Funk Shmunk!!

It was so nice escaping to North Carolina last month, but for whatever reason reality hit me hard when I returned. You could say I'm recovering from being in a "funk." I'm attributing my "funk" to a combination of the following... the upward trend in my tumor marker, my D Day anniversary (the day I was diagnosed), along with the passing of a friend who was battling cancer herself. My friend EA said it best and I'd like to share it w/ y'all... God got another angel. Rest in peace Natalie. May God hold you tightly in His arms as you are now free of pain and suffering. Many prayers for Natalie's husband Bill, her family and all her friends who loved her.

You know, it's hard to express how I've been feeling over the last couple of weeks. And yes, that means I haven't been returning phone calls and emails... sorry about that. I'm frustrated, aggravated and just flat out pissed off. It's not fair! Who do you know that has fought cancer? You? A family member? Friend? Coworker? It's amazing how many lives are affected by cancer in some way or another. It's just not fair! It's scary, depressing and flat out unfair! Did I mention it's unfair?!?  I'm sure I'll continue to go through my "funks" at one point in time or another, but right now I'm trying so hard to muster up any and all strength I have to fight this disease and get it under control! After this last weekend of getting good news from my PET, celebrating my 9th anniversary w/ my hubby and spending some time w/ girlfriends... I'm FINALLY playing catch up on, well, just about everything.

It's time for me to kick this so-called "funk" and get back into the mind set of kickin' this cancer! So I know you have been anxiously awaiting my PET results...believe me, you're not the only one!! My PET scan came back showing an overall improvement... liver, bones, the whole she-bang (and no, I'm not going to break out into a William Hung song). Anyway, I don't think it was as big of an improvement as my Doctor was hoping for and that's why we decided to proceed w/ the trial drug at the START clinic in San Antonio. To use in a baseball analogy (sorry, no peanuts and cracker jacks in this analogy), we basically hit a double w/ the treatment that I'm currently on, but what we're really wanting is a home run... and we think this trial might be that home run. What I'm really excited about is the trial requires regular scans and images (that they take care of) to monitor my progress... where as now I have to wait on my insurance to approve those scans and images. That of course means a lot of waiting and lets not forget to mention the anticipation of the tumor marker that's "supposed" to be a guide. I gotta say, I'm not having a lot of faith in the tumor marker these days considering the upward trend over the last couple of weeks. Just sayin'! We're still not quite sure what that was all about... maybe my body is still in shock from the anti-estrogen drugs. Regardless, the PET showed improvement... I'll take it!

So the plan is to start the trial in S.A. either the first or second week in November. Until then I've stopped taking all the oral drugs I've been prescribed in order to "detox" which apparently takes 3 - 4 weeks. The only drug the trial said I could continue taking is the Zometa infusion for my bone mets. So I'll keep you posted... the nerves are already kickin' in w/ the thought of the new treatment and adding the travel aspect into the plan. But we'll make it work! If this trial drug is the "miracle drug" everyone is talking about... I'm ready for that home run!! Bring it on!!!

The CCKK Team Shirts are Ready

There are many styles and colors to choose from...men's, women's, kids, and infant sizes to choose.  Can't wait to sport it on November 13th!  (And many other days after that...)

Please note...unless you are a breast cancer survivor, DO NOT buy a PINK shirt to wear on race day.  Pink shirts are reserved for survivors.  Please resepect this tradition. 

These shirts are not reserved for just team members!!  If you have friends, family, co-workers that want a Krewe shirt, send them the link!  It's what all the cool kids are doing.

So log on to http://www.zazzle.com/cckkrewe and get yours today! 

Introducing the CCKK Shield

The CCKK Captain explains our Shield... Thanks EA!!

Some of you may know that many of the krewes in New Orleans have shields that reflect their organization.  So, we thought it would only be fitting to have one for our krewe.  This shield was designed by our fellow teammate, Brandi Wilson, who is also responsible for our team shirt designs.  Way to go Brandi!

Krewe Shield Break Down:

-The name Casey means Faithful & Brave Warrior, thus we used the latin form of those words, Fidelis & Fortis.  She is truly a faithful and brave warrior in this battle against cancer.

- Per unitatem vis is latin for "through unity, strength." Together we are united in this battle against cancer.  We may not be able to take chemo treatments for Casey, but we can show her that we're on her team and support her.  Komen Austin Race for the Cure is one way we're doing that!

-Palm trees recognize Casey's love for the beach and her roots in the Rio Grande Valley.

-The Sword symbolizes the warrior strength we all possess.

-CCKK recognizes our Krewe initials.

-5 Stars indicate Casey's status at "The General."

So there you have it!  

Click... Check... Click!

I wasn't planning on posting an entry today... even though I had a PET and CT yesterday, I won't get the results back till next week.  So I don't have much to report.  Yesterday was a pretty average scan day... no carbs after noon the day before (which makes me realize how much I LOVE carbs) and of course fasting after midnight.  Mental note - try to schedule an earlier scan next time.  My appointment was at 11:45... 3 hrs later I was starving.  The nurse offered me juice and crackers because some people feel "weak" and "unstable" after going so long w/out eating... I told her that wasn't a problem.  Crankiness is my main side effect of not eating.  Nothing Amaya's half off appetizers can't cure!!  Mmmmmm, mexican food!

Other than that, I thought I'd share the following conversation w/ the Tech who was administering my CT Scan...

Tech:  Okay, I'm going to run through some things to make sure nothing has changed since your last CT.

Me:  Sounds good.

Tech:  I see you have no history of...

• Diabetes (check)
• High blood pressure (check)
• Heart disease (check)
• Hypertension (check)
• Blah (check)
• Blah Blah (check)
• Blah Blah Blah (check)

Me:  That's correct

Tech:  Okay, you seem to be pretty healthy

(awkward silence)

(crickets chirping)

Tech:  Well... (long pause)... except...

Me:  Right, except the cancer!

Tech:  Right

(awkward silence)

(crickets chirping)

• Cancer (Click, Check, Click)

Me thinking:  That was a bad check wasn't it?!?

Alrighty then!  Glad we got that established!

(Cheez It Commercial)

Tumor Marker Update, PET Scan Scheduled, T-DM1 Trial... OH MY!

After my tumor marker increased AGAIN this week (yes, we're up 15 points to 320), we FINALLY scheduled another PET scan to see what's going on.  We gave the new cocktail a 6 - 8 week period to "kick in" and do it's thing, but because the tumor marker has been fluctuating, we need to see what's going on. 

 

In the meantime, we've had a backup plan brewing!  Yesterday Jason, Marion and I visited the South Texas Accelerated Research Therapeutics (START) Center down in San Antonio to find out more about a clinical trial using an experimental drug known as T-DM1. 

 

A quick intro about START (per http://startthecure.com/index.php):

South Texas Accelerated Research Therapeutics (START) directs clinical trials of novel anticancer agents using a high quality and innovative information technology infrastructure to ensure accurate and rapid clinical trials in a setting that emphasizes personalized and compassionate clinical care. The mission of START is to accelerate the development of new anticancer drugs that will improve the quality of life and survival for patients with cancer. Our drug development program is not only furthering cancer research, but also offers hope to patients facing the toughest cancer battles.

 

Thanks to the best mother-in-law in the world, here are a few excerpts from some of her internet research on T-DM1...

 

According to Caring.com, T-DM1 is a 2-in1 "Trojan Horse" therapy in which Herceptin zeroes in on the cancer cells and delivers a chemotherapy agent that stops cancer cell division.  Haiken proceeds to explain that Oncologists don't like the term "miracle drug," and try not to use it -- but the word miracle was in fact used when researchers presented results of a Phase II trial of T-DM1at the Breast Cancer Symposium in San Antonio. 

 

And according to http://www.reuters.com/, Women with an aggressive type of advanced breast cancer can live significantly longer without their disease getting worse if they are treated with an experimental "armed antibody" drug.  T-DM1 is a new kind of so-called "armed antibody" drug that can carry a cell-killing payload into cancer cells.  It combines trastuzumab, an antibody and the active ingredient in Herceptin, with the agent DM1 -- a derivative of an extremely powerful type of chemotherapy called maytansine.  "Maytansine was a chemotherapy that was being developed in the 1980s, but it was so toxic that they shelved it," Hurvitz told reporters during an EMCC briefing.  "So what they've done now is to figure out how to link it to the trastuzumab" so that it is not activated until it reaches the cancer cell.  "The magic is in the link," she said. "The whole thing is internalized within the cell. It's actually quite unique."  The fact the drug delivers its toxic payload directly into cells is also thought to be key to why it causes fewer side effects like hair loss and low white blood cell counts.

 

Ummm, "fewer side effects like hair loss and low white blood cell counts."  BOOYAH!!!  Is it possible that I dodged another bullet in the fight to keep my hair???  If not, I'm still planning on that head shaving party!  I tell ya, any excuse to throw a party, huh?!  ;)

 

So yes, I'll proceed to have my PET scan tomorrow to see what's going on, but it's looking like this trial might be my next course of action.  I'll be sure to keep you posted.  And hey, traveling to S.A. for my infusions can't be that bad... maybe I'll finally get a chance to see if the Alamo really has a basement!!  I'm almost ashamed to admit what movie that came from!  Ha ha!  ;)

Little Pink Houses of Hope - Nags Head, NC

Jason and I just got back from an AMAZING week in North Carolina!  It was by far the most relaxing vacation I've ever been on and it made me realize how desperately Jason and I needed that!  We have Little Pink Houses of Hope (LPHOH) to thank for making this memorable trip possible! 

 

Throughout this last summer, LPHOH provided week long beach retreats to breast cancer patients and their families.  I applied and we were one of 7 families that were selected for the retreat in Nags Head, NC.  In an earlier blog entry I said, "you have no idea how I wish it was on different terms."  Yes, that is true, however, I feel truly blessed to be the recipient of such an amazing experience.  The overwhelming support from the community, the volunteers participating on the trip and the donations that were made to make this retreat happen, brings tears to my eyes. Seriously, my heart can't smile any bigger!  And speaking of the volunteers, there was one in particular volunteer that I have to mention... Karen, thank you so much!  Jason and I really enjoyed spending the time we shared w/ you!  You made the retreat in Nags Head even more special... thanks for dedicating your time, energy and heart into making this week so special to us!  

 

This trip also provided an amazing opportunity to hang out w/ family friends in Raliegh.  This is a shout out to the Keatings and their incredible hospitality... thank y'all for everything.   And while we were passing through Raliegh we also had the pleasure of meeting my "long lost cousin-in-law."  Steph, I'm so glad I finally had the opportunity to meet you and your family! 

 

I've attached a few pics from the trip.  Unfortunately I didn't capture how beautiful NC is right now... everything is just so green.  And no, I'm not talking about the environment... I'm talking about the color!!  That's something I haven't seen in Texas for awhile.  The pine trees that lined the roads driving to the Outerbanks was just beautiful.  While we were there it rained off and on and while everyone else was ducking for cover, J and I were dancing in it!  Fortunately for y'all, I DON'T have a picture of that!  And I'm sorry to burst some of your "Everything is Bigger in Texas" bubbles... NC has us beat on something.  I know, I know, but don't worry... that doesn't necessarily mean it's better!  I'm surprised it's not their state bird, but they have gigantic mosquitos.  Yikes! 

 

Thanks again LPHOH!!  An AMAZING retreat that provided a break from the daily grind of fighting cancer... emotionally, physically, financially.  I feel fresh... rejuvenated... alive!  And forgive me, but I decided to "tweak" your motto...  ;)

 

Live Stronger.  Laugh Harder.  Love Deeper.  Lets Kick Some Cancer Ass.