Because It's Not About the Bike

In August 2004, about four months into Finn's 3 1/2 years of chemo for Acute Lymphocytic Leukemia, my sister, Tara, came to Ohio. With her she had a bunch of yellow wristbands. LIVESTRONG bracelets. Yellow. Rubber. $1 a pop. Everyone had one. It was like the cool thing to wear.

For awhile. Quite awhile in fact.

I put one on. It was huge and fell right off my arm.

No worries. The child-sized ones fit, and Tara had a bunch of those, too.

So from that day on in 2004, I wore a LIVESTRONG wristband every day. Every second of every day. I wore it when I slept. I wore it when I showered (probably a good thing). It left my arm exactly two times: once in August 2008 when I was getting a manicure at one of those in-the-mall nail salons and the nail girl pulled it off before I knew what was happening, and once in June 2012 when I was at a friend's ranch and we were practicing roping. The wristband got caught and came off.

So twice in eight years did that wristband ever come off my arm. Pretty amazing. And possibly unhygenic.

And then a weird thing happened. In August 2012, Lance Armstrong, he of the 7 Tour de France titles, cancer survivor, founder of LIVESTRONG, said he would no longer fight the doping charges that had plagued him for years.

The next day, my 8-year-old LIVESTRONG bracelet broke and fell off my arm. Just dropped to the floor that morning when I was drying my hair.

Was this a sign? Was it time to stop wearing the wristband? Information was flying around on the Internet, of course. People, especially bike riders, were mad. Rightfully so.

People who donated to LIVESTRONG were mad. WTF was that all about? Since when did donating to cancer become a bad idea? Give me a break.

People vowed to stop wearing their wristbands because they were symbols of shame, cheating, lies, blah blah blah. I even read about a lawsuit where a couple who donated to LIVESTRONG were going to sue to get their money back. Morons.

So while I thought the timing of my wristband breaking was interesting, I didn't hesitate. I went straight to the drawer where we still had a little stash. There was still a child-size wristband waiting there for me. I have it on. And I will continue to wear it.

Because the yellow LIVESTRONG wristband isn't about Lance Armstrong. It's about awareness of a horrible disease that's one of the leading causes of death among children (and many adults, for that matter).

After all of this time, the yellow wristband is pretty much a part of my arm. But several times a day, it will get pushed up too far and I'll feel it. It will get caught in my shirt and I'll feel it. I'll look down and see it. And still, after 8+ years, I remember why I wear it. Because my kid, along with way too many others, had cancer. And that little yellow wristband -- regardless of who created it -- put cancer awareness on the minds of a lot of people who might not have thought about it otherwise. And until a lot more people are thinking about it and donating for a cure, we won't get one.

I'm grateful for the yellow wristband, no matter who brought it to the world.

Five Years

Five years ago tonight, Finn took his last dose of oral chemo.

We didn't have a party. We said a casual, "Hey, did you know you took your last chemo five years ago today?"

We ate ice cream (except Finn who didn't like the ice cream I made. He ate chocolate covered strawberries instead). We went for a bike ride tonight and marveled at where we live. We yelled at the kids just like we would on any other day.

Normal days are so good.

Another milestone.

Another chapter.

We continue to know how lucky we are, and we continue to be very, very grateful.

Thanks for still being along for the ride.

How the Human Mind Copes

Frankly, I'd love to know how the human mind copes with difficulties beyond comprehension.

We are just past the 8-year mark marking Finn's leukemia diagnosis. The week prior, I was restless, and I really didn't know why. That happens sometimes in the weeks preceding April 7 and the weeks preceding August 5 (last oral chemo). I must subconsciously feel that something is going on, but I can't really put my finger on it until I look at the calendar, and then I have a little 'aha' moment.


To tell you the truth, the same thing happens when we have the St. Baldrick's fundraiser. It's a great organization and a great event, and I will continue to support it wholeheartedly, but I get anxious as the actual event draws near each year. Reminders, you know.


Statistically, Finn had the most treatable form of leukemia, Acute Lymphocytic (or Lymphoblastic is what I hear more these days) Leukemia -- ALL. Of course, we are grateful beyond measure that what he had was so treatable.


But the fact of the matter is, there is a percentage of children who will die. Period. And yes, that still gives me sleepless nights after all these years. There is no use telling me to relax, that Finn has done well, that I have nothing to worry about. I am a mother. It is not a reflex that I can turn off (electroshock therapy might cure that, I guess). You would be the same. I guarantee it.


What's behind this post on a beautiful day when Finn is sitting beside me doing his homework with no apparent problems of any kind?


A reminder. A reminder that life is fragile. A friend of a friend from Ohio, whose story we have followed on their blog and who we have communicated with, has gone from being off treatment to now having AML, which is very aggressive and they are in for a tough road ahead. The thought that it could be anyone still takes my breath away.


Reminders. I don't like being reminded. It's an uncomfortable feeling. But it's important. Whatever you're doing right now, be grateful you can do it.


And now, I've got to go play with my kids. And be grateful.

Happy News!

Just got a call from the surgeon. My pathology report was all clear!

Thanks, everyone, for your kind words and support!

Now it's back to business as usual!

Preoccupied

All fall I've not felt the love for blogging. It's not that I don't love all of you--I do, I really, really do--I just feel boring lately.

It's a drag.

I'll tell you what else is a drag, having a 3 inch chunk of skin taken out of your upper right arm along with four lymph nodes.

Just for the record, I'm not a good patient. I'm feeling sorry for myself. But the surgery is over and I'm glad and I fully anticipate that the little melanoma that started all of this drama in October will not have spread.

Let me back up just a tad because the last you knew of the melanoma, I was having it removed on Nov. 8 in the dermatologist's office. Except that when I got to the dermatologist's office, she was not in agreement with my family doctor that we should just do a basic excision on my arm and call it good.

This set off a month-long saga of trying to decide what to do next. The cast of characters included my family doctor, two dermatologists, an oncologist, two surgeons, and a melanoma expert at the University of Colorado. Yes, I know. How many more people can I get involved with over a melanoma the size of the tip of a pen? Leave it to me.

To be fair, my lovely little melanoma had some unusual characteristics (OF COURSE IT DID!!!) that made it a bordeline case, and that's what was causing all of the debate. The excision was a sure thing--a bigger patch of skin had to come off. The part up for debate: to do a sentinel lymph node biopsy or not?

The docs were split on their decision.

In the end, after much deliberation and hand wringing--because I am at my very core, a wimp--I went with the excision with a bonus of sentinel lymph node biopsy. And that means that they injected me with radioactive dye to find the lymph node(s) nearest the melanoma site and they removed those for biopsy. I should have the results this week and of course, I will let you know.

But, as always, I've learned a few things along the way and I will freely impart my knowledge upon you.

1. Don't be a dumbass (like me). Got a mole or any suspicious mark? Get thee to the doctor.
2. Get a second opinion. Getting second opinions gives me angst. It's like saying to your doctor, "Thanks, but I don't really believe you so I'm going to talk to someone else who I will believe." But you need to do what's right for you.
3. Be your own best advocate. Again, this can be hard. It was actually easier to do when it was Finn. It felt less awkward to say, "I'm behaving in this manner to protect my child" versus "I'm just being an ass today."
4. Be careful what you read. This one is almost impossible to follow. I stressed myself out pretty badly reading about survival statistics for my type of melanoma, which quite frankly, were exactly the same as Finn's for his leukemia. But as Eamonn always reminds me, someone makes up that survival statistics--let's proceed as if it's us. Done.
5. Take care of yourself. That pretty much wraps up the first four items into one nutshell. I waited too long. I procrastinated. I forgot. I didn't pay enough attention. And all of those things were very close to combining to become a very bad thing. Don't do that.

So my surgery was last Friday. I didn't think I was overly nervous, but I didn't sleep at all well from the moment I decided to have the surgery until the day of. I concocted all sorts of scenarios that mostly involved me never waking up from anesthesia versus dying of cancer. I wasn't quaking in fear, just pondering going under and never coming back to the point that I filled Eamonn in on where all of the Christmas presents were hidden in case he had to do Christmas without me. But here I am. I guess I need to wrap everything now.

Versed is a weird, weird drug. It's what they used to give Finn when he had his spinal taps. When I've had Versed before (sinus surgery and another minor surgery), I've remembered things--it just made me really relaxed, but I was still aware of saying goodbye to Eamonn, being wheeled away, to them talking to me in the OR, etc. This time it was completely different. I remember kissing Eamonn and then I was waking up in recovery. No recollection of them wheeling me away, going to the OR or ANYTHING. And that is disturbing on many levels because Eamonn said I was talking. To who? About what? It's such a curious thing.

We got home Friday evening about 7:45pm and I went straight to bed. On Saturday we went to Declan's hockey game. However, earlier today I realized what a post-anesthesia fog I'd been in because I thought I'd gone to two hockey games that day. I even asked my friend if I made sense at the rink because I truly don't remember most of the game or that day. I do remember the surgeon calling to see how I was. He asked if I had any numbness. I said no. He said that was good because that meant he hadn't damaged any nerves. Um, yeah, I think that's good, too.

By Sunday, the pain meds and the knockout drugs were truly wearing off and I was uncomfortable. But each day is better. I hate not being able to work out, especially during Christmas cookie eating season, but this too shall pass.

I should probably stop eating guacamole for dinner though or else I'll have to put "Lose 20 pounds" back on my New Year's Resolution list and that will make me very unhappy.

The Library Angel is...an Angel

You may remember that back when Finn was in kindergarten, his year started with a lot of struggles as the result of his Sensory Processing Disorder. You may also remember that I wrote about a woman, our school's librarian, who stepped in and made life bearable for Finn during those first weeks of school and while his occupational therapy kicked in and he learned to cope.

I wrote about Ruth, who I called The Library Angel, several times. Yesterday afternoon, our school principal e-mailed us to let us know that Ruth had passed away that morning.

I'm sad, but Ruth was ready to go, and that gives me some peace of mind.

I like the staff at our school--they're a great group of people. But there was something special about Ruth. I'll never forget how she took Finn under her wing that horrible year. She was a safe haven. She listened to him when he was sad or scared. She didn't bark at him and tell him to go back to his seat at lunch. She was exactly what he needed. Exactly what we needed.

Ruth was one of the first staff members I met at the school when we moved here. I arrived late to my first PTA meeting and crept into a seat at the back. Ruth was sitting in the back as well. She swiveled in her seat and with a big smile, thanked me for coming.

We became friends. She was in remission from her first bout with cancer and we swapped stories of different types of treatment--we were both very into alternative options as well as traditional medicine. I worked in the library every Thursday and during the school's book fairs each spring and fall. We enjoyed talking the role nutrition can play in healing. I used to make experimental raw foods and taste test them on her. If it was horrible, she never let on.

The library has so many loyal volunteers, all jockeying for position to have their favorite day. And Ruth was the reason. She was a person you just wanted to be around. Positive, funny, wry, smart, athletic, just a great enthusiasm for life and living.

I'll leave you with a little story about Ruth that makes me smile even as I'm writing it. I know some of you follow Ruth's blog and so as we all read, on April 22, Ruth's daugheter, Sarah, posted that a blockage Ruth had been dealing with was back. This had happened before, but Sarah's post seemed more definite this time--there was nothing else to be done. We were traveling, but every chance I got, I accessed Ruth's blog to see what was happening. There was no update. When we got home, the word was that Ruth was just hanging on. I don't know how to define the state she was in--not conscious. Sleeping. Is that coma?

Anyway, last Monday, after not eating or drinking for weeks and not being conscious, Ruth suddenly woke up and said, "What the hell am I still doing alive? I'm supposed to be dead by now!"

I looked at the person telling me the story. "No way did Ruth say 'hell'," I said. The story teller, who had heard this directly from Ruth's daughter, assured me that yes, Ruth did say hell. And at this, I laughed out loud because those of you who read Ruth's blog also know that Ruth is one of the most Godly women ever and to think of her swearing, well, that's just nuts.

Ruth spent time that day looking at the pictures Bob and Sarah had picked out for the memorial service. She didn't like a few that were chosen and tried to lobby against their use even though Sarah said, "I love those!" Ruth shrugged matter of factly and said, "I guess I won't be there anyway!"

And that was just Ruth. Truly, what an amazing woman and you will never convince me that she wasn't an angel sent here for those of us who needed her. Selfishly, I'll miss her, but it was her time and she was ready.

If you visit her blog today, you'll see that in huge capital letters, "RUTH IS WITH THE LORD!!!" It makes me smile and cry at the same time. I'm smiling for her, but crying for the rest of us.

I can't decide what I like to imagine her doing in heaven--running like the wind or shelving books.

Either way, it's something she loves.

Shaving: Round One

Because hockey playoffs are this coming weekend and that coincides with our favorite charitable event, St. Baldrick's Day, it was necessary to do a little early shaving around here...

Shavee No. 1: Declan

Up in the chair and ready to go. We had the shaving at the rink after practice last night.


Basically, all of the players whose teams qualified for playoffs could opt to shave early.




I think he's adorable bald...all those freckles...I wonder if I can still call him adorable?


Before we arrived at the rink, we were a little worried. Only a few players were pre-registered.



We shouldn't have worried. Good luck this weekend, boys!

Wow, boys. Way to go! To them, it's tons of fun. I hope they know how much good they're doing while they're having fun.

Money is still coming in. A huge THANK YOU to everyone!

Four Score and Seven Years Ago...

So today I went to Finn's CaringBridge page for the first time in...I don't know how long. Actually, I posted there on Finn's birthday in 2009, but I don't think I've been there since. I go there so infrequently now that I always stumble around and try to remember how to log in.

It's weird. How could I forget something that I knew so well? Just like I thought I'd never forget the phone numbers to the clinic that were burned into my memory or the phone number to the pharmacy.

Does time heal all wounds? Or do they just scab over? I'm feeling a little itchy at the moment.

Yesterday I got a phone call from the nurse at Finn's Denver oncology clinic. Another heartrending pediatric cancer diagnosis for a family in a town near ours and would I be willing to talk to the family? Of course!

There were a few things that brought me comfort at the worst times when Finn was sick: one was being able to communicate with so many of you via CaringBridge and hear your messages of support, and the second was the group of "cancer moms" who I became friends with who answered questions and who knew for real what was going on in our house.

It's hard. When I talked to the mom today, I could hear and feel the emotion in her voice. I could feel all of those emotions welling up in me: the fear, the helplessness, the unknown.

There are so few times in our lives that we can say we've walked in that person's shoes. This is one of them. It's an experience I would have preferred not to have had--for my child not to have had---but I will use it and if it can help someone else, I'm OK with that. More than OK.

I have often wondered if Finn's diagnosis was a message to me. And if it was, what am I supposed to do with it? I remember writing long ago that I wished messages wouldn't be sent through my children! Use me. Take me. Let it be be.

But we don't get to decide that.

Which, as a control freak, annoys me to no end.

But I digress.

Listening to this family's story, there is worry and fear, of course, but there are also parts that make me smile remembering our own situation--the family and friends who are rallying around them, bringing them food (I warned them to steer clear of the desserts lest they suffer my fate and gain 20 lbs. on the donated food!), running races, shaving heads, sending notes and cards, the prayers, the love, the positive energy.

So I guess as much as I'm thinking of this new family and Finn's journey today, I'm also thinking of all of you and how you made it all bearable for us.

I hope I can help someone like you did.

The Reports of My Death Have Been Greatly Exaggerated

Last week, I wrote on Facebook about a boy in our valley, Andrew, who had been battling cancer. I was Facebooking about Andrew because we have two local newspapers, both of which are crap by any journalistic standards, by the way, but one of them is far worse than the other. Stories always contain typos, their content is mostly advertising, their writing doesn't even remotely stick to any sort of Associated Press style. It annoys me, but whatever.

Anyway, last week this annoying newspaper reported on its front page that Andrew had died. But he hadn't. And I totally lost it. I was so angry. Can you imagine what that would be like for his family? I sent the editor an angry e-mail. How do you make that mistake? One visit to Andrew's CarePage would have told them that while he was not doing at all well, he was still alive.

I didn't get a reply. Surprise.

The next day, also on the front page, the newspaper ran a correction. The headline read: Andrew Claymon is not dead. I'm totally serious. Not: Andrew Claymon is still bravely fighting. Or anything with a more positive spin--or as positive as you can be when a child is close to death.

I about lost it. I wrote another e-mail telling them to fire whoever wrote that headline AND whoever approved it. In their second "story," the editor wrote about how they printed that Andrew had died because their heard it from a source "close to the family that they thought was reliable." How very National Enquirer of them.

The NEXT day, they ran a mea culpa letter about how awful they felt and how many times that had rewritten that "Andrew is not dead" headline. The fact that they rewrote it and yet STILL printed it is particularly hideous. Tact? Class? Apparently not something they considered.

They are such a crap paper that I suggested they just fold or maybe start following standard journalistic practics which call for sources to be triple checked. I must be so old fashioned.

At any rate, the sad ending is that 18 months after his diagnosis, brave Andrew passed away today of a rare and aggressive form of cancer.

I'm hoping the newspaper handles his actual passing with some sort of grace. I wonder if that's too much to ask for his family.

Six Years Ago. . .

I worked on the mountain all day today and it wasn't until about 4:15pm when I was signing and dating my end-of-season paperwork that I realized.

April 7

Diagnosis day. 2004.

When we went from this:








To this:








One second life was good. The next? Not so much.

That was then. This is now.








And now is good. In fact, it's great.

St. Baldrick's Day--Part 4: The Surprise Ending

We had a huge turnout for St. Baldrick's Day today. The day didn't end exactly how I had envisioned it though. Read on for details.

First, a few pics and details about the day:


Declan, from his early shaving experience on TV8. He has raised $575 so far!


Eamonn in the shamrock shades. He raised $110.

So while some people donated to either Declan or Finn, the two of them together raised an additional $950 for Team Mighty Finn! The whole Team Mighty Finn, comprised of Eamonn, Declan, my nephew Garvin, a bunch of Declan's friends, and other community members raised over $6,000! We're still waiting on the totals for today, but when I left at 4pm, preliminary totals were over $50,000! Amazing for our little town.

On to more pics of the day. . .and the surprise ending. . .


My nephew, Garvin.


Declan's buddy, Jack.


Declan's buddy, Spencer.


And then Spencer's adorable little sister, Tenley, jumped into the shaving fray!



Finn and his friend, Teak.


Declan's friend, Zane. Zane is also Teak's big brother.


Declan's friends, twins Warren and Wylder.


This isn't even a picture of the whole Kid Shaving Gang! Some got away before we took the picture, and some came later. Kids shaving for kids. So cool. You're amazing, kids!


This is Patrick. He and Eamonn have coached soccer together for several years.


This is Patrick's son, Colin.

Shaving, shaving, shaving. Everyone is shaving.


And then. . .

A Surprising Thing happened.


I'll let the pictures do the talking:





















Finn and Cindy, our amazing event coordinator, comparing hair.


After. . .


Finn, Patrick and Colin

Truth be told, I didn't want him to do it. In fact, I asked him repeatedly to wait until next year. Eamonn and Declan had already left for an Avs game in Denver, so they weren't even there to see it--we texted them pictures and hoped they didn't drive off the road in shock. But he was determined. And he loved every minute of it. He has basically been sitting on the couch rubbing the stubble on his head the entire night. Hilarious.

If you haven't donated and were thinking about doing so, maybe hop on over to Finn's St. Baldrick's page and donate there. I told him I'd kick in a bit in honor of his effort today!

And finally, for good measure, I took this:

Finn's scar from the playground scalping last fall. This is his favorite picture from today.

Thank you to everyone who donated! I'm going on vacation with all the money we'll shave on shampoo this year!

St. Baldrick's Day--Part 3: The Pre-Shave

We already have bald people in this house and St. Baldrick's Day 2010 is still two days away.

Each year, our local St. Baldrick's volunteer committee works to do as much promotion of the event as possible. We can put free "ads" in the paper on a community page, we do news releases, and we've always tried to get on the local TV station, which didn't work until this year.

The local TV station is run by Vail Resorts and is kind of like when you go to a hotel and they always have a hotel channel. But the Vail channel is really much more broad and they do all sorts of interviews, cooking segments, they're out on the mountain, etc.

So they had requested that someone come on, talk about St. Baldrick's and pediatric cancer, and then shave heads in advance. Our volunteer leader, Cindy, asked if we would be willing to go on as a family, which of course, we were. I mean, I was willing to go at first, but as the day approached, I was regretting it. I hate being on TV. There's nothing like seeing yourself up close and personal and noticing all of your annoying mannerisms that the rest of the world is subjected to on a daily basis. But it was for a good cause and I didn't have to shave, so away we went.

First, we had to make preparations:






Eamonn sprayed Declan; Declan sprayed Eamonn. They're a good team that way. I can't stand the smell of that stuff.

I was a little worried because I realized if Eamonn and Declan were shaving on air and I was being interviewed while they were shaving, I wouldn't have any pictures of them being shaved. And that bummed me out because Declan always look so cute in the shaving process. Eamonn likes to get that old man/clown shave. It's slightly less cute, but extremely hilarious.

Enter Christine who always takes stellar St. Baldrick's pictures every year. She e-mailed me and said she would be at the TV station taking pictures. Thank you, Christine!

Here are Christine's pictures documenting our morning. It was us, the TV host, Tricia, and the two barbers, Angela and Sandy. Some of the pics are in black and white because Christine couldn't shoot with a flash so the pictures looked better in black and white.


Live from Vail, it's. . .US!


Jabbering and getting ready to shave. . .


Finn jumping around and waving at the camera. He kept looking at the monitor in the lobby. Come to think of it, so did I.


Why does he love this look so? He requests it every year!


Tricia interviews Declan mid-shave.


Eamonn getting the finishing touches.


Declan is almost finished! I want to break into singing "White Wedding" when I look at this.


Try not to be jealous, ladies!


The whole gang right after the broadcast.

But, I think what you're really waiting for is this: video footage! It's in three separate bits:







I actually have two copies of the broadcast--the YouTube ones here and then the version that was actually burned at the station from the live broadcast. Hilariously, when I watched that version, I realized that the TV8 logo was over my face the entire broadcast. It was see-thru, but yet there I was with a big 8 on my face. Nifty. On the DVD version, there's also a little piece that superimposes Declan's head back on the green screen and the weather guy is talking about Declan's hair and freckles. It's hilarious, but I can't figure out how to upload just that portion. Alas, it's a sad thing to be technologically inept.

So now, all that's left is the event itself on Saturday. It will be a long day, but a fun one, and so worth all of the effort. Thank you to everyone who has donated!