little I can do other than donate money to find a cure, that I've been considering becoming a marrow donor. That is something I can do which will make a difference. A REAL difference.

    Stay strong. Stay faithful. Keep smiling. You will perservere!

    Jacki Armes

  4. i agree with Elliebet's comments. you look better than "expected" because of every little thing you've done (and continue to do) to set yourself up for success. you aren't PASSIVE in your healing! you are an active healer, for lack of a better term. keep that UP! when i pray, i really like to have a specific prayer/intention, and right now its for complete and quick grafting of those loving little cells, and for calm and peace in your heart, head, and gut. I love what your doctor said about there being an unlimited/unnumbered amount of lucky cards to be drawn. that resonates for those us who tend to "wait for the other shoe to drop" when things are going well. (i wish that weren't me, but it is.) (working on that.) keep it all up, hon. your efforts are all toward getting you right back here where you belong!

    love and miss you.
    (ps, what kind of "smelly" are we talkin' here. creamed corn? garlic? some other random item?) lol.

  5. Yo from Philly area! Missed u at today's mtg. Had a veggie sandwich in your honor (mozz, tomato, basil on a fun roll.) My cafeteria table talked about your blog and how AMAZING it is! You ARE there, Laura, in our thoughts and conversations and prayers. Keep wowing them with your good looks!

  6. Laura, many, many parents asked about you at Open-House. They all send their best wishes, prayers, and love. I really missed you today, not being there as part of our Chestnutwold Team. Big Hugs!

  7. Great to read your blog.
    Sounds like your body is doing what it needs to. You are just one wise beyond years, young woman.

    Om is the word.
    Love Andrea

  8. you're a yogi through and through Laura, keep practicing :)

  9. Laura! love this post. I had such a cuckoo experience with kundalini, extensively chronicled in the old blog, but of course. let's dish sometime.

    also! I practiced with your friend Jennifer the other day who lives near you and went to college with you. she was delightful. found out you're a musician then and where you teach... so cool. wish we had you at PW! those kids are soooo lucky to have you!

    Keep on rocking!