I’m crying right now because I just read this incredible post over at Maggie’s site. Not only does she rave about me and our deep and lasting friendship/what it means to her, but she goes on to explain what the American Cancer Society’s Relay for Life means to her and why she’s doing it (I’ll give you a hint, it’s not just for me).
I can’t believe that I have such a dear friend as Maggie. I’ve piled up a number of failed friendships in my past and lately I seem only to get along best with people at least 15 years older than I. But Maggie’s post reminded me that she’s there, that we’re friends through and through, and it will never end. I know if I really needed her she would drop everything, pack up her gorgeous family and come out here to help me. But she knows that I have an incredible support system here in town among friends and family that are more local. Maggie feels like a sister almost. Since she gave you the whole sappy, heart-felt explaination of our friendship, allow me to tell you how we met over the years:

Most of you know I’ve been “chatting” online for several years now. WAYYYYYYY before there was e-Harmony, Instant Message and texting on your cell phone, I was in an IRC chatroom called #colorado. That’s where I met Maggie, Jim, Steve and Tonia, Tracy and, subsequently, my darling husband. The chat room doesn’t exist anymore (or does it?) but these are just some of the lasting friendships that I’ve maintained from the fallout.

The way I met Maggie really starts out just like the story about the way I met Honey…a girl nicknamed Brina had a chatroom party. We all mustered up our courages and rushed to her house in Denver to meet people behind the delightful mask of alcohol. I partied hard in those days but as I recall, Maggie didn’t drink very much. Anyway, at one of these parties Maggie was there. She had developed a relationship with another chatroomer nicknamed Miker. HAHA! He was cute. I remember partying and playing pool and roaming around the house talking to everyone (someday you should ask Pete for his imitation of me doing this! it’s FUNNY!). I talked to Maggie for a while but I’m sorry to say I don’t remember much of it. What I do remember is the next morning, Miker’s car had been towed for parking illegally in front of Brina’s downtown! Miker was Maggie’s ride and I felt sorry that she was stuck on a “date” with someone whom she obviously felt uncomfortable around. Miker was a nice guy, don’t get me wrong, but I’ve since learned how shy Maggie really is and that night and next morning, her shyness was really going strong. I didn’t want her to feel so uncomfortable so I turned into my honest, most boisterous self and butted into their predicament. I drove them downtown to retrieve Miker’s car. What happened after that is strictly their business but Maggie was super nice and fun to talk to all the way down there!

Fast forward a few years later…

Sure we all still chatted online and had parties together. I vaguely remember another time in Fort Collins when Maggie was dating someone else who happened to live up there (wth was his name? Kail?? he was cute too! Maggie sure knew how to pick ‘em! You should see her husband!). But nothing significant until about 4 years after that initial party…

There is a story of an infamous pre-season hockey game between the Colorado Avalanche and Dallas Stars, to which our friend Tracy got a great deal on group tickets. She gathered together a huge group of us and we all met downtown for the game. That night is the first night Honey and I both displayed interest in each other (and is also the reason why he proposed to me a few years later right before a pre-season game between the same two hockey teams!). Maggie was also there and we had a chance to catch up with each other. As it turned out, we both had single dads who we were both close to, disfunctional relationships with our mothers and a deep, committed passion for early childhood education! We were like the same person living in parallel universes! From then on we chatted regularly through Instant Message and emails. It was uncanny how much we had in common.

Ever since then we’ve remained close. Through hard times and happy times we always found a way to connect over the miles. She moved from Colorado Springs to Gardner, Kansas a few years ago. She came to Honey’s birthday party at the Rio last year (thankfully she and Rich were in town visiting their own family for the holidays) and we got to have breakfast with them and Tracy on New Years Eve.

When she first told me about her honoring me in her involvement with the Relay For Life this year, I was stunned, shocked and incredibly humbled. The very least I could do was go out and walk with her in the relay. So we’ve arranged it at the tail end of our east coast beaching vacations to spend a few days in Kansas City with Maggie and her family. We’ll spend one of those days in Topeka visiting our own extended family but then the following three days are devoted to the Truitts and the Relay for Life. I can’t wait!

A couple months ago Maggie sent me a wonderful gift. See, she runs her own child care center (not day care center…we don’t take care of DAYS we take care of CHILDren!) out of her home. At the time she had two toddlers (including her own darling Julia) and a couple of babies (also, including her own lovely Rebecca). One day during their art time, she had them all make their handprints in paint on a large piece of paper, then wrote ABBEY YOU ARE NOT ALONE in the middle of the page. Then she took everyone’s hands, including her hubby Rich’s, and traced them on a t-shirt. On the back of the shirt she wrote in big, bold letters, WE’VE GOT YOUR BACK! The painting I have hanging prominantly on my refrigerator, the T-shirt’s in my closet and i often wear it to chemo treatments. It’s like a giant hug from my dearest and bestest friend Maggie. I love you, girl!

Check out this video from 60 Minutes last night! First of all, the concept of these nanoparticles doing such specific work on cancer cells is facinating. Secondly, this guy invented it in his garage! And finally, my favorite Dr. Steven Curley, aka Dr. Wizard, at MD Anderson is involved with it and he’s even in these videos!

So that first one is about 13 minutes long and it’s your typical 60 Minutes Feature story.

This second one is an almost 2 minute interview between Curley, Kanzius and Harry Smith, the CBS interviewer.

That’s awesome!

P.S. My mom and I used to think we were famous if someone we knew, no matter how obscurely, was on TV or in the paper or on the radio. We’d scream and should, “I’M TOTALLY FAMOUS!!!” and dance around excitedly. For example, after she legally changed her name to Windy (don’t ask me why she did it!), she’d always celebrate when the weatherman would talk about it being windy along the front range or whatnot. It was hilarious. Although the thrill of those windy weather reports wore out for me rather quickly, I do always think of her when I see it on the news!
Needless to say, now I am FAMOUS because Dr. Curley was on TV! For those of you just tuning into my blog lately, Curley is the uber-liver-cancer-specialist I got to see in Houston when we went down to MD Anderson in December. I still communicate with him via email and FedExing my CAT scans and such when Dr. Kane and I discuss new treatment options. While Kane is the captain of my treatment ship, Dr. Curley is like her First Mate and we get everything approved by him before we take a step because he is more familiar with cholangiocarcinoma than anyone else that we’ve found!

A message from Maggie:
It’s that time of year again! I’m the team captain for my church’s Relay for Life team… and Rich is the team captain for the mens team!

This year, my Relay for Life fund raising efforts are in honor of Abbey Keller. Abbey is a friend of mine that I met back in my college days - she lives in Colorado, has a wonderful hubby, lots of cute pets, a loving family and is currently fighting liver cancer. I’m racing to find a cure for her and for others like her who might someday hear the words “You have cancer.” I believe that raising money for an organization like the American Cancer Society will help us find a cure for cancer - so I’m soliciting your contribution.

Can you believe that more than 1.3 million new cancer cases are expected to be diagnosed in the United States this year? Those are staggering statistics, but there is hope. Each of us can do something to save lives and help those already fighting this disease. That’s why I’ve decided to take action against cancer by supporting the American Cancer Society Relay For Life® event right here in my community.

Relay For Life is an overnight event that brings our community together to help support the American Cancer Society and its lifesaving mission to eliminate cancer as a major health problem. The Society works hard every day to prevent cancer and save lives by supporting groundbreaking research, affecting public policies that protect us from cancer, and educating people on how to prevent or detect cancer early. The Society helps people with cancer right here in our own community. And our efforts at Relay For Life can help the American Cancer Society to keep working toward a cancer-free future.

I want to invite you to show your support in the ongoing fight against cancer by joining us for this year’s event. Please click on the link below for more information, including details on the inspirational Survivors’ Lap and the moving Luminaria Ceremony. We hope to see you there! If you can’t join us, will you please visit the site and make a donation to support our efforts? Either way, you will make a real difference in the lives of people facing cancer and in the lives of the people who love them. Thank you!

For state fundraising notices and the American Cancer Society’s Privacy Policy, please paste this link into your browser: http://www.cancer.org/docroot/SU/su_0.asp

Click here to visit my personal page.
My personal fund raising goal is $250. No donation is too small.

Click here to view the team page for FirstLight Women

Here is a link to Rich’s mens team!

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A followup message from Abbey:

That’s Maggie in the picture above on the left in the blue tank top, next to her hubby Rich and 1st daughter Julia in front of her –baby Rebecca’s hiding in Mag’s tummy)

I remember when Maggie walked in this event last year she was like 15 months pregnant, in the middle of July in the middle of Kansas, sweaty, uncomfortable and walking in the middle of the night! I thought she was crazy and I told her so! She agreed but assured me it was for a good cause.

This year, she told me that she’d be walking in my honor (I think I mentioned this to you a month or so ago). She says that she and all the women in her bible study group out there in Gardner, KS talk about and pray for me and Honey all the time. Apparently, this lovely group of ladies know me way better than I know them (since I’ve never even met them!). Words cannot explain how deeply this touches my heart that she is walking in my honor this year. I no longer think she’s crazy. I think she’s gorgeous. I’ve always thought so but even more so now.

So here’s what I want you to do. I want you to go to her site right here, and support her and her team in any way you can! You’ve got till mid-July so you can plan ahead if you want to. Come to think of it, it’s not a bad way to spend your tax return! *hint* *hint*

Or, if you can make it out there, Honey and I are going to fly out and join Maggie and Rich in the walk itself! It will be at the tail end of two other back-to-back vacations we’ll be taking at the end of June, early July, but it will definitely be worth the extra effort! So come on out and walk with all of us! It’ll be fun!

We made it to Santa Fe! There’s nothing like a 3 hour nap to follow a 6 hour car ride! We’re well-rested and ready for dinner.
But real quick I wanted to update you all about the Cholangiocarcinoma Foundation’s website.

Two of the moderators of the site commented on my previous post about it. They were so kind and inviting so I went ahead and registered. I’m going to wait to post until after our vacation since I’m using this time to put some distance between me and this disease. In the meantime I thought I’d browse their site a bit deeper to find GOOD STUFF! SUCCESS!

I found a whole forum category where posters tell about their Good News regarding CC! There’s all kinds of hopeful therapies and other stories of patients that have defied the odds with this curse. That’s exactly the kind of stuff I should be reading. It makes me hopeful and strong again! Horray!

You know when you check into a hospital for a procedure, a test or an ER visit, after you fill out miles of paperwork they hand you a couple of pieces of paper to keep. One is usually that dreaded “Five Wishes” pamphlet that, should you choose to take the time to fill it out, may serve as a makeshift last minute will and testament. And the other is something called ‘A Patient’s Bill of Rights’ which typically explains that you have the right to complete and comprehensive care whilst visiting said hospital. Some people find this bill necessary to their own emotional well being because they’ve felt mistreated by the medical establishment as a direct result of their particular “status.” I think this is most common among patients of low income status, people who have AIDS, gay and lesbian patients, etc. Until recently, I never thought I’d fit into one of these categories of patients who feel desperately left out.

Overall, I have received excellent care from my doctors and nurses in the past 6.5 months (not counting a couple of doctors with super lame bedside manners!). But I have felt, I don’t know exactly how to describe it…a severe lack of understanding of my status as a young adult with such an advanced stage of cancer. When I met with that group of other young adult cancer survivors early last month, one of them related his story about after he was first diagnosed with testicular cancer, and he went to another doctor for a second opinion, the doctor actually told him, “You can’t have cancer. You’re too young!” Ha FREAKING HA, Dr. Smarty Pants. Sure, that may just be something he thought would be funny and light hearted to say to his new young and spry-looking patient. But look at it from a different perspective: if an 80 year old man came to him for a second opinion of his testicular cancer diagnosis, would it be just as acceptable for him to say, “AH! No wonder you have cancer! You’re so old, it’s a wonder you made it this long without getting cancer!” That would be considered disgraceful, tacky, and, possibly, grounds for some kind of lawsuit.

This sort of thing goes on all the time all over the country. I’ve found it very hard to find adequate emotional support for myself and Honey as young adults dealing with such an advanced stage of cancer. There are all sorts of support groups out there for geriatric and pediatric cancer patients and the majority of the medical community I have been in touch with seem only able to offer these to me. What would I have in common with a 75 year old woman with a brain tumor or breast cancer? Sure, chemotherapy is chemotherapy and we can all bitch and moan together about how fun that is. But what about our futures? That’s where we lose our common ground completely.

And that’s just the tip of the iceberg. But I am the kind of person who would rather do something to help motivate a change in this area than sit and bitch for hours on end about how unfair it is. That’s really what this post is supposed to be about.

Today I received a notification about this site, SeventyK.org. It is an advocacy group representing the “70,000 children, adolescent and young adult patients in this country who are diagnosed with cancer every year.” The group is devoted to raising “awareness to the lack of rights that these patients have in the organized medical world.” They have composed a Bill of Rights specifically designed for the pediatric, adolescent and young adult cancer community. Here is the bill in its entirety:

We are neither pediatrics nor geriatrics,
we have unique needs- medically, socially, and economically.

However, the rights and dignity of adolescent and young adults are
equal and vital to all individuals.

We deserve to have our beliefs, privacy,
and personal values respected.

Access to care is a right,
not a privilege.

Our rights, as we perceive them to be and intend to preserve them, are:

The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.

The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.

The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.

The right to be informed about available clinical trials and given reasonable access to them.

The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.

The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.

The right to “generationally applicable” psychosocial support.

The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.

The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.

The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.

Click on each item above to read more details about what all it entails. I think this whole bill is not only appropriate but completely necessary for all cancer patients between the ages of 15-39 and the medical community across the country that works with these patients.

SeventyK’s goal is to not only raise awareness of this issue but to “have the Bill of Rights implemented at all hospitals, so that in the future when a young patient is admitted this Bill of Rights is the standard for any young adult cancer patient.”

Please take a moment and click here to help me support this Bill of Rights! The more digital signatures they get, the stronger it becomes and hopefully, someday in the not-too-distant future, we can offer this Bill of Rights to the 70,000 young adult patients newly diagnosed with cancer. Thank you!