Mystery Reader

This past Wednesday, I had the opportunity to be the "Mystery Reader" at my daughter, Juliana's kindergarten class. The Mystery Reader shows up to the surprise of the children and reads a book to them.

I was conflicted about my book choice. I had chosen to read "Sammy's Mommy has Cancer". It is a book about cancer that is geared toward small children, to help them understand the situation in a clear but honest manner. After I finished reading the book I surprised the kids again by whipping off my hat to show off my bald head. They loved it! Some of the kids came up to rub my head and make a wish, while others passed my hat around to try it on and laugh at how it came down so far on their little heads. One child came up to me and said quietly that his Grandma had died of cancer. I took his hand and said that yes, sometimes that happens and it is very sad. But very often people recover just fine. I told him I was sorry about his Grandma. He seemed okay but I wonder if I awoke an old wound in him.

I believe that it is so important to be carefully honest with our children about what we are going through. They pick up on the tension in the house and know that things are not as they were. It is our responsibility to explain, in ways they can accept and understand. We give them the best possible outlook on the situation, telling ourselves that if things go badly we will explain that as we go too. I think that fear of the unknown is the worst fear and telling a child that things are just fine when they clearly are not is not helpful.

After I read the book to the kids I handed out little treats: animal crackers and little toys. Then, to lighten things up I read another book "DogZilla" which was a big hit.

Juliana was thrilled to have me in her classroom and it was a special experience for me too. Sam had come with me and Nick had slipped into the classroom during his lunch break. So I had my three little ones with me. I shared a difficult experience with gentle candor and humor and then we moved on to the silly stuff. All in all, a perfect afternoon.

~Ema

The Last Lecture

This is not a book review, it's a discovery.

I've been a complete mess for the past three days, and I think I've discovered why. I just finished listening to 'The Last Lecture,' and this thing tore me up!

Of course whatever is going on with Ema's tibia is on the front of my mind at all times these days, so maybe it wasn't the best time for me to "read" or listen to this audio book. I think my timing was a bit off. Perhaps after the biopsy in a few weeks, but it's done - no going back now - it's in my head.

That being said, this book has made me realize some important things that I'm really glad I know right now, at the expense of bringing our situation even closer to the surface. I don't regret listening to it, but it's a book that I'll have to 'recover' from and take its messages into the future while leaving the pain behind.

Randy Pausch did a great job of summarizing his life and his dreams in this book, and he did so without being sticky-sweet about it. He's a realist, and his honesty was evident throughout. It provided him with an immediate integrity which helped me better absorb his words rather than question them as I do from so many self-help authors.

Plain and simple, it just hit so close to home that I began playing too many "what if" scenarios in my head. It's hard not to. I imagine I'd do the same thing even if Ema didn't have cancer. With the disease though, it made it all very real.

Thanks Randy for writing this book and giving your lecture. Thanks for providing us with words and simple wisdom that will live, not only in your children's minds and hearts for years to come, but in ours as well.

Thank you for the offer

This weekend I found myself in a conversation with some people who live up the block from us. One of them, the wife, said she saw Ema get out of the van recently, but didn’t recognize her from her bald head. “How’s everything going?” She said. To be honest, I like being asked this question. For the same reason I enjoy writing about our journey in this blog, I love getting the opportunity to tell our story. It’s therapy for me. It allows me to run through the ordeal in my head, re-examine some of the circumstances, the emotions, and the sequence of events. It keeps the experience fresh in my mind, which for me, is exactly the way I want it to be.

You’re right, I’m not in denial. In fact, if denial WAS a river in Egypt, I’d be on a beach in Australia, or wherever the polar opposite spot of the globe is. I don’t ever want to experience the fear we did at the beginning, but I also don’t ever want to forget it. It’s a strange dichotomy, and one which I don’t expect anyone to understand.

Most of the time my stark realism works well for me in telling Ema’s story, other times, it makes people uncomfortable. During this conversation with the neighbors, I could tell I had the couple’s attention. I’ve told the story enough times to have crafted it into quite an engaging tale. The problem isn’t so much with my delivery, it’s the content. I tend to add in a little too much detail about the leg surgery, the recovery, the medi-port. I don’t do that for shock value, but because I, myself find it fascinating. I suppose it’s the combination of my fascination and obvious grief woven into an inherently uncomfortable subject that makes the story sometimes hard to listen to. Oh well, this is drama folks – hard-edged, real-life, in-your-face reality. I haven’t censored my story yet, and I’m not about to start. I have to be 100% honest with myself, and this also means being just as honest with everyone to whom I share this experience.

When I was done, I looked at both of them and they were quiet. “Did I go overboard? Did I come across too exuberant, too intense? Do they realize I’m done – should I say ‘The End’?” These and a dozen other doubts ran through my mind as I looked at their faces during these few seconds of silence. Then the man looked down at the ground briefly and back up to his wife’s face. She kept looking at me, and it was then I saw her eyes were starting to shimmer. “Oh God, I’d gone too far, I didn’t mean to make anyone cry here!” I smiled, and said – “Hey, but we’ve got today – right?” Which is the circumstantial equivalent of “Hey, how ‘bout them Dodgers?” She blinked – no tears, good. “If there’s anything at all we can do for you guys, please, please let us know.” Her husband nodded in approval, and I smiled. “Thank you,” I said. “I know when people make offers like this that they mean it, and this means so much to Ema and I.”

We’ve been fortunate enough to give that response dozens of times over the past six months. Usually it’s followed up by “We don’t need anything right now that I can think of, but we’ll be sure to let you know.” Fact is, we have every intention of taking advantage of these offers if the time ever comes when we need to. We pray every day that these times don’t come. Real need equates to real trouble in our minds. If the bad times ever do come, the times when we truly need people’s help, then I’ll be speed dialing everyone who has ever offered. Until then, we prefer to do most things on our own. If nothing else, it’s a way of saving all these offers in a reserve for days which we hope we’ll never see.

An Audio Update for a Change

Here's an audio Ema update I recorded last week for Utterz.

Click HERE to listen.

Thanks,

Tom

Hair Today, Gone Tomorrow

Well - It's done and we LOVE it! Ema knew she didn't want to watch her hair fall out, day-by-day and feel self-conscious about it. Plus, she said looking in the mirror was becoming depressing because she looked sicker than she really is! She called Linda and between the three of us, we rid her of all that pesky hair. The kids were great with it - even Juliana said "Mommy, you look beautiful!" Chemotherapy is hard. She has her good days and bad. There's one drug, in particular, that Ema gets to help her boost her immune system that makes her feel flu-ish - ironic, ehe? Besides that, and the general fatigue from the treatments, she's doing great, and her attitude is as terrific as ever. More photos HERE. Back soon - Tom

A Little Kissing Up Doesn't Hurt

Ema's first day of chemotherapy was this past Thursday. Note the chocolates next to her. She brought them as bribes to the nurses so they would be kind with their needles. Hey - attitude is everything, but a little kissing up doesn't hurt either!

Under her right shoulder blade there's a miraculous little, self-sealing silicone device - a medi-port (or porta-cath) that allows up to 1,000 needle punctures without the need to prod around for a good vein to use each time. We are so thankful for this type of technology. She'll be doing chemo through late June once per week - two weeks on, one week off.

Feel free to leave words of encouragement as comments on this blog, and I'll be sure she gets them.

Thanks!

Tom

Chemotherapy

Hi folks - It's been over a month since the last Ema update, and something happened earlier this week that we wanted to share.

Ema visited her oncologist (one of her oncologists, actually - she has a team of them), and he told her he'd like for her to start chemotherapy next week.

This was unexpected since we were told back in November that we could wait to use chemo in the event of a relapse.

Well, the UCLA oncology board revisited her case and decided that, since the tumor was 5cm - the exact cutoff size for recommending chemo, and it was a very aggressive, rare type of tumor, that chemo would be a good thing at this point.

Ema's attitude is amazing. She's not looking forward to losing her hair, but beyond that, she's taking all of this really well.

In a sense, we both feel a little better about her situation because, until this news, it was up to us to make the decision regarding chemo at this time. She was borderline, and the doctors left the decision up to us. It's comforting, in a way, to have the doctors go ahead and recommend what they believe is best at this point. Chemo is pretty nasty stuff, but so is soft-tissue sarcomas. Better safe than sorry.

Ema had chemo before - some fifteen years ago when she had Hodgkin's disease. She lost her hair then, which was stick straight, and it grew back wavy. We're joking now that it will probably grow back in tight curls - ala Freida - the little curly-headed girl in Charlie Brown.

She starts chemo next week, and has to sit in the chair for about 5 hours once per week for her treatments which will last four months - maybe five.

I'm firing up this journal again to keep you folks up to date, and we'll give more details in the next podcast.

Thanks!

Tom