The Kanzius Machine - A Cure?

Ema and I discovered this last week and have watched that 60 Minutes video segment a couple of times now. Seems almost too good to be true.

Our feeling is that we hope public awareness will spur a flood of research money into this effort and put the human trials on a quicker track.

Your thoughts?

Tom

Each Day is a Tiny Bit Better

I am done with chemo! YAY!!! Thank God!

I had my last chemo on April 17th, and have been feeling awful ever since. But the great thing is that I know that now when I build myself back up, I get to keep it! So wonderful! I can't wait to feel better. My blood counts have been very low. We were considering a blood transfusion a few days ago, but the doctor decided I could build back up on my own. Each day is a tiny bit better.

Now I just need to get another MRI, PET scan and bone biopsy to make sure the mass in my tibia is nothing bad. I'm trying not to think of all that right now. It's a constant challenge not to be ruled by fear. I have to talk myself down all the time. I tell myself that I wouldn't walk down a scary road especially when I'm already weak. So why let my brain go to a scary place now? I'm all set up to have my tests and if they come back bad then we'll deal with it then. I am taking care of my business but I certainly don't need to fret and worry and borrow trouble. "Sufficient unto the day is the evil thereof." Deal with today and trust that you can do the same tomorrow.

Trust, control and ultimately faith - huge issues!

~Ema

Forgiveness in Trying Times

I yelled at my son the other day over a towel.

He had used a new towel instead of re-using his other towel, (that was still perfectly clean), after I had told him which towel to use.

In my defense, I was utterly exhausted and fed up with the endless laundry our house generates daily. However, that was not a good enough reason to yell at my child like I did. I felt awful and after I calmed down I came in to where he was sitting. I sat next to him and told him I was sorry and asked for his forgiveness.

My sweet boy forgave me and said he understood. What am I teaching my children as I go through this difficult time? I think I am teaching them that we do the best we can but sometimes we still break. But then we put ourselves back together and try to right the wrong we have caused. That there is no shame in admitting an error and asking for forgiveness.

There is great honor in granting that forgiveness as well. I'm not perfect and therefore, my children know that I don't expect perfection from them either.

Later that evening I let him stay up ½ hour later than normal. We read books side by side on my bed, enjoying our companionable silence. He thinks that getting to stay up late was a reward for putting up with his crazy mommy.

I know that the reward was actually for me, getting to spend some happy, quiet time with my firstborn son. It was my reward for trying my best, however far from perfection that may be.

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