Taking inventory…

The last four months cancer has had its fun . . . wreaking havoc on those in my life:

A close friend, living with metastatic breast cancer, lost her husband in the line of duty.
A close friend was given the news that her sister was diagnose with a rare form of untreatable adenoid carcinoma with a very low survival rate.
Another friend, also living with metastatic breast cancer, has been fighting for her life on a respirator.
Another friend, whose sister is in treatment, was given word that her suspicious biopsy is almost certainly cancer.
Yet another friend, who was only diagnosed with metastatic disease a few years ago, has had her whole treatment plan yet again changed.
Still another friend, also with metastatic breast cancer, who I had known “virtually” for some time, but only met in person this summer, passed away the morning after being told she had 3 months to live…

All of these friends are so young…all either under 40 now or when they were first diagnosed…

But there are other signs that cancer cannot touch everything in us.
There are signs that it cannot seep into our very pores and poison our souls…

One sister survivor was recently given the news that she is not showing any evidence of the disease that has been residing in her body for years.
Another friend is nurturing a pregnancy conceived after chemo, without ovaries!
Still another friend ~ not a survivor but a warrior as she is a breast surgeon! ~ not only finally brought home her beautiful adopted son but is now also expecting!
And that friend fighting for her life on a respirator?…she is opening her eyes and fighting her way back to us!
And the girl who was given her suspicious biopsy results?...she is going to fight like hell because she will not be alone!

So fuck off cancer . . . you picked the wrong people to mess with!

All the things I am thankful for...

I am thankful for. . .

1. My husband: the fact that he builds a fire every night, takes out the dogs before bed, and makes coffee every morning. I am so thankful that he takes care of me in all the small ways.
2. My dogs: they are sweet, nuzzling, warm, wiggly, smelly, kind, funny, smart, and teach me something new all the time. They have made my life better.
3. Cancer: weird huh? well it made me change so many things and made me a braver person.
4. Hockey!: the NHL Arena has been a place for me to learn and grow as a fan and I have found new friends! And I am now an official Columbus Blue Jackets nerd!
5. My car: again . . . weird . . . but it's cute and I love it and it is almost paid off!
6. My iPhone: okay this is insanely materialistic of me - sorry!
7. That Barack Obama won the election. 'nuff said.

I hope that the coming year brings peace and change. I hope that sanity rules and love reigns supreme. I hope that intelligence and strength are not looked upon as conflicting sides of the story.

And I hope that with each day we are closer to losing fewer and fewer young women to breast cancer.

Happy Thanksgiving.

Another great loss

This year has been a series of ups and downs. The downs have been devastatingly low.
Yesterday I was informed that a friend and fellow survivor, Heather Pick, had passed away at the tender age of 38 from metastatic breast cancer.
She had served on the inaugural Executive Council for the Central Ohio Chapter of the Young Survival Coalition. She served as our honorary co-chair for the first In Living Pink Fundraiser. I will never forget that she showed up without her wig (she almost never appeared in public without a wig) but had not brought her family members. "I didn't know family could come!" We were so amused by her humbleness. She did not want to participate with the YSC as a supportive person, rather she wanted to help us reach more young women through her media contacts and by providing us opportunities to get stories out about the YSC.
Heather als reported on innovative discoveries at Childrens Hospital and the Columbus Zoo. She also lent her beautiful voice a recording of music to benefit cancer research. She did so much in so short of a time.
The Columbus Dispatch did a nice write up today and I am sure there will be more to come. But I will leave you with these words of hers:

Don’t wait. Give someone an unexpected gift
just because you appreciate them.
Take your own loved ones
to a cherished community treasure
or try something completely new.

How old are you in survivor years?

I am preparing to participate in a few things over the next two weeks: participating on the 22nd in an Ohio for Obama cancer forum at OSU (not shure where yet!!) with sister-survivor Cynthia Nixon (yes - of Sex and the City!); appearing the next day on Gail Hogan's Columbus Daytime show to discuss breast cancer in young women; and then the following week traveling to Meigs County to do a presentation on intimacy after breast cancer.
As part of these talks, and in my bio, I always say that I am X number of years out. I find it fascinating how I (and many other survivors) tend to regress in maturity when it comes to telling our survivor years. My 'cancerversarry' is April 12th, 2001. So I am almost 8 years out. 7 years and 8 months to be exact. I would never say I am 7 years out now that I am so close to 8 years. I am 39 years old (ack!). But I would NEVER say I am 'almost 40' or 39 years and 7 months. Hells to the no!! I cling to that younger number with a viciousness found only in wild tigers! By the same token (or opposite token), I reach towards the "almost 8 years out" verbiage with vigor! I know, in my heart, that it doesn't really matter. That I could be 20 years out (my lips to God's ears!) and be diagnosed with a new breast cancer, or a metastic lesion...or worse. I know that in reality the further I get away from my original diagnosis I am not moving closer to a cure. Rather it is more likely that I am moving closer to my next diagnosis.

how i get through the day

okay this is going to be a really cheap shot at posting but I am really stressed at work these days. And one way I get through my days is listening to music.
Well today I was reminded just how much I love U2 and just how freakin' brilliant they are:

And love is not the easy thing
The only baggage you can bring...
And love is not the easy thing...
The only baggage you can bring
Is all that you can't leave behind

And if the darkness is to keep us apart
And if the daylight feels like it's a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

Walk on, walk on
What you got, they can't steal it
No they can't even feel it
Walk on, walk on
Stay safe tonight...

You're packing a suitcase for a place none of us has been
A place that has to be believed to be seen
You could have flown away
A singing bird in an open cage
Who will only fly, only fly for freedom

Walk on, walk on
What you got they can't deny it
Can't sell it or buy it
Walk on, walk on
Stay safe tonight

And I know it aches
And your heart it breaks
And you can only take so much
Walk on, walk on

Home...hard to know what it is if you never had one
Home...I can't say where it is but I know I'm going home
That's where the heart is

I know it aches
How your heart it breaks
And you can only take so much
Walk on, walk on

Leave it behind
You've got to leave it behind
All that you fashion
All that you make
All that you build
All that you break
All that you measure
All that you steal
All this you can leave behind
All that you reason
All that you sense
All that you speak
All you dress up
All that you scheme...

So that's my motto...walk on.

It's that time again....

As I wrote in a prior post, I have a love-hate relationship with October. Right now - I love it. Wait until the end of October - and I will be oh-so-over it!

The YSC has several things happening . . . right now. . . as I write this . . . staff, Board members, survivors, and supporters are leaving Hershey, PA on the first day of three for the Hershey's Tour de Pink to benefit the YSC. You can follow their experiences here on the YSC pages. I expect next Monday they may show up on the morning news shows so tune in!This Saturday night I and several other YSC Central Ohio survivors and supporters will be attending Celebrate to benefit the Vicki Speakman Memorial Fund. The Fund has provided travel scholarships for 4 years and running for area survivors to attend the annual Conference for Young Women Affected By Breast Cancer. The Conference is an amazing experience is invaluable and uber-empowering for a young survivor. As I have always said about it - when you have never seen another young woman with breast cancer. . . to walk into a room with close to a thousand other faces just like yours is awe-inspiring!! Miguel Perez runs the Fund - Miguel is going to have be the subject on an entire post!! - and is a good friend to my family as well as the YSC.

Friday, October 10th, YSC Central Ohio will be holding their annual fundraiser - In Living Pink and tickets are still available. This fun event will raise money for valuable programs and services in the Central Ohio area for young women with breast cancer. Brian and me are major sponsors and several family members will be attending.

The week of October 20th, I will be appearing on Daytime Columbus, hosted by Gail Hogan, to discuss breast cancer in young women. Details are still being finalized. And on October 29th I will be traveling to Meigs County to talk about intimacy after breast cancer to a group of fellow survivors - I am always so thankful for the opportunity to connect to my sisters!So far that is it but I am sure there will be more! I didn't even talk about the movie, Living Proof, appearing on Lifetime television on October 18th, which will show the discovery and initial testing of the powerful drug Herceptin. I am thinking of trying to organize a party to watch it . . .

Football frustration

Okay - I know I am a girl. But one of the things I pride myself on is my cool factor has to have been increased by my love of college football. When I moved south with my mom in '85, my loyalty was for Ohio State University (Go Bucks!). In fact, I have a clear memory of a New Year's Eve (probably '86/87??) celebration in New Orleans, stumbling around with my friends, and OSU was playing LSU in the Sugar Bowl the next day. I was being the rebel, shouting "OSU!" at every group of similarly drunk LSU fans...trying to start a fight. But I wasn't truly a football fan per se. I didn't follow the players or the game all that much.
When I moved to college in Mobile, Alabama I was often asked "Auburn or 'Bama?" I had no idea how to answer. I just said "OSU" and was greeted with "No deary - you must chooooooose."
I stayed true to my yankee roots and held firm to OSU. But then something changed.
I fell in love with Auburn football (War Damn Eagle!) in 1990 while dating an alum. He turned me on to the rich tradition and southern charm of it. The legend of the War Eagle, circling the battlefield. The many chants and songs. The lore of the perfect season while under suspension and no promise of a bowl game. The fun of an in state rivalry (versus the full on "our state is better than your state" of OSU vs Michigan) which pits brother against brother and husband against wife...
I actually started to watch and understand the game. I became more than a 'school' fan - I became a college football fan!
So all of that leads me to where I was Saturday night...hoping against hope that Auburn would pull off the upset and beat LSU, at home on Jordan-Hare field, and under the lights.
*sighs*
It was not to be.
But hey - at least I am cool for knowing how much the game mattered to those boys!
War Eagle boys!
Play on!

The Dash

Today I, along with Brian and several other close friends from the YSC, attended the funeral of the husband of my close friend, Jody Carrico-Martin. As noted in my prior post, Jody is battling stage IV breast cancer. Marty was killed in the line of duty early Saturday morning. Brian wrote about the funeral on the HELP FIDO blog and you can read the beautiful Dispatch article here. The funeral was epic. Rich in pageantry and formality - yet full of personal touches. There were hundreds of officers, a pipe and drum corp to play "Going Home" and "Amazing Grace," and the final call from dispatch for Marty's car. Marty's retired K-9 Unit dog Bul lead the coffin procession out of the church and from the hearse to its final resting place. Later, during the 21 gun salute Bul and all the other dogs present began to bark.
Extremely fitting.
Sherrif Jim Karnes spoke at the funeral about the cover of the funeral program. That there are two years noting a persons birth and death. But what matters most is the dash in between. This resonated with Brian and me. And I made a point to gather the YSC gals in attendance in a group hug and tell them that this moment is why we do what we do - it is why we are together as survivors and to support one and other in all matters. On a personal level, it is why I feel compelled to volunteer with the YSC, and with HELP FIDO. It is why I choose to recycle, eat locally grown everything, and work in research.
Your life is defined in how you live it. Marty lived his in service to the community, county and the country.
My thoughts are with Jody and Kyle, as well as all my YSC family members.
If you wish to help Jody - she has requested Kroger or Giant Eagle gift cards (she has dogs, chickens and goats to feed!), or Visa check cards.
Or you can send a check, made out to Jody Carrico-Martin.
Even notes and cards just showing support may help.
Please send these to:
YSC Central Ohio
7716 Rivers Edge Drive
Suite A
Columbus, OH 43235
or call 614.470.0300
**Amendment: The Dispatch article doesn't mention Jody so I will tell you a couple things. She looked beautiful. I am sure Marty was very proud of her and how she held it together for the service and internment. During the pipe band playing "Amazing Grace" I looked over for her and she had gotten up and laid hand her hand on the casket. It was an image that will remain seared in my memory for when I ever wonder what love is.**

A Shock to the System

So - I planned on writing a post on attending the Stand Up to Cancer telethon in Los Angeles. That was Friday night. It was cool - though I didn't get to meet any celebrities. I went with Lanita Moss - current YSC pres., and 2 west coast YSC-ers, Marissa and Lori. Wonderful gals! And we hooked up with a couple other YSC-ers who were there representing the Network of Strength org (formerly known as Y-Me). It was also great to connect with folks from other like-minded orgs such as i[2]y and Immerman Angels.
Well - all this was overshadowed on my way home Saturday day. I lucked out and got an early flight. Just as I was boarding, Brian called to tell me some awful news: a close friend's husband had died overnight in a car crash. Jody's husband Marty was a sherriff's deputy and was working and riding with another deputy. Rainy humid weather apparently caused them to hdyroplane and flip their SUV. Marty died en route to the hospital.
Jody is living with advanced breast cancer, diagnosed 5 years ago at the age of 30. Her health has been declining. Not that you would really know it as she sits on the local YSC council and does a variety of activities.
I am so devastated for her and angry at this disease. If she did not have breast cancer, losing Marty would be hard enough. If she did not have breast cancer, my first thoughts wouldn't be "How will she pay for treatment?" If she did not have breast cancer then she could just grieve. But I know there is more going through her head.
The Columbus Dispatch has done a nice article - probably appearing in Sunday's paper. If anyone comes across this blog (because I don't think people really read my blog yet), please place Jody and her family in your thoughts for a few minutes.

I have mentioned before that I am the vice-president of the Board of Directors of the Young Survival Coalition (YSC). On many occasions when I have lobbied for cancer research dollars on the federal level I have heard comments such as “When are the American people going to fund cancer research the way they do the Red Cross, etc?” (apparently these folks haven’t heard of Komen or the American Cancer Society).And many of you may have heard about the Stand Up 2 Cancer (SU2C) live telethon this Friday night.

Earlier this summer, Katie Couric, Charles Gibson, and Brian Williams toured the morning talk shows to announce this unprecedented collaboration to raise money via a live telethon. This was inspired I am sure, by the tremendous response post-Katrina and September 11 events of similar nature.According to the site – more than 50 personalities from TV, film, sports and music will be making personal appearances and attending to a phone bank. There will also be a performance of the song “Just Stand Up” – available now on iTunes with the proceeds going directly to SU2C.SU2C dollars will go to a variety of research avenues – including an RFP that went out seeking “Dream Team” collaborations moving bench side research to bedside. I am proud to say that the YSC is participating in this event as a resource for young breast cancer survivors and their caregivers, as well as researchers. As such – I will be in attendance during the telethon!!

I fly out on Thursday, attend a luncheon hosted by Sherry Lansing and other celebs, and then attend the actual event. I don’t think I will be answering phones or on tv but if it means I get to sit next to George Clooney then I will do whatever they ask!I would be so honored if you consider watching the telethon and keep an eye out for me. I would be even more honored if you would consider taking this opportunity to make a donation to the YSC in my honor! Every little bit helps!I am sporting a pink swatch of hair right now so you might spot me! Let me know if you do! The YSC has 4 tickets and so Lanita Moss and I will be attending with two others YSC members. Again – it is Friday night, 8pm (EST) on all three networks.

GEARing up for October

October is unbelievably busy for me. Unless you have been living under a rock, you probably know that it's breast cancer awareness month. As a breast cancer survivor and VP of a national breast cancer non-profit, I have a love-hate relationship with this month. I love that it brings so many awareness opportunities for the YSC. I love that I have many personal opportunities to talk about the YSC and tell my story.
However, I get very pinked-out by ALL the pink products. It started as a few things here and there...the ribbons, the Yoplait lids, Edy's Ice Cream...and then things seemed to change about 3 years ago...now you see pink Cheerios, pink toilet paper, and pink . . . wait for it . . . vacuum cleaners. Last year I even gave a talk about buying pink (or not!) as a form of breast cancer advocacy work. Some consider the shopping a form of fund raising. Others view it as being pimped out as a survivor by some often less than legitimate forms of fundraising. I tend to agree with this view and am skeptical of most pink efforts.
**sighs**
That being said, the YSC has developed a wonderfully supportive relationship with the Hershey's Corporation. Several years ago they decided to do pink cream centered York Peppermint Patties and gave us a sizable minimum donation (none of the xx% goes to xxx organization crap - high minimum donations and no maximum donations are the way to go and the thing to look for if you are going to buy pink!!). Then they stepped in to become a major sponsor of our annual Tour de Pink. Since then they have increased that minimum donation as well as increased the types of products they "pink" out for sale as well as listing us on most of their products year round.
I love chocolate :-)
Anyway - for more on how Hershey's and gear-heads are helping the YSC -check out this blog!

Do spayed dogs get hot flashes?

Our first dog, Maggie, was about 6 months old when we adopted her from Capital Area Humane Society. When we adopted her she was intact, but when we picked her up, as we knew would happen, she had been spayed. For the first couple years of her life she slept in a crate at night. But slowly she made her way into our bed. First she took naps, then when I came home from my mastectomy surgery, she slept at my feet (due to the type of surgery I had I had to keep my knees bent so I used her as a way to keep my knees up), and eventually she slept all nights with us. We always made fun of how wish-washy she was about being under the covers one minute, then out and panting, then back under the covers . . . this would go on through the night. When Sasha came into our lives, we noticed that she too, moved in and out of the covers through the night.
I had hot flashes when I started chemo, and they never completely went away though they did lessen with time. Recently, I had my ovaries removed as part of ongoing prevention and also as a way to finalize the decision not to have children. As fully expected, my hot flashes increased both in frequency and intensity. And I noticed that my nightly temperature fluctuations seemed eerily similar to those of Sasha's.

And so I began to wonder...do spayed dogs get hot flashes? (okay I just got a crazy vibe as I read back through this ending with the question that this post sounds like something out of 'Sex and the City'. I can almost hear SJP's voice in my head as I re-read it!).
I have done some preliminary online research and I am not the first to ask this question. However the answers are incredibly unsatisfactory because they mostly fall into a "no they don't because we are removing their ovaries so no estrogen left to go through menopause." Oh yeah? Because my ovaries are completely gone and I have RAGING hot flashes. So this answer doesn't cut it.
And how would one know? You can't survey a dog. I discussed this with Dr. Mandi over at my other blog HELP FIDO, and she immediately had some good questions one could ask a dog: "Do you find yourself trying to lay on cold tile floors? Do you want to hang your head out the window inappropriately in the winter?"
I asked my mother-in-law about her current spayed female, Belle, and her previous spayed female, Chloe (RIP) and she agreed - both dogs exhibited signs consistent with running hot and cold. And neither of her male dogs have.
I don't quite know where I am going with this other that to say that I find it fascinating.

I can't have cancer - I just got my Facebook account!

I was diagnosed with cancer at a young age, 32, and at the time I was a complete and utter anomaly. I am happy to say that although cancer (esp. breast cancer) is still relatively rare in young people, there has been an amazing movement towards recognition of young cancer survivors having a different experience than that of their "normal age for diagnosis" peers. I am also incredibly proud to be someone that participates in that movement, and even more proud of the fact that the Young Survival Coalition (YSC) directly impacted the push for this movement.

Now that I am getting, um . . .slightly on in years I am able to really appreciate what those who are coming after me (i.e. young cancer survivors being diagnosed now) are doing with their energy and passion. One of these people is Heidi Adams - advocacy co-chair of the LIVESTRONG Young Adult Alliance, and founder and executive director of Planet Cancer, a non-profit dedicated to creating a community of young adults with cancer. Heidi is also a 13-year survivor of Ewing's sarcoma and now is the ripe old age of 39 (um - yeah - that is also how old I am!!).

She has written an excellent op-ed piece on the Stand Up 2 Cancer site. In it she describes this experience of being diagnosed young . . . "To put it simply, young adults like me with cancer have fallen through the cracks on every front: scientific, emotional, clinical and financial.
In Dr. Jerome Groopman’s new book, How Doctors Think, he discusses the following mantra, frequently relayed in medical school: “When you hear hoofbeats, look for horses, not zebras.” Well, that’s fine. Unless you’re the zebra.
For starters, to identify the zebra you have to acknowledge that it is, in fact, different from a horse. And in many ways the unique aspects of young adulthood are as obvious as those black-and-white stripes: from emotional needs, developmental stages and biologic differences, to age-specific issues related to access and delivery of care. "

Something I am always asked about is what it is like to go through this . . . and I try to explain that it is nearly impossible to adequately capture how hard it was. As a young person you simply do not have the tools in your coping toolbox. You probably have not had to deal with a major traumatic event, you probably have not had to deal with a major illness, your significant other has probably not had to deal with a close family member beaing incredibly ill . . . you just lack all these very necessary life skills that would otherwise serve to guide you through your daily movements.

And yet - somehow you get through it. You get up every day, you go to treatment, you may go to work . . . hell you even go to the grocery store (you just forget why you went - but that is a subject for another post!). You go on! And at the end you may look back and be a little amazed at yourself.

And you might choose to get involved in all the various activities supporting others like yourself, or raising money for research or programs . . .