C4YW

Mike and I attended a conference this past weekend in Orlando, FL.  It was C4YW (Conference for Young Women) sponsored by Young Survival Coalition and Living Beyond Breast Cancer.

Over 700 women joined the conference, representing nearly every state and 10 different countries.  I attended the same conference in 2006 in Denver -- only 400 women were there.  Incredible how much it has grown in those years (makes me wonder if it is growing due to better advertising... or due to the number of young women diagnosed with breast cancer??)

As the conference approached, I became a bit nervous about attending.  I knew that so much of the event was a "celebration of survivorship" and dealing with "the fear of recurrence"... "fertility after breast cancer".. "finding your new normal"... topics that really don't resonate for me... in fact, these are topics that cut like a knife, an ugly reminder of the realities of advanced breast cancer vs early stage breast cancer.  I dreaded having to wear "the orange lei".

Well, I didn't have to wear orange (they changed the color codes and it's purple now!) and there were separate breakout sessions tailored to the "mets girls".  This made it easy for us to find one another and we were like our own little sorority, slightly related to all the other women, but so much more aware of the ugliest side of the beast we call breast cancer.

We flew down to Orlando on Wednesday, first class (the tickets for 1st class were cheaper than those for coach!)  I have never flown first class before... needless to say, it was a bit of a let-down!  It was nice to board first and to have snacks served to us, but for a 1.5 hour flight, it wasn't really worth the hype. 

Aunt Joan, Hugh and Mary Beth (Mike's family) picked us up from the airport and we met up with Uncle Bud to have a lovely dinner at Sweet Tomatoes (a very cool soup/salad bar place... Nancy, you would have loved it!)  While all too short, we had a lovely visit with the Krater's. 

Thursday, we headed out early to spend the day at Universal Studios Islands of Adventure.  We had a beautiful day for it and we enjoyed the park very much.  The new Harry Potter ride was worth the 1 hour wait and the "Express Pass" purchase (extra fee to skip the line) was worth every penny!  We rode nearly every ride (even the kiddie rides), including Dr Doom Fearfall (never thought I would ride that!  I felt like one of the girls on "the bachelor" trying to overcome my fears and "take a risk"!), The Hulk Coaster (3x!) and pretty much every other ride that was open!  Afterwards, we had dinner at Bob Marley's along CityWalk and then headed back to the hotel.  A quick dip in the hotel's hot tub (much needed after the tiring day at Universal) and I was ready to crash by 8:30pm. 

The conference ran Friday - Sunday.  While some of the sessions were better than others, overall it was worth the trip.  I wish I had the time and energy to help them run that conference... there were so many things that could have been done better... but then again, I have pretty high standards!  We met some really wonderful women, a few supportive men and we learned a few things while we were at it.  The sessions included:

• Living with Mets: Understanding Trauma and Managing Your Stress Responses (Rating: D-)
• Care for the Caregiver: Metastatic Breast Cancer (Mike)
• Metastatic Breast Cancer: Treatment Update (Linda, Rating: A)
• Care for the Caregiver: Men Only (Mike)
• End-of-Life Issues: Creating a Legacy in Letters (Linda, Rating: B+)
• Healthy Living: Food and Fitness (Mike)
• Healthy Living: Food and Fitness (Linda, Rating B)
• Plenary Session 1: Medical Update (Mike & Linda, Rating A)
• Plenary Session 2: Self Image (Mike & Linda, Rating B)
• Plenary Session 3: Nurturing the Spirit (Mike & Linda, Rating A)

The sessions are supposed to be up on C4YW -- if you are interested, you can listen to the pod cast (there were also many other breakout sessions).  I was really glad that Mike came along with me.  It made me feel really supported and it gave him a chance to learn a little bit more and connect with a few others in similar situations.  While they had a few "care for the caregiver" sessions, it became obvious that there really isn't much available out there for "men who love women with breast cancer"... and I suspect they could benefit from some way of connecting... even if it is just to sit next to each other and drink a beer (men don't always like to talk about their feelings, but it has got to be nice to know that there is someone else out there who knows what it is like to have a wife dealing with this). 

Mike, Uncle Bud, Linda, Hugh, Mary Beth (missing: Aunt Joan)

Dr Doom Fearfall

Mike in Hogsmeade (just before we drank Butter Beer)

Mike gearing up for a ride on SpiderMan

Toon Town

Watching for the space shuttle launch from the top of "Me Ship, the Olive"

C4YW group shot

C4YW - attending the plenary session

where did February go?

I know February is a short month, but where the heck did it go?  I can't believe that tomorrow is March!  February was a crazy month for me, but I guess that is a good thing -- it means that I've been living my life and not letting cancer live it for me!  Here's a quick recap of the month of February...

Feb 2 -- chemo
Feb 6 -- fly to LA
Feb 7 -- caught up with Jessica Jarvis (and her new hubby) & Peter G in LA (laughter filled evening, of course!)
Feb 8 -- client mtg in LA... caught up with Jen Maupin and Ella (fun filled afternoon at the beach!)... redeye back to Philly (bad idea... remind me never to take the redeye from the west coast again... while I sleep well on planes, it's not enough time to get a good rest in!)

Feb 9 -- chemo

Feb 16 -- chemo

Feb 17 -- client meeting in Indy
Feb 23 -- week off from chemo!  instead... fly to Orlando FL!
Feb 24+ -- psuedo vacation in Orlando!  I'll do a full post to tell you all about it, but the quick story is that we got to visit with Aunt Joan and Hugh & Uncle Bud and Mary Beth... spent the day at Universal... and attended a conference for young women affected by breast cancer (more to come!)
Feb 27 -- fly home to Philly
Feb 28 -- CT scans follow up to see what the liver and lungs look like!
 
Looking back at February, it's probably no surprise that here I sit on Feb 28, with a miserable chest cold... I came home from my scans and crawled back into bed for 3 hours!  
 
I have definitely been pushing it to the edge.  It is a constant battle between living life to the fullest and making sure that I don't over-do it. I'm still learning to set those limits though -- hopefully I will be more successful at it in March!
 
 
Here's a few pictures... from the snowy cold winter of NJ... to the beautiful spring-like day in LA...
 

 

Another article... with a slightly better outlook

Not sure how I missed this one back in September, but here's a press release from MD Anderson: "MD Anderson study finds increases in 5-, 10-year survival at every stage of breast cancer". 

Funny story (totally unrelated) about MD Anderson... that only my ZS friends will truly appreciate.  While doing an alignment project back in 2001/2002, MD Anderson caused us so many headaches!  It kept falling out of the data set and as it is (obviously) a huge cancer center (little did my naive self know that at the time), we wound up doing rework all weekend long right before a big meeting.  I think I had memorized the DDD# for MD Anderson for years after that (I am sure it is still somewhere deep in my brain!)

Anyways, some points from the article:

Advances in screening for disease detection, better surgical techniques available to more women, and an increased number of therapies that reduce the risk of relapse in patients with both locally advanced and early stage disease, have collectively contributed to dramatic improvements in breast cancer's survival rates, according to a review of 60 years of patient records at The University of Texas MD Anderson Cancer Center.

From decade to decade, the researchers found an impressive increase in survival in all three stages of the disease, as well as overall survival:

Impressive increases and good news across local, regional and distant disease.  Better prognosis than the general stats that you see thrown around.  Still a bit sad that in 2010 we are just pulishing data through 2004, but I guess any progress is good progress, right?

The only thing I find disappointing in this article is the closing line:

"Now, we need to turn our attention to the refinement of breast cancer therapies, with a goal of further decreasing risk of recurrence and death for our high-risk early stage breast cancer patients, and maintaining the control of disease in those with metastatic disease," says Buzdar.

"Maintaining the control of disease" is great, but "finding a cure" would be even better.  I suppose I'll take it though... maintaining control is a good thing... if you can control it long enough, we just might find a CURE.

A Pink-Ribbon Race, Years Long (NY Times article)

This recent NY Times article has me on a roller coaster of emotion. I don't know whether to like it or hate it.

I like it because it resonates so well with many of my own thoughts and feelings.  I can relate to so many of the sentiments and frustrations expressed.  It doesn't just paint breast cancer as a cliche pink ribbon... of course, I hate it for many of the same reasons.  Because it is so painfully and terrifyingly true.

Despite the great strides we have made in awareness and in removing the stigma associated with breast cancer, we have done very little to impact the number of people dying from breast cancer.  The funding for breast cancer research is still 95% focused on early stage disease.  There is more we can do.  There is more we must do.

The article can be found in it's entirety here: http://www.nytimes.com/2011/01/18/health/18cancer.html.   Below is a summary of how well the article describes my own personal sentiments (items in bold are my thoughts and those in italics are direct quotes from the article)
. 

I am a breast cancer advocate but I am frustrated with the sea of pink ribbon waving survivors and the lack of awareness of and focus on curing Stage IV disease

“All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve,” he said. “While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.

"While perceptions of the disease may have changed in recent years, the number of deaths it causes has remained fairly static, said Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston."

Dr. Hebert says that while the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer. “People like the pretty story with the happy ending,” she said. “We don’t have the happy ending. “

[Metastatic cancer is] responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget,” said Dr. Welch, a senior scientist at the Comprehensive Cancer Center at the University of Alabama at Birmingham, who studies genes that suppress metastasis. (Those genes are turned off when cancer is advanced.) “Funding agencies as a rule want to say their research portfolio is successful — they want a return on their investment very quickly.”

I am living life in 3 month segments... unable to plan anything further out than that

But theirs are not pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.

This kind of uncertainty keeps many patients from throwing themselves wholeheartedly into the ethos of hope and empowerment that helps sustain many women with less aggressive forms of the disease.

While there is a ton of support out there for breast cancer, I find it difficult to find a support network because I am every "early stage survivors" worst nightmare

Still, Dr. Hebert, an optometrist in South Windsor, Conn., went to her first support group meeting thinking that as bad as things were, at least breast cancer was not an obscure disease; she would not be alone.

But the room was filled with women who had early localized cancers. Some had completed chemotherapy years ago; they were “survivors.” When one newcomer asked Dr. Hebert for her story, she couldn’t bring herself to tell the truth.


"This woman had just been diagnosed,” Dr. Hebert said of her support-group encounter, “and I couldn’t bring myself to tell her: ‘I have it in my bones. I have it in several parts of my body. My treatment is never going to end.’

“It was a horrible moment,” she went on. “I had nothing in common with them. I was what scared them.”

Recent events have begun to illuminate the battle still left to be fought... and there is definitely hope to be had and successes to be celebrated

Mrs. Edwards’s 2007 announcement that her cancer had become “incurable” was an inspiration to many — it was also why her death was such a blow. “She put a face on the disease,” Dr. Hebert said. “I could explain my situation to people.


New drug treatments are keeping some patients alive for a decade or more, even after the disease has spread. And they can enjoy a higher quality of life than patients did in the past, because treatments are better focused and have fewer side effects.

“Over the past 20 years, we’ve had probably 15 new drugs approved by the F.D.A., and each of them adds an incremental amount to the length of life, “ said Dr. Gabriel N. Hortobagyi, director of the breast cancer research program at M. D. Anderson Cancer Center in Houston.

“I would never tell a patient with a newly diagnosed metastasis that there is nothing I can do,” he said, “because there are actually dozens of things I can do ... and there are many things we can do to control symptoms and prevent complications.”

 Depending on the type of tumor, patients may live for many years — working, raising children, starting nonprofit foundations, doing yoga and even running half-marathons.

Nevertheless, at the end of the day, breast cancer is still a b#%ch

The average patient may receive eight or 10 different treatment regimens in sequence, he said.
 
Stage 4 breast cancer can be treated, but it is considered incurable.

“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”

jealous irony

Oh the irony!   I was incredibly JEALOUS of the women who sat next to me at chemo today.  I mean, she has CANCER... and I was JEALOUS of her!  I can't stop laughing!

But seriously... I was.

As each nurse made her rounds through the room, she exclaimed.... "This is #8!!!  Only 4 to go!!!"   *cringe*

I remember those days.   The motivation of being able to "count down" my remaining chemo treatments... counting down to the day that this would be in my PAST.  That I would be looking forward to the rest of my life.  I no longer have a countdown.... only a count... (22 weeks done!)

Another irony though... I remember that day... the day of my "very last" chemo treatment in 2005... I cried.  I did not cry the day the doctor had told me I had cancer... nor did I cry on the day they tried to surgically remove the tumor from my breast.  But I cried as they disconnected the IV from my hand on my "very last Taxol" treatment.  I cried because the future was so uncertain and scary.  I cried because I no longer had the security blanket of the poison they were pumping through my body.  I just had to trust that I did all I could... and hope that it was enough to keep the dragon at bay.

I am jealous of the women who are counting down their treatments... anxiously awaiting the end of treatment so that they can put this whole miserable experience behind them...  I still trust that I did all that I could five years ago... and I still hope that each treatment I undergo forces the dragon back -- bit by bit.

back posts

Just a quick note to let you know that I just posted a bunch of "back-posts" from the past few weeks.  I know this sometimes confuses people because the posts seem to appear from nowhere... rest assured... you haven't "missed" anything... it's just that I had a largely computer-free holiday (so nice!) and am just getting caught up on my blog! 

cleaning house - belated thank yous

Between the travel and family and recuperating from the cold/flu, we also managed to spend a little time cleaning out the house over the break and I came across a few things that brought smiles to my face and I wanted to share...  thanks for the warm thoughts and well wishes... even if I don't respond right away, your cards and greetings mean a lot to me and I love hearing from my friends.  It means a lot to have such a broad and strong support network and I am so thankful for you.



Cards sent throughout the summer from Blue Route (Philly ultimate frisbee)



homemade cards from Mary's kids (love love love the one from Elena!)

another favorite... what a cute card! (thanks Jen!)