Gigantic Butterflies

That whole expression "Butterflies in My Stomach"...it fits, until you really have them. This doesn't really feel like butterflies. I would imagine that butterflies would feel much sweeter. Kinda nice, bouncy, you know? This is like something massive is flapping its wings, inside me. Kinda sickening really. It's just so NOT butterfly-ish!

Tomorrow, Donor #3, who some have renamed Mr. or Ms. Serendipity, is going for his/her medical exam. Pleeeeeez let them feel alright. Please let them be alright. And please let them still totally want to do this. Donor #3.  At this point, my saving grace, my life is so in your hands, it's feeling very Hollywood and dramatic. Donor's 1&2 just weren't well.  We'll never ever know why.

Donor 3, they say you're young. I'll bet you're gorgeous! And I love you already. Just like I love Donors 1 & 2. I love them for trying. That was so so nice! What a nice thing to do!!! It's unimaginably nice! And all you amazing friends and family of mine who have registered, donated blood, donated money, you're unimaginably nice! Thank you thank you.

So, hence, this massive, anxious butterfly.  I imagine my best bet is to throw a saddle on it because here's the schedule: Donor #3 passes their medical (right?), I go into the hospital on Feb 22, I receive fresh fabulous new cells a week later (that is day 0) and then I take 4-6 weeks in hospital to recuperate from that. After that, I go home and continue to be really careful until day 100. But a very close eye is kept on me to look at how well the new cells and my body get along (fabulously I'm sure).  After a year I should feel totally like me again. And then, 5 years after transplant, I am just like anyone else in terms of risk for leukemia. Just part of the regular ol' population again.

So, I could have Major Butterflies, or Sergeant, or General Butterflies for 5 years! That's a whole ARMY of butterflies! You could call me Madame Butterfly! Ahhh!

Ok. I"ll stop now.

Fingers crossed for Donor #3 ya'll. (S)he's gonna ROCK!

Sunk in the Funk But Screw the Blues.

I can't seem to keep my head from spinning and spinning and spinning.  I haven't been able to scrape two coherent words together. I've been in a bluesy funk. But I am going to put that aside for now.

I once had a therapist when we lived in New York City. Barry Magid. He's pretty well known for integrating a rigorous Zen practice with psychoanalysis.  He's the only teacher I ever did an 8-hour meditation with. To this day I still feel very proud, (haha, not exactly Buddhist, is that ?) Anyway, when I would come in for my weekly therapy sessions, he would often consider my issues and then respond, "So what?"  In fact, to most everything, that would be his response. I'd prattle on, blah de blah, "It's not fair", "Yeah but" and again, he'd respond, "Yes, but, so what?"  And after a while I started to see it. It's the truth.   Whatever it is, life still moves on, goes on, clocks tick. They just do. Everything that happened in the past, and might happen in the future...so what?

The attitude of "It's not fair" insinuates we can stop time, work out the injustice, win the point, and then plug the clock back in.  But it doesn't work like that. In fact, "fair" is a pretty made-up human concept. Isn't it? My kids use it a lot. "Mom! It's not fair!"  Do kids all over the world say it? Is there an innate, genetic concept that things should be fair? Or did I teach my kids this?  Maybe it is from sports? But there isn't always a referee hanging around in life calling a time out and deciding what's fair and what isn't. That's why sports are fun. They are an escape into a world that is "fair".

One thing I've learned through this cancer journey is that "fair" is just a concept. Everybody has a story. Everyone is in some way, is touched by illness, or craziness, or sadness or loss or lack of fairness. And what do you do? Stop the clock and have a fit? (That would actually be great because then you wouldn't have to waste your precious time having a fit). I always find that when I'm in a funk like this, pushing through and helping someone else makes me feel better. Or, going to see some art.

Art is so cool because it's all done by people who have taken a chance. They put their hearts out there in the quest to show how they see the world. And even though it's risky, they say "So what?".  I have a lot of respect for that.  And anytime one person helps another, they can say, "Yeah, we all have our stuff, myself included, but, so what?" I love that!

So, tonight I'm going to screw the blues. Yes, I'm waiting for a match.  Yes, I'm scared of CMV. SO WHAT?

My friend Elizabeth changes her life soundtrack when she's not loving her mood. It really works. Just put on some different music et voila! New mood!  I know a yoga teacher who changes her mood by doing a headstand.  I call it "Do-able miracle-making".

I'm going to create a great bone marrow transplant playlist of music to welcome those new cells into my body so they can make a fabulous healthy new bone marrow for me.

Right now these Carole King lines are on my mind:
"Snow I cold, rain is wet
Chills my soul right to the marrow
I won't be happy till I see you alone again,
'Til I'm home again and feeling right"

And by the way, Happy Birthday to my father who is 90 today. Maybe that should be the first song on my playlist. The Happy Birthday song.

I Love You Already

Well, I've known for about a week now that my No. 2 donor has been taken off the registry as they were deemed unable to donate for health reasons.  I felt so cheeky at the beginning of all this. Like, "I'm so matchable. Lucky me. There's a bunch of 10/10 donors for me."  And now, wow, it is down to the wire here. My third possible donor will be going for his or her medical exam on January 31st. Apparently, the transplant nurse told me, this person is younger than the first two donors which should hopefully make them more likely to be able to donate.  I'm getting so nervous now.  There seems there is a fourth donor too, but we don't even know if they're contactable yet.  We won't even know that until a vial of their blood shows up at the lab here for testing.  And so far, no vial. So all my eggs are in No. 3's basket. Hello, No. 3, I love you already.

I am eternally grateful for No. 3.  Truly, I have these feelings of adoration. But I am nervous about the CMV virus.  He or she is positive for it and I'll be at great risk for getting it after the transplant. I may be at less risk than others because I am not positive for it. But still, I am nervous.  And if it wasn't this, I'd probably be nervous about something else anyway.

I want to thank again everyone who has been so amazing for making this effort to find me a perfect match. Moms and Dads at school have been registering here in the UK.  People have been donating to Gift of Life in my name to help test their backlog of cheek swab samples. I am so grateful. Every cheek swab and every new member on the registry means another life might be saved.

Being home has been very sweet. I basically slept for the past four days. I had no idea I could sleep that much, but I had a pretty good idea of how sleep deprived I was coming out of the hospital.  I think I have to get used to sleeping that much because everyone says you're so tired after the transplant.

I start to feel really down if I sleep too much. Cancer is this weird combo of feeling like "life is short. I want to do EVERYTHING!" and "Whoa, that chemo sure makes me exhausted!" I subscribe to the first approach. But I was really thrilled when yesterday my kids didn't seem to mind at all sitting in the big bed, eating pasta and soup and watching four episodes of "Friends" back to back.  After the one with Ross in the armadillo suit trying to sell Hanuka to his kid, my mind was turning. (Although he did make for a very funny armadillo.) And it was very cozy for me, flanked on each side by a gorgeous child.

loveloveloveisallyouneed.
Dina

I Hit My Wall

I think this happens every time I'm in the hospital for treatment. I think it happened sooner this time. But I was in there for THREE weeks! The last two of which I was just sitting on my bum waiting for my counts to come back. And I hit my wall...

So this is how it usually goes:
I can't stop crying and there's nothing anyone can do except get me out of there.  They tried to persuade me.  One nurse got me a stack of computer paper and said, "Why don't you paint? Or draw pictures of all the nurses here and then publish a funny book about going through Leukemia treatment?"  She DID make me laugh. Because it was so ludicrous. And then she said, "We're so full here that if you go home and need to come back, there might not be a room for you"...  Also, not very persuasive. Like I could've given a shit if there was a bed or not for me.

Continuing to be inconsolable, the doctor finally came in and asked if I wanted to leave because the care wasn't good. OMG, the care there is so great! Again! Ridiculous! And then she asked if I was having strange thoughts. And that DID make me laugh. But I assured her that I wasn't. I JUST NEEDED TO BE WITH MY KIDS AND SLEEP IN MY BED WITH MY HUSBAND!!!  So I signed myself out. Against doctors' orders. And it felt great!!!! Great Great Great!!!
And this is the weird thing, but not so weird really:
The neutrophils (the infection fighters) blood count we were waiting and waiting for to bounce back we're 0.04 yesterday.  I'm not supposed to leave the hospital until they are 0.5.  They were just hovering between 0.03 and 0.06 for days and days and I was going crazy!! Despite that, I check myself out. Came home. Slept last night from 10pm until 1pm today (that's what happens when you don't sleep for three weeks) and then I go to my GP to get my blood tested this afternoon. Et Voila! My neutrophils were at .24!!!! That's a MAJOR jump!  And I KNOW it came from HAPPINESS!!
It's happened before this way.  Home is where my heart is.  Home for me is healing. pleasant, beautiful, loving. There's nothing else to ask for (or to hysterically cry about...). Cheers!

Ok. I'm less bored now...

On the more important front: YAY!  We have figured out a way for people in England over the age of 40 to register for the Bone Marrow Registry other than using the Anthony Nolan Center.  The Anthony Nolan Center will only take 26,000 stem cell donations a year because that is all they can afford to tissue type and put on the registry. They are a charity, and so that is $1.4M they need to raise just for the samples! They're very strict about age because I guess the under 40's are typically healthier donors.  And I can see how that is one viable approach.

http://www.anthonynolan.org/

The other option in England is to go through the NHSBT. The National Health Service Blood and Transplant. If you are over 40 and willing to donate blood, and if you ask them, they will take a small extra amount of blood and type it and put you on the registry. And they will take you up until your 50th birthday. Feels kind of Blade Runner-ish. Doesn't it? All that aside, if you're in your 40's, please go for it!

http://www.nhsbt.nhs.uk/

After thinking about this, I think my preferred approach to attracting donors would be to handle it the way Gift of Life does in Florida.  They accept donors up until age 60. And yes, probably partially because of this, they have a backlog of samples that need to be typed and put in the registry.  I think I'd rather have this backlog of samples that I could fund-raise my ass of to get typed than to ever turn a person away.  There are SO MANY people with blood diseases that can not find matches! Wouldn't you rather have a match from someone in their 50's than have no match at all? I know I would!!  Please click the link here to help Gift of Life get it done!  http://www.giftoflife.org/dc/dina%2Drukeyser%2FMembers.aspx

It's all about attracting donors. Love Hope Strength does drives at Rock concerts and does fundraising by sponsoring people who do amazing things like climb Mt. Kilimanjaro. They have recently worked with the producer Susan Brecker, whose husband, Michael Brecker, the great jazz saxophone player, sadly died of Leukemia. She produced a film called "More to Live For", following 3 people with Leukemia. Her husband, who passed away because there was no match for him, an Olympic Athlete and the head of Love Hope Strength, both of whom had transplants and are doing well.  My hope is that in this Olympic year, maybe someone from the film can come to England and we will ROCK a fund-raiser for them!!!! Please check out:

www.lovehopestrength.org

LOVE TO ALL!

I'm Chairman of the Bored

Holy Crow. My blood counts are coming back slowly. I'm glad I'm feeling perfectly well. And I'm just waiting.  And I know there are folks who would say, "What a wonderful opportunity to get things done! Just watch all the movies you've missed since you had kids 11 years ago!"
I've watched season 1 of Friday Night Lights, Miranda, Outnumbered, Little Britain. I've been through all of Modern Family, and all of Gavin and Stacey.  And I've dented my stack of movies pretty significantly. I think I have a much better grasp of English humor now (save that for another entry...)  

I've made earrings, necklaces, bracelets and read two Barbara Kingsolver books.

I'm also a running joke for the nurses who tell me I should dance around and play Marvin Gaye so that the Neutrophils inside me will meet up, get it on, and make more of themselves.  So we've been dancing here as well.

My kids are quite good at Charades! Or as Ari calls it, "Shreds".  He's so cute pretending to blow up a balloon.

Kismet

I think it would be used correctly in this circumstance. As we are raising funds for Gift of Life to be able to test it's cheek sample kit backlogs, I'm on the phone with my step-mom tonight who tells me there's an article (link below) about them in the Miami Tribune today! It's a really great article about a donor and recipient meeting for the first time. And the donor was initially registered through Gift of Life! Go Gift of Life! Isn't that Kismet? I think it is.
Gives me chills and makes me smile...


http://www.miamiherald.com/2012/01/02/2570966/bone-marrow-transplant-donor-recipient.html

The Matzoh Ball

Finally got some sleep. Maybe 5 hours and then one this afternoon. I woke this morning with a high fever and had the rigors again. The TOTAL shakes. And my blood pressure is so low! Like 85/55. I'm getting tons of fluid and a new antibiotic but the BP is still up and down.  Sitting here I'm again thinking,  "I never ever had ONE symptom of Leukemia."  Total fluke that it was even discovered. So, it's still, soooo suuuurreal when I'm not well because I, for sure, have symptoms of chemo!  But Nurses/Docs are so good and on top of it. But, still, don't ever let your guard down in a hospital. There's always too much going on and remember, people are human. As they said on Friday Night Lights (my new TV addiction), you need an Advocado.  Even if it's yourself some days...

So, rigors for some reason always make me emotional. I shake so much, it just makes me cry. And today my memory has been so jogged by the old friends from Scarsdale that have contributed to my Donor Circle it made me re-remember the great importance of my Circle of Friends when I was growing up in an unstable home. I cried a lot there, often until shaking, and it wasn't until later that it was realized by doctors that my mother actually had  Borderline Personality Disorder, leaning toward psychosis. And my sister and I had been living under that, undiagnosed, for our whole lives.

In junior high and high school I took GREAT refuge in my friends and really feel that they raised me. Kaethe, Allison, Susanne, Andrea. Mothers to me.  And there were the boys that kept me laughing. Emerson, Stuart, the Peters. They were also the ones who witnessed it all. And they were the ones who told me I was OK. They swooped up my sanity and kept it alive enough for me so that I could later fully retrieve it, grow up, and have a family. Yup. They really did that for me...

And in a way, this whole time with the cancer,  I have never accepted that I have Leukemia. I haven't wanted to. (Well, who would?)  But somehow reaching out even further afield now, past my address book, to friends and family on my FaceBook page, and The Gift of Life Donor Circle, I think everyone I know now knows! I've heard from people from EVERY step along the walk of my life! So, only in doing that, have I had this gift of friends, (my usual and very effective form of comfort), come back to me and say, "Yeah. This is crazy. We're going to help. And you're Ok".

Isn't there that scene in Seinfeld where Jerry says to George, "That's a big matzoh ball you left hanging there"? It was right after George told his, deaf in one ear girlfriend, that he loved her and when she didn't respond, he said it again, thinking she didn't hear him. And she responded by saying, "I know. I heard you"... Maybe that's what this blog entry is about. Did I get over the fear of the matzoh ball?  I think I did!

This Is How Nice People Are

It felt good to send out my New Year's I Love You's to everybody.  Just making one-way cyber contact made me feel better.  Imagine then how much I thrive on actually BEING with people. I'm definitely an extrovert. And in my well-wishing I sent out the link to my Donor Circle that Kaethe created for me on the Gift of Life website
If you missed it, here it is:
http://www.giftoflife.org/dc/Blog.aspx?BlogID=584

We're raising money to help test their backlog of untested cheek cell swabs.  They have 14,000 of them! Nothing to laugh at! In there could be a perfect match for me. If not, then I'm sure for others. So since the Circle was created, friends have forwarded the link to friends. And so on and so on. As of today, we've raised nearly $9000!  It's awesome.  I think though, that the most awesome part for me is each link in this Circle. I think there are as many people in the circle that I don't know as I do know! Friends of friends donating. And this is because people are good and nice and generous. That's a fact! And I've always known it!

The other amazing thing is hearing from people I was friends with in 1st, 2nd, 3rd, 4th grade! I LOVE that!  It is SO comforting! And as well there are folks helping me who I have JUST met! THAT is incredibly comforting too. And of course, all my soulmates in between...

So, thank you. I am MUCH less cranky today. Much much less.