A Cranky Bitch I Was All Day

It was kind of lucky I was in a room all by myself today, not exposed to the greater community. Who knows what might have happened?  But I feel much better now because I got my period. And if that's TMI, I totally get it and you can stop reading this post pronto. But there's something important here, about life, women and health, that I just need to write about. So stick with me if you can bear it.

I haven't had my period since August.  And I assumed that POOF! it was just gone. I'd been very consistent for years, and then that was it. I mentioned this lack of period to two doctors to not much concern. They kind of looked at me to say, "Lady, you got way bigger problems than that."  And I guess I agreed, but it didn't keep me from still thinking about it. When women are menopausal they take care of themselves in certain ways, and I wanted to be part of that group. I wanted my doctor to at least give a shit about it.  Because, despite being a person dealing with cancer and it's treatments, I'm still everything else I was before this all began. And I always thought that when my periods started to wane I'd have a going away party or something. Or a thank-you dinner. But then this abrupt disappearance threw me. I didn't get to have an appreciative glass of champagne with the reproductive system that gave me my two boys. My baby soul-mates.

When I was first diagnosed, before I started treatment, the doctor in Chicago said, "You know, chemotherapy will put you right into menopause". She said it with such annoying pity. I can't describe how weird and bitchy she was about it. She made me feel like a sorry sucker.  It prompted me to quickly reassess myself. "Wait!"  I thought, "Do I have kids? Yes, I have kids. Two kids. I'm done having kids. Why is she making me feel like such crap?" And from then on, I kept waiting for my period to disappear. And what was weirder is that they also wanted me to go on the pill. What?  That made zero sense to me and I didn't do it. And through all my treatment in Chicago, I had my period and I was fine.  In fact, I think I got cocky about it. Like, "Ha! See? I can do chemo and not lose my period. I can do chemo and still have my youth and my joie and my sense of humor. So there!" And as a side note, it was switching from this less than compassionate doctor that forced me to take control of my healthcare and ultimately led me to Marty Tallman. Small blessings.

I never really identified with cancer before this year. I never owned it, and only saw it as something passing through me that I needed to release. So then when my period finally did disappear I started feeling less invincible and more involved in cancer and like somebody all mixed-up in the world of chemo. This one effect on my body, of losing my period, out of all the effects chemo has had,  forced yet another label on me, in addition to all the other labels: WIFE MOM FRIEND DAUGHTER SISTER YOGINI TEACHER HUMOR ENTHUSIAST ART ENTHUSIAST NATURE LOVER, ETC... and.....Chemo Lady who lost her period. Yuck!

I hadn't thought much about menopause before this year. I realised that as pesky as periods are, they are my reliable friends. They represent something really magic. The creation of another teeny-weeny human.  A creation in which so many things have to go right. It's totally amazes me that there is overpopulation in this world because it's not easy to have a baby. It's really hard in fact. There is so much emotion, for every woman, around periods and making babies.  There are so many decisions: Whether to decide to have kids, or not?  Can you have your own kids, or not?  Should you have your own or love someone else's like it's you're own? What if you try try try and yet fail? Then what?
Or maybe you're a surrogate and you carry someones else's kid and then hand that baby over?  Maybe you decided to end a pregnancy because you're not ready? Maybe you've been raped? Maybe you weren't careful or you were unlucky? Maybe you don't love the father? Maybe you don't even like the father? Or maybe you'll keep a pregnancy and decide it's better for someone else to  raise it? And what if you do want the baby, but you miscarry? Deliver early? Will you and the baby be well? Survive? And then finally, if you do have kids, will you raise them like you were raised or do something completely different?

These are not light questions or issues. They are poignant and difficult questions and issues of responsibility and maturity. They are what make women beautifully deep thinkers.  This is why I wanted to say good-bye properly. So now I just wanted to thank my period for coming back, even if it's just a cameo appearance, because at least now I have time to plan a party.

One Bead at a Time

Feeling really chemo’ed-up today. Yuck. Blech. It’s GOT to be working... 

London was gorgeous and sunny, and although inside, I sat in the sun and watched it set. I listened to The “Adult Alternative Pop Mix” on the Genius setting on my iTunes today. Just let the computer decide what I should listen to. It ended up being a lot of Ben Harper, John Mayer, and Joni Mitchell.  Then I switched to the Classic Rock Mix and noticed how many Brits helped make me feel better today: Mick Jagger, Graham Nash, George Harrison, Peter Frampton, Terry Reid, Rod Stewart, Seal, The Who, Tom Petty,  Joan Armatrading,  Isn’t it crazy? And the list could go on…

They take very good care of me here. And one of my favorite nurses, Emma, is mine today.  You know the song,  “Close to You”?   (Burt Bacharach. A  GREAT American musician!) That was written for her. She’s an Irish angel. Very Cool and giggly.  Turned me onto Bon Iver and I turned her on to Ben Harper today. So that was productive….  I’m making her a wrap bracelet. She picked her colors: these sort of multi ocean colored Czech glass beads and black leather.  It’ll look good on her pale, pale wrist. And for me, I’m turning making bracelets into a meditation at the urging of my friend Amal; every bead a prayer, or a clearing.  One bead at a time Dina. One Bead at a time.

I Want It

All I want is that transplant.  Dealing with disappointment just ain’t easy.  We have a running joke at our house based on Ari’s favorite phrases: “It’s not fair”, “It’s my turn” and “I’m scared”.   It’s kind of funny because he usually uses the phrase “I’m scared” in association with things that we ask him to do. For example, “Ari. Please put on your shoes”… “I’m scared!”, he replies.  It’s so absurd we can’t help but break out in laughter. Ari included.  And I’ll usually reply, “Oh my gosh your right! Shoes! Not The Shoes! Anything but The Shoes!!”   But I just can’t tell you how appropriate his little phrasings have been feeling to me lately. “It’s not fair”, “It’s my turn” and “I’m scared”.  And it’s all true. But SO WHAT! Right? Right. 

My friend Heidi used a phrase with her kids, years ago, and when I adopted it for my kids, it totally worked: “You Get What You Get and You Don’t Get Upset”.   I suppose it's easier to accept when it’s just a matter of being handed a lollipop and you’re super concerned about what flavor you get. But it’s not totally lost on more “extreme” cases that are out of your control.   Dwelling on it just makes it worse. It’s like when you’re mad at someone and they don’t even know it. Who feels bad? You! Not them! It’s like, the joke’s on you…

Am I mad at these leukemic cells that decided not to go away with the last round of chemotherapy? Well yeah, but that’s why I’m writing all this, so I can take some of my own advice!  But apparently, THIS round of chemo is working off the old adage: “Don’t Get Mad. Get Even”, or “Revenge Sweet Revenge”.  

To have a transplant I have to have 5% leukemic cells or less.  After this last round, I had between 5-10%. How close is that?!  Jeez! But it is what it is.  Those are the numbers.  So, I’m sure that this round of Revenge Chemo will do the trick. And I say it’s Revenge Chemo rather than just Getting Even Chemo because this stuff PACKS A WHOLLOP!!!  

First, they load me up with anti-sickness medication and then start a drip with literally ¼ cup of the most intense chemo I think I’ve had (although I have no memory left, so I could be wrong).  The minute it goes in, my head starts to spin in that really bad “oh no, I’m in High School and I had one beer too many” kind of a way.  And then my body heats up like I must have accidentally spilled the Tabasco all over my burrito and then ate it anyway. And then I get shaky.  Remember the boys in high school who couldn’t sit still and would shake their leg back and forth under their desks? It’s like that, but out of control. And then the whole thing calms down. 

I have to do that 5 times. And today was day two. So Monday will be the last day of chemo. We’ll wait for my blood counts to go down down down and then back up and then another biopsy, all will be good and then to transplant.  (Keep Calm and Carry On. Do I hear the Queen? )

I bought this beautiful blanket in Marrakech. I’m calling it my Transplant Blanket because it is a super happy blanket; brightly colored and handmade but also modern and soft.  The pattern reminds me of happy blood cells.  It’s bright pink, and orange, and yellow and blue and not anything I’d normally buy. But it was shrieking out to me (in a good way) to take it home.  And if, by the way, you’re ever in Marrakech, and you like beautiful stuff (who doesn’t) go to this shop. It’s called 33 Rue Majorelle. It’s across from the Jardin Marjorelle.  It’s not to be missed. (Bring your wallet).

Here is the lovely Ari modeling my new blanket. Cheerful. No?

xox

Postponed...Again.

We got home from this beautiful vacation last night at 2:00 am. And the house phone rang this morning pretty early. I never love answering the house phone because usually, it's a doctor or nurse calling or maybe school. All of which can give me a start. And this time it was my doctor. I have to do ANOTHER round of chemotherapy BEFORE I can even start the transplant process at all because somehow I am not in that beautiful remission that I was in before. UGH! Unbelievable! Stunned, I just asked to doctor to keep talking. Even if he repeated himself, I didn't care because none of it was computing anyway.  Then I handed the phone to Andy. Boy, is he my go-to guy in these situations. When my brain will literally go into this mode where everything sounds like Charlie Brown's teacher. And Andy I know is always sharp. I know I call him a rock, and sharp a lot. But these things are always meant in the finest sense of the words.

Before we left for Morocco I had a meeting with the doctor.  He said that the initial results from my bone marrow biopsy looked very good. We left it at that and that was great. But there are other tests they do on marrow that take longer for results to return. And in these tests it showed that my marrow had 5-10% blasts of leukemic cells.  Most everyone has 5%, but beyond that, things are worrying. I'm not sure when or how this could have happened. I just finished a round of chemo and I'm pretty sure I went into it in remission. My bloodwork looked good, etc... But I guess not.

I think I sounded pretty scared on the phone with the doctor today because he said that in no way is he calling me to tell me that they can't do anything more for me.  And that was a relief. It's just that because they do not plan to do my transplant with the myeloablative chemotherapy ( the really tough stuff that wipes you out) they need for me to be in complete remission or there's a significantly higher risk of relapse after transplant.  So, they would like to do another round of chemotherapy with me before we more forward transplant-wise using a drug I've never had that they've excellent results with in the past.

My fabulous beautiful donor is on hold. God bless them. What a run around for them. And just like I had no information about what was going on with donors 1 & 2, Donor 3 has no information about me. It's just a worrying mystery to them. And I still look so forward to finally meeting them and telling them this crazy story and I hope they are not worrying too much now, because everything is going to be fine.

So, instead of a Leap Year birthday, it's going to be something else. I don't know what yet. All I know is that I go back into the hospital this Wednesday and start this round of chemo with this new drug. I will just put my nose to the grindstone and do it. My hope is that they will let me come and go as before until I'm compromised. And then I will recover from it, I will be in remission, and I will do the transplant soon after that. End of April maybe? I don't know.

I have seriously gone back to the NOT THINKING approach to life. I can't think about this. What's to think about? Nothing! I just have to do what I have to do. And continue to squeeze in the fun parts of life. When life gives you lemons... I am getting a little tired of lemonade honestly. I need a new recipe. A good ol' Long Island Iced Tea would work right now. Think the doctor would mind?

Rocking the Casbah and an Embarrassment of Travel Riches.

When we considered moving to London, the greatest lure for me was to be able to easily travel to all these cool places that are so hard to get to from the States.  And I've been proud of us that we have managed, in the midst of cancer treatments, to squeeze in some amazing trips. It has made the difficulty of all this much more deal-able and kept our family close. So, this trip just had to happen.

The boys had a week off of school before I was to start treatment for the transplant. For days we labored over travel websites and Trip Advisor for where to go.  I really wanted a memory-making trip; an adventure that would linger through four to six weeks in the hospital. But where?  Most Londoners seem to head for the ski slopes for this half-term break because everywhere else that might be warm is either if-y weather-wise or far far away.  

Sadly, I want to like skiing much more than I do like skiing. I know Andy would LOVE it if I did.  I just didn’t grow up doing it and I have a hard time being a really enthusiastic adult while slapping slippery planks onto uncomfortable boots and taking off down an even more slick mountainside with abandon and a smile on my face. I’ve only skied three times in my life.  I’ve only had two panic attacks in my life.  One was on a slope in Colorado.  Fun! 

So, we were looking for the right place for all of us.  The first thought was Provence.  Who WOULDN’T that be right for?  But as we researched we weren’t sure if things would be open, would it be bustling, and would it just be chilly and rainy?  And even though it’s truffle season, I don’t think the kids would like truffles…

So then I became really enthusiastic about going to see the Northern Lights in Iceland.  Doesn’t that sound amazing?  We were all on board until Andy checked the weather and the sunrise and sunset times. Hmm. Three hours of light and below 30 degrees for a week.  Ugh. That’s a weekend trip for sure…

Then we considered the fantasy dream vacation of South Africa.  It’s so great because even though it’s a 10-hour flight, it’s the same time zone as London. Folks just whip there for a week, no prob. But then the prob came when I looked at flights and hotels. That is NOT a last minute destination.  Expensive! So we’ll go when Ari is older. If we’re going to spend big money, he better be old enough to remember the Big 5!

I’ve been dreaming about Marrakech for a long time and when we moved to London I was so excited to be so close and couldn’t wait to book my trip. And then they had a worrying political upheaval last year. I was admittedly selfish because I was upset it meant I couldn't travel there.  But things seemed calm enough there lately that we decided to go for it. We hooked up with another family; our friend Amal and her twins joined us. I immediately downloaded “Marrakech Express” and “Rock the Casbah” and we were on our way...Eight of us headed to the most colorful, chill, humorous, amusing country I may have ever been to.

I didn’t really tell anyone I was going. Just did it. I don’t mean to sound like a Nike ad at all. But there are always so many sides to every decision. Sometimes all those sides are just a pain in the ass and I just want to do the fun thing.  I can be a big worrier and I know it’s probably gotten in the way of my enjoying a few things in my life.  I worry about the kids if Andy and I go away for more than two nights. I worry how they cope when I’m in the hospital—how’s that shaping their lives?  But now I’ve been in for eight hospital stays.  They have survived. They’re super loved. And super well adjusted.

We saw a funny movie two weeks ago. Carnage. It’s directed by Roman Polanski,  and it’s freaking hilarious.  It’s all about what parents go through.  The worry about their children’s well being and how they’ll fare in the community of other kids. How will they ever possibly negotiate their lives when we parents just can’t be around to hover.  And of course, there’s that unconscious worry that exists because we see them as a reflection of us.  How they carry themselves, treat other people, feel in the world…  It’s all about us. Because every time I’ve worried about them, they’ve been OK. They really have!  So now, when I find myself worrying lately, I softly say to myself, “Carnage” and giggle a bit.  As if to say, “Remember! Don’t’ make such freaking big deal about everything. It’s all going to be OK”.

I guess I should have put a Spoiler Alert at the beginning of this entry. Sorry…

Freud & Hockney Forever!

It's funny that I always take comfort in this crazy painting by Lucian Freud called Eight Legs. It usually hangs at the Art Institute of Chicago and I studied it when I took a painting class the summer right before I got diagnosed with Leukemia.  

It was so nice to see it here on loan at the National Portrait Gallery for the Lucian Freud exhibit.  It's obviously a disturbing painting but Lucian Freud rocked paint so well that I always find myself forgetting about content, with my nose as close to the canvas as I can get (without a guard coming to chastise me).  

His skin is fabric is walls is floor....

It was so apparent after seeing this show how excruciating it was to accomplish these dazzling feats of paint. But in photographs of Freud, it didn't seem excruciating to him! He seemed happy as a clam. In his self-portraits, he depicts himself so handsomely. Way more handsome than anyone else he ever painted! In fact, his models all look like they are in excruciating pain!!!   I read that David Hockney calculated that he sat for Freud for 130 hours while he painted the portrait of him below.  I saw the David Hockney exhibit last week at The Royal Academy. From it, it's clear that David Hockney is a happy guy. He also rocks paint, but in a totally different way.  But Hockney doesn't look like such a happy guy in this portrait that Freud painted at all!! And then I read that in return, Freud sat for Hockney for 2 1/2 hours. Haha!  High maintenance!   

What may have been most inspiring about both the Hockney and Freud exhibits is how these guys just never stopped painting. Hockney is 74 and he is exploring with painting on the iPad and his paint canvases now are more huge than ever and colorful and fantastic.

Freud passed away last summer at the age of 88. The picture below is a painting he was in the middle of when he died. Isn't that refreshing? It was written on the wall next to it that his last brush strokes were of his dog's ear; painted as if alert and listening. I love that!

You know how sometimes there's this idea that things need to be all buttoned up before you die? That that's the way it should be done? Screw that! I think we should all always be in the middle of something. Never plan for death. (Except wills, of course, and all that crap). But as long as you can pick up a paintbrush, tap on a keyboard, even just be read to---stay in the middle of something!

I feel such relief, now that I have a donor, that I never have to consider the concept of planning for death again. No matter what, I won't. Just as Einstein said, "you can't simultaneously prevent and prepare for war".  I think you can't simultaneously plan for death and live life. 

Great Good News

Wow. It's a go! Donor #3 is the one for me! News came today that they've passed their medical exam and I am so excited and SO relieved! This has been quite a wait and quite a road and I am now blessed with a 10/10 match from somebody somewhere in this great big and teeny tiny world! We have 10 genetic markers that are exactly the same! Even my first cousins who were so kind to register for me aren't 10/10 matches for me. But somebody else from somewhere else is? I just don't get it! And I know I've had it explained to me, more than once even, but I can't wrap my mind around it. And once again Edie Brickell has begun playing "The Wheel" in my head sound track:

"Somewhere there's somebody who looks just like you do,
acts just like you do.. feels the same way..
Somewhere there's a person in a far away place,
with a different name and a face that looks like you...

Do ya think about who it might be?
Do ya wonder where they are?
In a distant foreign country,
Ridin' round in another car..."

I know of course this person doesn't look like me or think like me but boy, we sure have some crazy stuff in common. For example, HLA markers. Or, our bodies' immune response. And I'm sure, that once I meet this hero of mine (gosh I hope they'll want to meet), we'll discover that we have much more in common than HLA markers. I'm just sure of it.

So, all I can say, right now, late at night in London, is Thank You Thank You Thank You! What a nice person you are!!!!! Number 3, you are a charm!  

Yesterday...and Leap Year.

We'll I sorta did and I sorta didn't learn anything new yesterday besides a little bit of clarification. Mostly it's all quite hopeful really. So I'll take that any day...

Firstly, a definitive YES answer about a donor would never come before 10 days after a donor's medical exam. Whatever tests they do, it takes that long...So that puts us at Friday, maybe Monday. So, NOT hearing anything so far is a good thing, of course. And the donor's blood that was sent to the labs here in London all looked good and acceptable to the Brits.  Also, it seems the donor is quite willing and all queued up because they've asked to be able to donate a day earlier. This means I would enter the hospital on February 21st (oh my God that's 12 days from now, I feel so unprepared!). And I would receive my brand new cells on Leap Year! Crazy! So, now, it's not Thanksgiving, not Hanuka, not Martin Luther King Day, not Valentine's Day, but Leap Year! I asked the doctor if this would slow my aging process, only being able to celebrate my birthday every four years. He kinda, sorta, cracked a smile...

I went to the mall today with Isaac. I bought some new movies to watch at the hospital, including, Singin' in the Rain, The Sting, The Longest Yard and Bruno ( I was looking for Borat but they were fresh out...) I also got all sorts of lovely creams from LUSH (my new obsession. Thank you Andy). And I bought some games that might be fun to play in the hospital with my kids (since we're a little burnt out on Kids Charades). I got Jenga and the Cars version of Monopoly (don't ask).  I've ordered needlepoint patterns (I think needlepoint is making a comeback, and it's very Rosie Greer besides). And I'm considering renting a treadmill to be delivered there. It's 25gbp a week! Who knew! Not bad for a little sanity. I also ordered got a new eyeliner (key when you have no hair) and am stocking up on cool nail polish (also key when you have no hair).

So, I can feel myself getting psyched again. But it's with a bit of caution this time. Which, I guess, is just another puny example of all the big re-growing-up this leukemia process has forced me to do. Remember when you were little and you could just have one emotion at a time? Pure excitement? Pure laughter? Pure fear? I think I was looking for some pure excitement about my transplant. I wanted a straight arrow path. No worries, no hiccups.  But being a grown-up means accepting the hiccups, even expecting the hiccups.  Hiccups can be ok. I usually expect to get them after I've laughed hysterically, or after I've eaten a fantastic meal.  Cheers!

Tomorrow?

Maybe I'll find out something tomorrow?  At least maybe I can find out why it's taking so long to find out?  Today is the 6th and they went for their test on the 31st. That's only a week ago. So strange how the 31st can feel like forever ago, yet this week went so fast?  Anything leukemia related to me feels like molasses... Anything in regular fun life related feels like a feather in a strong breeze!

Tomorrow I spend all day having pre-transplant tests done. And this includes yet another ouch-y bone marrow biopsy. Oh yes, I'm sure tomorrow will go very quickly. NOT!  Plus, I got an email from Kim the transplant nurse (who's got no new news...) but wants me to call her during the day so we can meet and have a "catch-up".  What's that? For what? Why?

Wouldn't it be nice just to please know that my lovely and beautiful/handsome donor #3 is healthy, happy and ready to go?  Wow, would I love that!  I can feel myself getting excited again. Which is good, because I need that excitement to plow through this. It's been way more of a roller coaster than a plow so far.

So, with gigantic pukey butterflies flapping in my stomach and everything that could possibly be crossed, crossed, I'm going tomorrow to hopefully hear something REALLY GOOD!

Not At All Meant To Be Morbid

I came across this article (below) in the Guardian online. I think it's amazing. It from a book by a nurse who worked with and spoke with people she cared for in the last weeks of their lives.  Seems they were all older folks for the most part, who'd lived long lives (phew).  But I have to say that there is nothing much more poignant than when one is faced with mortality.  A lot of people say they'd rather go quick.  But there is something to having a stage in life where you have some time to think about death in a real way.  And as I wrote in the title, I do not mean this to be morbid or sad.  I feel extremely optimistic (albeit nervous) about my situation.  But I've had plenty of time to consider less pleasant options.

Leukemia sounds bad, no matter how you slice it. It just does.  It's taken me a while to realize that research and treatments have, truely truly, come a loooong way.  Leukemia is horrifying but less horrifying than other cancers (does "horrifying" come in degrees? I guess so!)  And additionally, there is something so poignant about stem cell transplants with donor cells because it involves the world. A gigantic community. An international registry of people who give a shit (wouldn't that be a funny way to market joining the registry? "Hey? Do you give a shit? Well, if you do... Join!").

So, I've had this opportunity to have this stage of considering life, in mid-life. And that part of it hasn't been bad.  I see opportunities and I just take them.  There's a lot more "yes's" rolling around in my mind than "no's".  That's a good thing! And my sense of humor is way out in front. It always has been, but now it's out in front with pride.  Also, my affection--out in front with pride.  If I've got something nice to say, I say it. My love for art--out in front. My love for my family--out in front. My devotion to and my great dependence on my friends--out in front. My enthusiasm for nature and other beautiful stuff--out in front. Without self-consciousness. Screw that.

So, check out the article below. It's one of the quickest, most powerful reads I've ever had...
love always.

Top five regrets of the dying

Here are the top five regrets of the dying, as witnessed by Bonnie Ware, a nurse who works with the dying:

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

"This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it."

2. I wish I hadn't worked so hard.

"This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret, but as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence."

3. I wish I'd had the courage to express my feelings.

"Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result."

4. I wish I had stayed in touch with my friends.

"Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying."

5. I wish that I had let myself be happier.

"This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again."

What's your greatest regret so far, and what will you set out to achieve or change before you die?