Write and Wrong

Wow. It is really hard to blog when you have the wrong attitude. I just haven't been able to do it since mid-December!  With two failed donor attempts, I've just had the wind taken out of my sails.  Up until this, I think I've had a really good attitude. Such gratitude for every day, everything.  And now, I can't say I have a BAD attitude, but just that I have ATTITUDE. Like I just want to put my hand on my hip, snap my gum and say things like, "Whatevs".  I guess I could have blogged these last few weeks about how CRANKY I've been, but this blog isn't a diary or therapy. But let it be known that when you're waiting for a bone marrow transplant and things just aren't going your way, it can suck. And I guess it mostly sucks because I had to do this interim round of chemo! My goodness am I sick of chemo. Holy crow. Eight rounds! Sometimes I look in the mirror and I can not believe I have survived this! My poor body!

I think this is the first time I've blogged from the hospital.  Yesterday was interesting. I checked myself in, and then out, and then in again. Yup. I think I'm startin' to look a little crazy. Not the sweet patient I've been all along here in London. I did a week of chemo last week while my magical friend Jenny Taylor visited from LA. We came and went from the hospital twice a day for five days. Exhausting. But so much better than staying in.  And of course, this afforded us the ability to eat everything in London. French, Indian, Italian, Juicy Lucy's.  And it also allowed us to take my kids to the movies.  By the way, "Puss 'n Boots" is much better than "Alvin and the Chipmunks, Chipwrecked..."

Jenny went home and my blood counts went down as they should.  Doctors were like, "you better stay in the hospital...if you spike a fever...you could become septic...".   Eeek. So I stayed.  But I felt so fine and I was SO bored! Pissy! Lonely! That I signed "the document". The one that says that I'm checking myself out and going home against doctors' orders.  THAT felt good.

So then I go home yesterday morning, and spend a lovely day with my lovely family and then start to feel kinda sick.  With a cough and a few chills. I get out my trusty Boots (the CVS of London) digital thermometer, (that I paid 40 pounds for!!!) and it is allllll over the place. In 5 minutes I go from 36.6 to 38.1 to 37.7 to 36.6.  I'm trying to remember the Celcius to  Fahrenheit calculation, getting all confused and flustered. Because it's true, if your immune system is knocked out, you don't want a fever.  So, freaked out a 2:30 in the morning I make Andy take me back to the hospital. I check myself in. They take my temperature and, it's normal. Aaaaahhhhh! Back to being CRANKY.

Nothing feels better than getting a visit from my boys. They came tonight and it cheered me up so completely, so totally.  And so I will stay in here and flow into 2012 watching the fireworks at the London Eye from a hospital window. Whatevs...

Another Song

It seems like everyday I've got some song stuck in my head about waiting. They just come to me and hang around for the day. Today's it's the Rolling Stones, "Waiting on a Friend".  When I looked up the words, I never realized it's a song about prostitution.  This line spoke to me today:
A smile relieves a heart that grieves
Remember what I said
I'm not waiting on a lady
I'm just waiting on a friend
I'm just waiting on a friend...


Even though I've felt like a cranky bitch on the inside, I've just gotten tons of smiles from people today. You know those days? When people smile on the street and folks seem super friendly? 

In fact, today I was friendly but crazy. I found myself chasing my friend Szcerinas,  tiny, fancy, pure-bred, temporarily rogue puppy dog, as she ran home by herself from Regents Park to Abbey Road. By herself! No leash and dodging traffic. She whizzed by and I started chasing her, screaming "Stop that dog!!!"  People tried, but she was a slippery one. And way too fast to catch! Then, some woman stops her car and says, "Get in!" and so I do! We sped after Bella together, in the car, as people on the street pointed us in the right direction. As we honed in on her, I hopped out of the car to take a side road. I think I said something like, "Thanks! You're great!". And she left. Only at that point did I realize I didn't know her. Isn't that crazy?! And nice?! Long story short, I found Bella outside her house. And now it is all very apparent to us that she knows her way home from Regents Park and knows how to deal with traffic. Cheeky doggy.

Have we all needed to depend on the kindness of strangers as some point?  I know I do. I am depending on the kindness of a donor.  We've asked strangers who have lives, who have maybe been touched by leukemia at some time in their lives enough to inspire joining the registry. And then one day, out of the blue, maybe many years later, they get a call from a nurse saying they're a to match with someone who really needs their help. Someone who really needs some kindness from them. It's a crazy kind of kindness. They match a complete stranger. Me. 

So, blessings to my donor who's trying to get healthy again. Healthy enough to donate and save a life. Mine. 

In the meantime, I am waiting. Which includes this damn round of chemo. It seems most likely it will start Thursday morning and last for five days. And most likely, when my blood counts plummet I'll get some crappy infection with a fever and take tons of antibiotics and antivirals and anti-antis. And then I'll have to recover and be inside the hospital for weeks. Bitch moan bitch moan. But I must do it because I CAN NOT relapse again. Not an option. 

I'm just waiting on a donor friend. I'm just waiting on a friend...

Weathering Disappointment

I just had my mind so set on beginning the transplant process. Andy's been constantly talking me off the ledge. Taking care of me in that special way he does. With compassion and a good ol' positive spin on things. There are so many different ways to look at things, and luckily there's always the chance to change the way I'm looking.  I can think of the worst-case scenarios or I can think of the reasonable scenarios (better choice for sure). And I am so glad my friend Jenny is arriving on Thursday from California to keep me laughing.  I still really can't see any other peaceful way of getting through this besides NOT THINKING.  It always comes back to that. Always.

So, these are the things I like to do: help out in Ari's classroom, shop for Hanuka and Christmas. Take my gorgeous adorable dog to the dog park where she runs and runs and is happier than happy. I also have two art projects in the works for months that deserve finishing. Then there's always cuddling; the boys, the puppy, the hubby.

So if all goes as planned, (unless somehow I can get out of it) I'll go back to the hospital on Wednesday to get a new PICC line and start treatment on Thursday. To be continued. xxx

Kindness and Anger

The kindness first.  As my transplant has been postponed, at first I didn't even know what to do with my feelings. I couldn't even write about it because it was like a blank. Don't feel, can't write...
Then everyone around me helped me feel again. Friends would approach me with tears in their eyes from frustration at my having to wait, do an interim round of chemotherapy, be in the hospital for Hanuka and Christmas...  One couple, Lisa and Mario, the parents of a boy in Ari's class made the incredibly beautiful gesture of offering me their children's banked cord blood! How nice is that? It makes me cry every time I think of it. It's hard to feel completely deflated when so many people have got your back. I'm so lucky that why.

But, that said, deflated is the best way to describe it.  I also have been feeling PISSED OFF! Not at any person in any way. But just at the situation.  It just flat out sucks. Another round of chemo to me sounds so horrible. I can't imagine doing it! But the doctors' concern about leaving me untreated until February actually outweighs my feisty nature to say screw it, I'll take the chance and skip the chemo. I just can't do it. I've got to listen to the doctors. yuck.

I also feel SO BADLY for my family. They are my angels and I hate leaving them to go into the hospital. We're so close. Such a team. I love being on their team. But I've got to go sit on the bench right now.  But unlike baseball, it means we all sit on the bench together. They are so kind. We're just waiting.  Waiting for the time when mommy can hit her home run.

It's important to document

As bummed as I feel right now, without a single good joke in mind, or a single song stuck in my head, I know it's important to get down every twist and turn of this crooked path. And crooked it is, as I am reminded today. I had my head SO set on going in Monday and tackling this next step of going into transplant. I feel like I've been mentally preparing for the Super Bowl and the game gets canceled. Boom. It's stunning.

So, donor #2 did NOT pass their medical exam this week.  "It's so unusual!", somehow does not make me feel any better.  They were not taken off the registry but were "deferred". Till February 6th. Something is up with them physically and they've been given two months before they can come back and repeat the medical exam.  That is ALL the information I've been given.  Don't know what's wrong.  It is a flu? STD? What?

So instead of a transplant now, I'll probably have to do another round of chemotherapy (kicking and screaming, by the way), while I'll either wait and see on this donor or it's decided we move on to other donors who may not be as good a match for me. I dislike both options. Period.

All this said, I document it because I still believe that one day, I'll look back on this and I'll be so thoroughly done with my transplant, that I'll read this and be like, "oh yeah...remember when that happened?"  So, here's to you, giant bump in the road. May you be left behind, one day, to a distant memory.

Oh. And here's a joke. Pretty appropo too:
Why did the chicken cross the road, roll in the mud, and cross back?
Because he was a dirty double-crosser!!
hahaha

Stll Waiting...

The Talking Heads song "Crosseyed and Painless" just popped into my head today.  Of course, I guess, because the refrain is: "Still Waiting".  So I just Googled (there is it again) the lyrics to the whole song.  I'm not surprised that they are strangely brilliant coming from David Byrne, but they are eerily related to what I'm going through right now: waiting for information about my second possible donor. "Nothing there!---No information left of any kind. Lifting my head---Looking for danger signs".  

I just got off the phone with Amelia, the transplant nurse, and she told me that it's likely that I won't hear anything this week. Maybe on Friday, maybe Monday. But the fact that we've heard nothing yet is a good sign. No immediate red flags. It takes time because they have to correlate many blood tests and those results need to be signed off on by three doctors; one in the donor's country, one at the stem cell center in England and one at the hospital in London. 
"Facts are simple and facts are straight
Facts are lazy and facts are late
Facts all come with points of view
Facts don't do what I want them to
Facts just twist the truth around
Facts are living turned inside out
Facts are getting the best of them"

And speaking of Postmodern music, I had a good time last Friday with my friend Kelly at the Victoria and Albert Museum. They had an exhibit on POSTMODERNISM!! My first thought was, "Uh oh, how could there be a museum exhibit on everything I lived through in college? Yikes. I'm old!" And Kelly, of course, being much younger than I, was like, "Oh yeah! I remember this stuff from Junior High..."  Anyway... It felt so nostalgic and I felt lucky to have been around during a time when there was an artistic movement that took everything we knew and turned it on its head. David Bryne, Laurie Anderson, Grace Jones, Devo.  It was a tough transition for those of us coming off of Joni Mitchell and the huge High School Grateful Dead overdose. But, as strange as it was, Postmodernism was NO DOUBT a breath of fresh air.

So, I'm Still Waiting. And will be all week. As long as I know that, I'm OK. And I'll just keep doing what "normal" people do. Buy holiday gifts, plan meals, plan playdates, chase the kids down for kisses and when that doesn't work, kiss the dog. Look at art. Make earrings. Continue purging my closet (when does that ever get completed?). And make a pedicure appointment.  Hmm, what color?

The Real Countdown?

So my half and half kids (you know, the lucky yet confused ones who get to celebrate Hanuka and Christmas) started their advent calendars today, December 1st.  They'll take on any tradition from any religion if it involves chocolate.  But as they were opening the first window, I actually got a startle. If all goes right, I have 12 days till I return to the hospital for my transplant.  Maybe I should make my own little advent calendar. One for Jewish girls who are counting down to their stem cell transplants! I could market it. It'll be in such demand.  I'll be rich!

I feel like there are so many things I want to do before I go in! Some of them are random. For example, I'm determined to purge my closet before I go. Why? I have no idea. And I want to go to museums. The Victoria and Albert tomorrow. And I want to also hit the National Portrait Gallery and the Royal Academy next week. Why? I don't know. My closet and these museums will all be here when I recover.  I think it's because there's something about feeling organized that I love so much. And it's a shame really because I am NOT the most organized person so I don't get to have that feeling very often.  And as far as the museums go, I love the after-glow of seeing good art. It keeps me perky and inspired. I guess I'm just hunting down good memory makers to last me through five weeks in the hospital.  I'm dang lucky (by the way, Ari has started using the work dang a lot.  Does anyone else use it besides him and me?), that I have those kids and that husband to keep me laughing. And I'm so looking forward to the priceless visits from friends.

Have I mentioned I feel nervous? All new stem cells. I'll still be me of course. BUT WILL I????!!!