The Curious Case of Benjamin Button

We saw "The Curious Case of Benjamin Button" this evening. It was a lush, full, gentle story and I loved it.

It reminded me that we are ourselves throughout our lives. We grow, change and mature; yet we are still our essential selves all along. Our body is not who we really are. It is what carries us through the many adventures of life, but at some point it lets us all down.

I have felt betrayed by my body in many ways over the past year and a half. I have had my strength and vitality yanked away from me like a rug from under my feet. I am scarred and I limp and I hurt. But I am still me. I feel the same inside; still looking out from the same eyes.

Our society places so much emphasis on youth and beauty. I don't know many people who are gorgeous but I am fortunate enough to know so many people who shine with such deep goodness, fun and honesty. My life is beautiful, joyous and satisfying. So what if I look like I've been through the wringer, been dragged around the block a few times – I have! But I'm still here and so grateful. My body may no longer be a wonderland but it's no house of horrors either. It is a treasured vessel that carries my vibrant soul. I hope it will carry me a lot further.

It is a rare movie that can tell you a story that takes you far out of yourself but then returns you gently back home; thankful to be here. "The Curious Case of Benjamin Button" is such a movie and I highly recommend it to you!

The Easiest Way to Help Find a Cure

Hi Folks! Feel the urge to somehow ‘give back’ to humanity, but simply don’t have the time? Got a computer that’s powered on most of the day, but not always in use? Then let your computer(s) donate their time instead! Step on up and join The Unreal OC team on World Community Grid.

If you're already a member of WCG and want to join The Unreal OC team, then click HERE.

If you'd like to join WCG and become a team member of The Unreal OC, click HERE.

World Community Grid's mission is to create the largest public computing grid benefiting humanity. Donate the time your computer is turned on, but is idle, to projects that benefit humanity! The WCG (World Community Grid) provides the secure software that does it all for free, and you become part of a community that is helping to change the world. Once you install the software, you will be participating in World Community Grid. No other action must be taken; it's that simple!

As of this posting, there are over 417,000 members of WCG with over 1,130,000 devices (computers) donating time on the network, worldwide.

Ema and I are donating CPU cycles during the times our three home computers are on, but not in use, to Help Conquer Cancer, which is just one of the programs offered through the WCG. But, as you’ll see from the WCG Web site, there are other humanitarian and scientific projects that you can choose from as well.

Choose your cause, download the free software, and you’ll automatically become a member of The Unreal OC team!

I’ll post periodic status reports on this blog, but you can also visit the WCG site anytime to see how our team is doing and to check your individual contribution.

And by the way – tell a friend! Anyone can join WCG, and The Unreal OC team. Once we get about a dozen members we can join in on team challenges, but more on that later.

Ema and I will be talking more about this during our next podcast, but you can also send us an email with any questions and we’ll be happy to help.

Thanks!

~Tom


How Grid Technology Works
Making a difference has never been easier! Grid technology is simple and safe to use. To start, you register, then download and install a small program or "agent" onto your computer.

When idle, your computer will request data on a specific project from World Community Grid's server. It will then perform computations on this data, send the results back to the server, and ask the server for a new piece of work. Each computation that your computer performs provides scientists with critical information that accelerates the pace of research!

World Community Grid runs on software called BOINC (Berkeley Open Infrastructure for Network Computing,) developed at University of California, Berkeley, USA with funding from NSF (National Science Foundation).

Wound Care - Looking Better Day by Day

That's the medi-cart that our wound care nurse brings with her each week. It's been seven months now since Ema's last operation. Just a little clue as to how long it takes for an open wound to heal after the area has been exposed to radiation therapy. The pain isn't as severe as it was a month ago - thank God for that. Her leg is still swollen though and the venous return issue is still with us. Fluid can't return up the leg like it once did, so it causes swelling throughout the feet and ankle. Elevating the leg helps some, but as soon as she stands up the swelling starts again. This is a long-term issue, and we hope to get physical therapy after the wound heals completely.

If you're at all interested in listening to Ema and I bantering about her cancer battle, and our lives in general, check out The Unreal OC.

Back soon - Tom

All the small moments

Things I did this weekend:

• 9 loads of laundry
• 1 trip to the Farmer’s market
• 1 trip to the grocery store
• Put everything back where it belongs, several times
• Dragged out a storage box of old toys because the kids were bored. They were so excited to see their old toys again they forgot about wanting to go to the toy store.
• Got the Halloween costumes ready
• Refilled the birdfeeders
• Watered the garden
• Made two meals from scratch and heated up four others; two meals that the kids actually liked
• Bought 5 new work shirts for Tom, a sweater for me, a dress for Juliana
• Read 3 bedtime stories
• Sliced a pound of grapes in half so no one would choke
• Kissed boo-boos
• Cleaned the junk out of one cabinet
• Tried to keep a good attitude even though the pain from my leg is very difficult
• Took the kids to the library and showed Juliana how to approach a librarian for help with finding a book
• Gave Sam & Juliana each a bath
• Made sure Nick took a shower
• even the dog got a bath
• Read through the measures and filled out my mail-in ballot
• Washed many, many dishes
• Bought two new rose bushes and sweet-talked Tom into planting them
• Cuddled every child, a lot
• Finished my book
• Chased a skunk out of the house, without getting sprayed
• Watched some of my backlog of Tivo-ed shows
• Made happy memories with the kids involving Dairy Queen ice cream

sundaes and lots, but still not enough, napkins

• Paid bills
• Cleaned up several messes that I saw coming but was unable to avert
• Helped with homework
• Drove all over town at least twice
• Sewed up a hole in Nick’s beloved stuffed animal
• Gave my family all the love I could give

This is why I am terrified that someday I might not be here for my family. I do so much, I can’t even think of it all to list it down here. And it’s not enough. I need to be here to take care of them, for as long as they need me. Which is a long time. I’ve worked so hard to give the kids happiness, strength, comfort, guidance and love. I pray every night that I get to stay here to finish this job I’ve started. I’m doing a good job; I just want to see it through.

It's not just the chores - the running around town looking for the right witches broom for Juliana's Halloween costume, or picking up the dry cleaning. Tom could do that. It's the smaller moments, the attention and devotion to each child that they will someday recognize as the love that only a mother can provide. Yes, it's the big picture, the whole tapestry of motherhood that I'd miss, but it's in my prayers I ask for a long life filled with those small moments. In the meantime, well, the meantime is where I live each day, and I'm happy to say that so far, my prayers are being answered.

Wound Care and Far-Reaching Messages of Hope

Ema has a wound care nurse that comes once a week to check on her surgery site on her leg. The nurse is very kind and helpful, making sure we have the supplies we need to tend to the wound as well as educating us on the proper care. We are seeing progress in this area - no details here, but the wound is finally starting to heal! The pain in her leg is still bad though, and we are seeking a convenient physical therapy option.

It's been an amazing year. "Traumatic" is the first word that comes to mind. Being able to share these journal entries with everyone has been such an important part of coping with all of the stress. It's heart-warming to see that this blog not only gets regular visits from our family and friends, but also from people all over the world. Whoever you are in Finland that keeps checking the site - hello!

For all of you fighting the fight of your lives - keep it up. Or as Ema would say, "Keep holding on."

Until next time. . .

Update - Scan results and another trip to the hospital

Great news - the MRI of Ema's leg and lung CT scan both came back clear! Although the leg MRI still shows a lot of activity in the site of the former tumor, there's no evidence of cancer at all. This is an area that we will keep an eye on as we continue to get scans every three to four months. The clear lung CT scan was a huge relief as sarcomas travel to the lungs first, statistically anyway.

Ema and I went to Orange Coast Memorial Medical Center on Thursday to have her wound surgically debrided and the old stitches removed. Yes, she had to go under general anesthesia for this - who wouldn't opt for sleeping through that trauma?!? The wound is closing up towards the top but it still open to the bone towards the bottom. Ouch! Anyway, her surgeon recommended a wet-to-dry dressing change every 24 hours. I'll spare y'all the gory details - suffice to say it's a rather unpleasant and potentially painful way to tend to a wound, but it's necessary to allow oxygen to enter the site so the wound can heal from the inside-out. The wound care specialist will be at our house on Monday to help with this too. We're hoping that once this wound heals better she will be able to walk better. She's still having such a hard time getting around and is very frustrated with it.

Now, with these scan behind us, we don't have any more MRIs or CTs to worry about until after Christmas! Yay! Life is still so challenging but we're not so terrified right now. Which is such a blessing!

Keep Holding On - Ideas and Suggestions from Ema - # 4

*** Be kind and gentle with yourself. This is not the time to berate yourself for anything. This is a hard time. Treat yourself like you would your best friend; forgive yourself your mistakes, encourage yourself to hang in there.

*** If you can’t get in right away to see a doctor or have a procedure, feel free to call them to ask if there have been any cancellations. Ask politely and keep calling everyday. When you are in the middle of all of these doctor appointments and procedures you just want to get it done and get the answers you need. Everyday that you have to wait is torture and weekends are endless while you wait for the offices to open back up on Monday morning. Force yourself to be the considerate but squeaky wheel.

*** Very often people will have trouble knowing what to say to you in response to hearing about your cancer. Sometimes they will blunder and say something that comes out insulting or dismissive. Try to ignore the awkward words and see through to the friend who is struggling to comfort you the best way they can. Not everyone is able to express themselves well but you can tell if their heart is in the right place.

Keep holding on…

~Ema