Another Day... Another Drug

Well, it's looking like we have some catching up to do... 

I'll start by saying that I have officially been pulled from the clinical trial.  (Insert gasp)  I know, I know, but it's not what you're thinking... I swear I didn't harm the gentleman blaring Christmas music.  What?!  Not what you were thinking??  Lets move on... the week before last (4th week of the clinical trial which was also the last week of the 1st cycle), my right side started hurting.  And if I were to describe the pain, and I know this is going to sound weird, but I could actually feel my liver quiver.  For whatever reason, my liver was twitching/spasming.  And it wasn't a "holy crap I had so much fun partying last night" kind of quiver.  Not that I know what that feels like.  Again, lets move on... So we know from past experience that that's not a great sign.  Thankfully Dr. H was able to squeeze me into her already busy, booked day.  She thought it would be best to order a CT scan to see what was going on.  During our visit I was given the slightest bit of hope that this could actually be a good thing.  My liver could be reacting to cell or tumor DESTRUCTION (man, that has a nice ring to it).  Unfortunately that wasn't the case this time.  The CT showed even more cancer on my liver compared to when I started the trial.  (Insert Debbie Downer music)  Thankfully my lab work showed great numbers and everything else is functioning the way it should... except of course the cancer. 

So where do we go from here?!  Well, like I said before starting this clinical trial, at least we have a backup plan.  We know that the meds I was on prior to the trial were working, so lets go back to what we know with a minor tweak here and there to get things back under control.  So for those of you keeping track of my drugs, this is what my chemo cocktail is looking like...

Herceptin (infusion every 3 weeks)

Zometa (infusion every 4 - 6 weeks)

Tykerb (oral daily)

Femara (oral daily)

And introducing the new drug to the cocktail... drum roll please... 

Navelbine (infusion weekly)

I started this new concoction last week.  With it of course came all the the anticipation and worrisome of how I'm going to react to this new drug and it's side effects.  To list a few of the side effects...

• Allergic reactions like skin rash, itching or hives, swelling of the face, lips or tongue
• Low blood counts (you may be at increased risk for infections and bleeding)
• Signs of infection - fever or chills, cough, sore throat, pain or difficulty passing urine
• Signs of decreased platelets or bleeding - bruising, pinpoint red spots on the skin, nosebleeds
• Signs of decreased red blood cells - unusually weak or tired, fainting spells, lightheadedness
• Breathing problems
• Chest pain
• Constipation
• Cough
• Mouth sores (Nooooooooooooo, not "Can-sores"!!!!!)
• Nausea and vomiting
• Pain, swelling, redness or irritation at the injection site
• Pain, tingling, numbness in the hands or feet
• Stomach pain
• Trouble passing urine or change in the amount of urine
• Diarrhea (cha cha cha)
• Hair loss
• Jaw pain
• Loss of appetite

Hmmm, good times!!

Yes, I experienced a few of these side effects, but the one we were most concerned about was a fever I received the day after my infusion.  Dr. H was out of the office this day, but thankfully the Nurse Prac was able to squeeze me into her busy, booked day.  The main concern was an infection.  Thankfully the fever passed and the lab work showed no signs of an infection.  (Insert sigh of relief).  So ya, last week wasn't much fun, but I'm feeling better and excited about getting this ball rolling.  It's hard not to think that we wasted 2 months on this clinical trial, but I'm glad we gave it a shot.  It might not have been the "miracle drug" for me, but hopefully it will be for someone else.  

Wednes"BAY" Week 3... On a "Toxic Tuesday"

I just wrapped up my 3rd week on Bay 80-6946.  Because of the holidays my infusion was moved up to Tuesday (I know, just like old times), in order to have routine lab work the day after the infusion.  I'm not required to have lab work the day after every infusion, but it is required on the 3rd week of this clinical trial.  The 3rd week also requires another 12 hour long day on infusion day.  The infusion itself is only about an hour to an hour and a half, however I'm suppose to hang around  the rest of the day while being monitored... vital signs are periodically checked and Pharmacokinetic Samples, or PKs are taken.  Talk about a long da... Oh, did I lose ya with the big word???  If so, no worries!  Let me explain...

Pharmacokinetic Samples or PKs are blood and/or urine samples that are collected before, during and after my treatments. These samples can tell us how high the level of the drug gets in my body, how long the drug stays in my body and how my body gets rid of the drug.

Now you're up to speed with whats going on AND you learned a little something.  But before I sign off and wish everyone a Happy Thanksgiving, I have a few shout outs to make in the spirit of Thanksgiving...

Thanks to the American Cancer Society for hooking us up with free lodging for the night.  Ooooh, how that helps us out!

Thanks to the gentleman blaring Christmas music for 12 hours straight in the infusion room.  I think I can make it till Christmas 2012 without hearing another Christmas song (insert sarcasm)!

And thanks to the great Chemo nurses in the infusion room. One in particular nurse stands out... But maybe that's because she helped me get through the last couple of hours of Christmas music. She was the night nurse who wore cowboy boots, called me mija and kept a stack of prayer cards in her pocket.  Thanks Maria!

Happy Turkey Day Y'all!

Wednes"BAY"

It would have been exciting if the results from my PET scan came back showing improvement, but instead they came back showing something equally exciting… “STABLE.”  It’s a word I never thought I’d appreciate as much as I do now.  I’ve had a lot of curve balls thrown at me this year after being diagnosed so I actually welcome the thought of being "stable."  Stable is not a bad thing.  I've learned it could be worse.  Ultimately in the long run, we're going to kick some cancer ass, but for now, I'll take "stable!"  But since I mentioned curve balls being thrown at me, let’s take a few moments to review some of them…

Not only do I have breast cancer, BUT it’s spread to my liver (Doh!)

It’s rare to have an infected port, BUT mine got infected (Doh!)

Bone metastasis?!?  (Doh!)

Liver biopsy drama... (Doh!)

So yes, “STABLE” is not a bad thing!  Besides, did we really expect improvement after 2 days from the 1^st infusion?!?  After talking to Dr. Patnaik she said the “possibility” was there, but she’s really expecting improvement over time.  So this week I finished up my 2^nd dose.  Again, I’ll have an infusion every week for 3 weeks, then I’m off a week.  That’s considered 1 cycle.  After the 2^nd cycle, which will be the last week in December, I’ll retake a lot of the scans and images to see where we are at.  Hopefully by then we’ll start to see some improvement!

As for my blood sugar levels, I mentioned that one of the main side effects of this drug is high blood sugar, or hyperglycemia.  Sure enough, after my 2^nd infusion, my blood sugar levels increased.  Thankfully this time they didn’t increase quite as much as last week… we’re thinking my no sugar, low carb diet on infusion day this week might have helped.  So anyway, with the Drs suggestion, we bought a glucometer to help monitor my blood sugar levels on infusion days and the day after.  Other than that, I'm doing great!  

Casey's Cancer Kickin' Krewe 2011

I can’t even begin to describe what an amazing weekend I just had.  Have you ever participated in a Komen race???  If not, YOU SHOULD!!  Over 17,000 people poured through the streets of Austin.  It’s a memory that I’ll cherish forever!  I’m truly blessed to have family and friends who are… well, who are not just supportive, but A-W-E-S-O-M-E!!  Since being diagnosed, family and friends have struggled with not knowing how to show their support.  This race was a great opportunity for everyone to come together, show their support and have some fun.  And boy did we have some fun!!  And if you’ve never worn a pink wig in your life… YOU SHOULD!!  I’m already looking forward to the next time I get to wear it!  Hey, I live in Austin!  It’s a guarantee that I wouldn’t be the “weirdest” person in the crowd!  Ha ha!  Anyway, thanks to everyone who came out on race day… even if I didn’t get a chance to see you.  With over 17,000 people, you could say it was a bit crowded downtown!  ;)

So yes, it would be an understatement to say that “Casey’s Cancer Kickin’ Krewe” was a success!  We reached our goal and then some.  Thank you to everyone who participated and/or donated.  We raised $14,340.  If that’s not incredible enough, on 11/10/11, our anonymous donor matched the total amount raised in Memory of Natalie Hogan.  I know… breathtaking and inspiring!  My heart is smiling right now!  After a few more donations that trickled in, our grand total is up to $28,830.  UNBELIEVABLE!!  I have to thank our team captain for such an amazing job... Thanks Elizabeth!  I love ya girl!

Alright, my next infusion is this Wednes”BAY!”  Come on… I couldn’t stop at “Toxic Tuesdays” and “Manic Mondays!”  So along w/ my infusion I’ll meet w/ Dr. Patnaik to discuss the results of my PET scan last week.  I’m SO excited, yet SO anxious!  I don’t want to get my hopes up, but the “possibility” that we could see results after the first infusion is an incredible thought! 

Woohoo!

The Krewe's Team Captain

SURVIVORS

Winner of "Farthest Traveled" & "Surprise Visit"

Great seeing you Brian!!

Thanks Contigo!  Fun after party!!

Casey's Cancer Kickin' Krewe - Race Day Information

The Race is this Sunday...


*Krewe Photo: 
Meet at 15th and Congress on the Capitol side at 7 a.m... don't be late!  I know, I know it's early, but it should be easier to fight traffic and park and I really, really want a team picture!  The timed race starts at 7:30.  For the rest of us, we'll mosey to the starting line for opening ceremonies at 7:45.  Feel free to walk or run in the race of your choice.  I will be participating in the 1 mile family walk...and yes, I'll be walking!  You didn't think I was running did you?!?  If you're a true follower of this blog, you would know that one of my many nicknames is Grover... and I won't be walking FAR!!


*Race Attire: 
Wear your Krewe shirt to let everyone know you're part of our awesome team!  Then add some flair to show off how fun we are!!!  We'll have beads for you to wear and throw (no inappropriateness tho!).  So add a fun hat, wear a tutu, pick up some fun sunglasses, use your imagination and go WILD!


*After Race Party: 
Join everyone to celebrate a successful race at Contigo (10:30 - 2:30),
2027 Anchor Lane, Austin, 78723
http://contigotexas.com/location
It's a great place with tasty food and cold drinks. 


Be sure to check out Komen Austin for more details... race map, parking, road closures, etc.


FUN!!  Looking forward to Sunday!!  ;)

TDM1... I mean BAY 80-6946 Day 1

We started out the day by leaving Austin at 5:45 am.  We arrived at the START clinic this morning at 7:45 am... it's 9:00 pm and we're still here.  The infusion lasted about an hour, but I'm being kept here till 10:30/11 pm to be closely monitored.  One of the side effects I was warned about when joining this clinical trial was high blood sugar levels.  Sure enough, my blood sugar levels increased so I've been given a couple of insulin shots.   Since then the levels have begun decreasing so we're hoping to get out of here in the next hour or two.  It's been a loooooong day!  Tomorrow I'll have more lab work and a bone scan.  On Friday I'll have even more lab work and a PET scan.

I'm feeling great and looking forward to the possibility that we'll see results in Friday's PET scan.   We probably won't get the results till next week, but I'll be sure to keep you posted.  As for the master plan, I'll be getting weekly infusions in San Antonio for 3 weeks and then I'll take the 4th week off (no infusion, but I'll of course have lab work done).   That's considered 1 cycle and I guess we'll just repeat the cycle as necessary.

Again, it's been a loooooong day so I'm signing off.  Hope everyone is having a great week so far!  And yes, I hope that means you're resting up before for the big race this Sunday!!

Saaaaaaay Whaaaaaaaaat?!?

I just wrapped up all the initial lab work, scans, images, tests and paperwork for the clinical trial down in San Antonio.  Jason is recovering from bronchitis so my mother in law, Marion, swooped in and saved the day.  I can't thank her enough for going with me and sitting through the lineup of... well, just about every medical test known to man.  That and we had a hell of a great time!  

At this time I would like to clarify one small, itsy bitsy detail... as I was about to sign the consent form, my attorney and I reviewed the consent one last time (yes, having a mother in law who is an attorney is quite convenient... of course being able to say "my attorney" just makes me sound so much more important).  The consent reads: "An open label Phase 1 dose (hmmmm, I thought HDM1 was in phase 2) escalation study to evaluate the safety, tolerability, pharmacokinetics, maximum tolerated dose and biomarker response after intravenous administration of weekly "BAY 80-6946" (Saaaaaaay Whaaaaaaaat?!?) to patients with advanced cancer."  Whoa, whoa, whoa... BAY What?!?  What happened to the Trojan Horse, miracle drug TDM1???  Well, APPARENTLY TDM1 had been mentioned in a Drs appt and we took the name and ran with it.  That is in fact NOT the trial I will partake in.  So this whole time I've been excited about the wrong drug... GREAT!!  But the good news is this "BAY 80-6946" (okay, they really need a new name for this bad boy) does all the great things that I was excited about... targets the cells, has minimal side effects and lets not forget the most exciting thing, the frequent scans and images that comes along w/ the trial.  So after discussing this new drug with my attorney, I signed the consent forms.  Oh ya, we're doing this!  So next week I'll have my first infusion on Wednesday, the 9th.  My next PET scan will be 2 days later on Friday.  There is a strong possibility that after only 2 days we'll see improvement.  How crazy is that?!?  I'm so excited about this trial and can't wait to see what happens.  So yes, I'm excited about this "miracle drug"... it's just another miracle drug I'm excited about!

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.

SO Frustrated

Well, last week my tumor marker went down 7 points.  We were hoping for a downward trend over the next couple of weeks, but unfortunately it went up 30 points this week.  We're back in the 300's.  Well, isn't that just the pickle on the crap sandwich that is my day?!  Seriously?!?  What in the hell is this tumor marker doing?!?  I guess at this point there's no sense in fretting about it... I'm feeling good and my side isn't hurting so that's a good sign.  We're going to check the tumor marker again the week after next so maybe it will start going back down... we were wanting to give this new cocktail a 6 - 8 week time frame to start doing it's thing.  So as frustrating as this is, I can't get wrapped up in the tumor marker fluctuating the way it is.  So alas, we wait.  Hmmmmm, deja vu!!!

In the meantime I'm going to enjoy this next week... an amazing opportunity in the OBX w/ my hubby!  That would be the Outer Banks in N. Carolina.  Thanks for the lingo Steph and thanks to Little Pink Houses of Hope (LPHOH)!  I'm starting to love their motto...

Live Stronger.  Laugh Harder.  Love Deeper.

Live Stronger. Laugh Harder. Love Deeper.

Can you believe it has been almost a year since I was diagnosed?!  Well, I can't believe I was diagnosed PERIOD, but I surely can't believe it's almost been a year.  I remember the last day of September 2010 getting that unbearable pain in my side, Jason dragging me to the ER and then scheduling that first appointment w/ Tx Oncology.  Wow!  A lot has happened since then!  

 

Well, as y'all know, I tried my luck with applying for a weekend retreat called Casting for Recovery.  Unfortunately I wasn't accepted, BUT since it's such an amazing program and opportunity, I'm looking forward to applying next Spring.  In the meantime, I heard about another incredibly amazing nonprofit called Little Pink Houses of Hope (LPHOH) which offers week long summer retreats in the Carolinas.  No harm in applying right?!  Well, as Tommy Boy would say... "Holy Shnike!"  I WAS ACCEPTED!!  

At the end of the month Jason and I will be spending a week long, all expense paid vacation in Nags Head, NC.  I was a little hesitant to post this amazing news earlier... we weren't quite sure if the retreat would be postponed or cancelled due to Irene.  From what I understand, the retreat is on and we are ready to go!!  I'm excited!  I'm giddy!  And to be quite honest I'm in awe of the volunteers and the power of donations that make these retreats possible!  

Yes, this is an incredible opportunity for Jason and I and I think it's crazy that the timing of the retreat is exactly one year from the day my liver was screaming at me "hey, there's something wrong."  As much as I'm looking forward to this trip, you have no idea how I wish it was on different terms!  But I have no doubt in my mind that I will...

 

Live Stronger. Laugh Harder. Love Deeper.

Another Tumor Marker Update

My tumor marker is down 7 points, from 278 to 271.  I have an appt w/ Dr. H on Tuesday so I'm anxious to see what she has to say.  We'll also be checking the marker again next week so I can only hope that it continues to go down.  Until then I hope everyone has a fabulous weekend!!  TGIF!!!

Challenge Accepted IV

Woohoo!!!  More CfR pics!  Y'all are awesome!!

Annah
Estes Park, CO
Summer 2011
"Escaping the TX heat... Fly fishing in CO"

Jason & I with Riley & "Shuff-u-lin' Sam"
Wanna Wanna Bar
"Labor Day 2K!  LET'S DO THIS!"

Ruth... & Mary Poppins
9/9/11
"Excited to be at work on a Casual Friday"

Brian
9/9/11
"Couldn't wait to get out in a stream to model... in the mean time it's Casual Friday"

Tumor Marker Update

Okay, I'm getting a little behind on my blog updates... to catch you up to speed, last week there seemed to be an upward trend w/ my tumor marker.  NOT quite the news I had wanted to hear.  On Aug 1st it was 160, on Aug 17 it jumped up to 245 and on Aug 29 it made another jump up to 315.  (To refresh you memory on what the tumor marker is, refer to my 6/11/11 blog entry).  Dr H is still thinking this is a part of the "flare up" from the new drugs I'm taking.  Which might be the case... this week the tumor marker went down to 278.  Not where we were, but it's going down... I'LL TAKE IT!!!  Dr. H was wanting to give this new drug combo about 6 - 8 weeks to "do it's thing," so hopefully in the next week or two it will start doing it's thing!!  We'll be checking the tumor marker again next week so my fingers are crossed that it continues to go down.  I'm obviously hoping this new drug combo works, but if the tumor marker for whatever reason doesn't continue to go down OR for whatever reason starts going back up, then we of course have a backup plan in mind.  So alas, we wait!!

JOIN MY TEAM - Casey's Cancer Kickin' Krewe

I recently accepted the challenge to raise funds to support the Austin Affiliate of Susan G. Komen for the Cure in its efforts to END BREAST CANCER FOREVER.

I invite you to join me in this important mission by becoming a member of my team, Casey's Cancer Kickin' Krewe! Together we can raise awareness and funds to save lives and find a cure. So yes, I'm asking for your help in several ways: 1) join my team for this great event, 2) help me reach my fundraising goal, 3) DO BOTH!!

Join me:

Becoming a team member is easy! All you need to do is click the Join a Team button on the Race Registration page to register for the Komen Austin Race for the Cure® and "Join a Team". Select "Casey's Cancer Kickin' Krewe." It's going to be a fun day... we have plans for a fun Mardi Gras theme with crazy hats, big sunglasses, beads, lots of beads, fun team shirt and big after race get together (details on team shirt and get together coming soon)! ;) Oh, and the more the merrier! Invite your friends and family to join us for a fun day and great cause!!

Support me:

You can help me reach my fundraising goal by making a tax-deductible donation. Any little bit helps... $10! $25! $50! $100! But please don't stop there if you can afford it! ;) Together we can make a difference! Komen Race for the Cure accepts cash and checks, but to make a safe online donation with your credit card, go to my fundraising page and click the "DONATE" button above the thermometer. Your support will help us get another step closer to a world without breast cancer.

Thank you for your support!

XOXO,

Casey

Click here to visit my personal page.

http://austin.info-komen.org/site/TR?px=10422721&pg=personal&fr_id=2282&et=9azn3vgcH3_ZaODoNXVcWA..&s_tafId=82339

Click here to view the team page for Casey's Cancer Kickin' Krewe

http://austin.info-komen.org/site/TR?team_id=175688&pg=team&fr_id=2282&et=AD0Umzw9aGhfiD67PE7LAQ..&s_tafId=82339

Target Now Update

After a few comments from friends this week I realized I never updated my blog from last week's Drs appt.  Oops!  Basically, the "Target Now" from my liver biopsy results are in!  This is a new test that can target a specific area and tell you what drugs would best treat that area.  Pretty amazing if you ask me!!  Anyway, they were not able to complete a few of the tests, BUT Dr. H is pleased w/ the analysis they were able to do... meaning I won't have to have another liver biopsy at this time.  WHEW!!!  The results of the analysis they were able to complete are pretty much in line w/ the recent drug changes Dr. H made... laying off a few of my IV drugs (Herceptin & Ixempra), while increasing the rest of my oral drugs and adding the anti estrogen drugs.  The plan is to stick w/ this for a 6-8 week period and then reevaluate the situation (using lab work, tumor marker, etc)...

Now speaking of the tumor marker, last week my lab results indicated that the tumor marker increased from 160 to 245.  Ya, not quite the direction we were aiming for!  I'm not going to lie, my heart sunk into my stomach after hearing this news.  BUT Dr. H seems to think this is a "flare up" due to the recent changes in my medications.  Which makes sense... the tumor marker has had it's "flare ups" in the past when I've changed my meds so it makes sense we'd have another one.  So next week I'll have another Drs appt, another tumor marker test (which will hopefully drop back down) and I'll be getting only one IV infusion (the Zomeda for my bones).  Fingers crossed that this is winning combo!! 

 

Tha tha tha tha that's all folks!

Meno-Who, Meno-What, Meno-PAUSE?!?

So I received a call from my Drs office on Friday... don't get too excited... we're still waiting on the Target Now results.  But until then, Dr. H is wanting to add 2 more drugs to my cocktail.  As if my cocktail wasn't already full!!  As a reminder, we're still holding off on a few of my IV drugs until we receive the Target Now results and in the meantime we've increased the oral meds I'm taking.  So the 2 new drugs we're adding is Lupron which is an injection/shot that I would get every 3 months and Femara, another pill to take daily. 

A little background on my diagnosis to refresh our memories...

I am HER2+ which is a form of breast cancer caused by the overexpression of a gene called HER2 in tumor cells.  I am also ER+ (estrogen receptor) which means that the cancer grows in response to estrogen. 

So if my cancer is growing in response to estrogen... why not shut down the estrogen.  So the 2 new drugs are anti-estrogen drugs which basically means that my ovaries have put the "temporarily going out of business" sign in their windows.  Which also means... hello menopause!  I just can't tell you how excited I am to experience the side effects of menopause at the age of 33 AND in triple digit heat!!  What fun this is going to be!  YAY!!

Speaking of side effects... I'll go ahead and complain about one of the odd side effects I'm experiencing.  I know I have an upbeat, positive attitude about kicking this cancer's ass, but I've gotta do a little complaining now and then!  Plus, some of these side effects are odd... who knew?!?  I sure as hell didn't so why not share it w/ anyone who will listen.  And if you have lasted this long reading my blog, I thought you'd be interested!  Anyway, there's a little side effect known as Hand Foot Syndrome in which you can experience redness and peeling of.... you guessed it... your hands and feet!!  My feet feel sooooooo raw!  I'm afraid if they peel anymore I'm going to need to start wearing a smaller shoe.  Or next time you see me I may be a couple of inches shorter!  Anyway, nothing I can't handle... if anything, it's just annoying!  I used to be quite the speed walker and it's killing me that I'm walking so slow!  It's hard to "walk w/ a purpose" at a snail's pace!

So there you have it.  I apologize in advance if I decide to make a blog entry under the influence of any menopausal side effects... it could get ugly!!  Just sayin'!!  ;)

Challenge Accepted III

YAY!!!  I love it... I've received some more pictures!  Y'all made my day!  Thanks for accepting my CfR Challenge!!  ;) 

Marnie & Riley (also known as Marn"i" and Ril"i")

Vail, CO

Ooooommmmmaaaaaaaaaaarrrrrrrrrrrrrrrr!!!

Davis Cup

Austin, TX

Spencer & Erica

Frying Pan Lakes, CO

Team CfR

Creede, CO

J & I 4 Wheelin'
South Fork, CO

Biopsy Results... ALMOST all in

Well, J and I got back from an amazingly restful and fun vacation in Colorado on Saturday.  We had Sunday to "recover" from our vaca and today I was back in the infusion room.  Talk about jumping back into reality!  ;)

So down to business... Even though we are still waiting on one final aspect of the biopsy results... what we do know is GREAT NEWS!  We know that the lesions on my liver that were not responding to my treatment are NOT cancerous!!  Whew!!  Yes, talk about a HUGE relief!!  We also know that the lesions on my liver that are responding to the treatment are still HER 2 Positive (for those of you who follow the specifics and details of my diagnosis).  Now the "aspect" of the biopsy results that we are still waiting on, called "Target Now," will end up taking another week or 2 to officially come in.  It's a test that is relatively new (being used w/in the last year) and actually targets the areas to specifically determine what treatment is most effective.  So when these results come in, Dr. H will have an even better idea on whether or not to increase or decrease my oral drugs and/or IV drugs.  My next appointment w/ Dr. H is scheduled for August 17th.  So until then I'll try to post some pics from my vaca in CO.  I also have some new CfR pictures that I've recently received (Woohoo, thanks for taking the CfR Challenge) AND since my birthday is coming up, hopefully I'll have some fun bday pics to post as well!  ;)

Thanks again for your support!  I couldn't kick this cancer's ass w/out you!!!

Another Nickname to List...

Over the years I have acquired quite the number of nicknames.  There's too many to go over ALL of them, but lets see, I'll name a few of the more recent nicknames that have been given to me.  First off, we have Grover.  I'm sure you all remember the lovable blue Muppet from Sesame Street???  Well, the best way I can describe how I run... google Grover's Near/Far episode... oh yeah, that's how I feel and look when I run!  It's not pretty!  Hmmmm, maybe that's why I played golf in high school?!?  Well, that AND it was the only thing I could kick my sister's ass in.  Gotta love sibling rivalry!  Okay, then there's the General.  In preparation for riding around one of "The Coolest" ranches in Texas, The Flying W, I "borrowed" (nice way of saying I stole thanks to my friend and accomplice Brandi) an "army like" camo hat from my friend Elizabeth.  Thanks for the hat EA!!  ;)  And then we have Magda... for my love of tanning and being in the sun.  If you've seen the movie There's Something About Mary, you'll know who I'm talking about!

So where am I going with all this???  Well, I've added a new nickname to the list that I wanted to share... I now introduce to you... Fatigued Frannie!!!  Yes folks, that's me!  As I'm vacationing in CO I've had to pick and choose what I'm able to do.  I've passed up fly fishing and golf among other fun activities, and as much as I would have liked to have participated in the fun... don't feel sorry for me!  I'm lovin' the fact that I'm sitting on an amazing porch, with an amazing view, in 60 degree weather... relaxing and reading my book.  A little R&R... I'm in heaven!  After last weeks liver biopsy adventure... I NEEDED this!! 

Fatigued Frannie signing off... oh, and no further results on the biopsy as of yet.  I'll be sure to keep you posted!

HOPE

I received a voicemail today from Dr. H that gives me hope.  Even though all of the results aren't in (don't want to pop the bottle of bubbly just yet)...  but a preliminary review has indicated that there is a chance that the non-responding areas on my liver are NOT cancer.  The results should be in by next week, but at least we have some potential good news to hold on to as we start our vacation.  Adios Mofos... we're heading to Colorado!!

"Hope is a good thing.  Maybe the best of things.  And no good thing ever dies!"
-Andy Dufrain

My Liver Biopsy Journey

First of all, I wish I had results to report, but I don't.  I'm hoping to get them in by late tomorrow.  Until then I thought I'd share w/ you my liver biopsy journey at Seton Hospital on 7/18/11....

As I arrived at Seton Hospital, should I have been alarmed or concerned that Seton had NO record of me being a patient at their hospital???  Even after...

1.) Two trips to the ER

2.)  Being admitted as a patient in their hospital for 4 days for my infected port AND

3.)  The surgery that took place in their hospital to remove my infected port....

All w/in the last year.  Now, I know I didn't just dream up and imagine that all of these events occurred!  I mean they sure as hell found my file when they billed me for these events and I have a pretty impressive scar to show for at least one of these events.  But ya, for whatever reason, as of 7/18/11, there was NO record of me on file.  And this is how I started my day at Seton.  Things can only get better from here right??? 

After "re-establishing" myself as a patient, I started out in the "B Pod" where I changed clothes.  Their new summer collection was available which consisted of a drab smock (ties in the back of course), socks w/ non-stick soles, a breathable head cap, and some fashionable bracelets that reminded me of my "Under 18" and "Under 21" days.  Let me just tell you, I was rockin' the look!!  After changing, they had to draw my labs, insert an IV and go over any last minute, procedural paper work.  Thankfully Jason was able stay with me during this time. I spent about an hour and a half in the B Pod, however of that time it ended up taking 40 minutes and 3 nurses (they called in the Dream Team in for this task) to try to locate a vein big enough to draw blood for the lab work.  I know, I know, you're probably wondering why they couldn't just draw blood from my port.  That's what it's for, right?!?  Well, b/c my port is flushed w/ Heparin which is used to clean and prevent the port from clogging, the Heparin can skew the results/numbers of certain tests.  So this brings us back to my tiny little veins... thankfully Tom Rn came to the rescue and was able to draw my blood w/out perforating the vein.  When Tom Rn finished w/ successfully drawing my blood, the other nurses cheered him on and carried him on their shoulders off into the sunset.  Okay, made that last part up, but wanted to make sure you were still paying attention.

After hanging out in the B Pod, there was one last stop before surgery and thankfully Jason was able to accompany me before getting kicked out into the waiting room. I was wheeled into a Holding room which turned out to be an open room w/ 6 additional patients and I'd say a total of 15 Seton staffers... Nurses and those pretending to be nurses. First of all, as I entered the room I couldn't help but notice that all 6 spots available for patients was full. Did they take me to another holding room... Nooooooooo, of course not! I was left in the center of the room FACING all the other patients.  Patients that included a girl about my age who was crying, a woman who sounded like she was breathing through a snorkel full of water, another woman who kept asking about safety procedures and let's not forget the elderly man who appeared to be having muscle spasms that kept trying to disrobe because he was hot.  One might think this was a slight bit awkward... Nooooooooo, it wasn't a slight bit awkward! It was downright uncomfortable!  

My first reaction was WTF?!?  No, I'm sorry, I need a bigger font to emphasize this... WTF?!?   I was so overwhelmed I later found out from Jason that I had a goofy grin on my face trying to deal with the situation I was in. I remember nurses asking me questions and I just lied there in my rolling hospital bed with that goofy ass grin on my face nodding. I could have promised my first born child to someone and not have even known it.  And then my "knight in shining armor" walked in!!  Now let me interrupt my story here to explain what I mean... Jason is obviously my knight in shining armor and will always be, BUT considering that Jason could not accompany me into surgery, Jason was temporarily replaced by Jeffrey Rn. Sorry Jason, but I'm sure you understand after witnessing that holding room!!  You know what I'm talking about!!  So back to Jeffrey Rn... he is what I would stereotype as a "tough biker" with his hair in a long ponytail (rubber banded in several places) and of course a beard/mustache that would make Grizzly Adams proud.  His tough exterior came w/ a West Texas accent even though I found out later he was born in N. Carolina.  Jeffrey Rn saw that uncomfortable, anxious goofy grin on my face and asked if it would be alright if we waited in a more calming setting.  Hell yes Jeffrey Rn!!  Did we just become best friends?!?  At that moment I was picturing who would get the "be fri" and "st ends" part of the necklace.  And yes, I would like to also take this time to note that this new found BFF status was established before I even found out that Jeffrey Rn was in control of the drugs.

As Jeffrey Rn rolled me into the quiet surgery room which contained the CT Scanner, we chatted about all sorts of things... where we were from, what we did (he was in oil field work and he called himself a "rough neck" before becoming a nurse) and of course pets (I even had the chance to see a picture of his pit bull named Josey Wales).  Thank you Jeffrey Rn for taking my mind off the procedure and helping me forget the holding room I just came from!!

The procedure took about 30 minutes.  Two insertions were made with a needle below my right breast. The CT Scan was used as a "GPS Devise"... The needle went between 2 ribs and past a lung where they reached my liver. A totol of 10 samples were to be retrieved (5 from the area responding to the treatment and 5 from the area that was not responding).  There is at least one specific time when I remember waking up during the procedure.  NOT something I had intended to do.  The Surgeon was trying to get one of her last samples.... the pain, oh the excruciating pain.  I remember laying on my back trying to be as still as possible... tears streaming down my face.  Jeffrey Rn was by my side the whole time... I not only remember him offering me more drugs (HALLELUJAH!),  but he held my hand and wiped away my tears.

About 2:00 the procedure was finally done and I was wheeled into my recovery room where I was to be watched for 3 hours to make sure there wasn't any unexpected bleeding.  Thankfully Jason and Marion (the BEST mother-in-law on earth I might add) waited with me.  Unfortunately, my pain continued to get worse.  There was a sharp pain in my right side which continued to get worse every time a breathed in.  It was then when my nurse who was to look after me after my surgery entered my room (insert Jaws theme song) and we met who I will refer to as "The Nurse From Hell."  I'm not quite sure what set this nurse off (maybe she was having a bad day, maybe she looked in the mirror and didn't like the horns and tail she saw, I'm not quite sure).  But after expressing how uncomfortable I was, her "I don't care, I can't do anything about it attitude" did not sit well with the party in my room.  I started to cry uncontrollably and of course the crying wasn't helping the pain in my side.  I was miserable!  That's when Jason and Marion swooped in and saved the day.  The Nurse From Hell was banned from my room and from then on I had the most pleasant, caring nurses Seton Hospital could offer.  Go Figure!

We ended up leaving the hospital around 6:30 and boy, was I ready to get out of there!  I've been recovering ever since... extremely tired and still feeling discomfort in my side.  I have a feeling I'll be sore another day or two.  Hopefully fully recovered before our Colorado trip at the end of the week!  

That concludes my liver biopsy journey.  Time to sit back and anxiously await the results....

The Dealio (Results from the PET Scan)

The PET Scan results have indicated that the areas on my bones have improved and/or disappeared (Sa-weeeeet!).  Now, as for my liver... there are areas on my liver that are responding great to the treatment (Woohooo!), but there are also areas on my liver that aren't responding at all (Boooooo!).  Now to me, that's not necessarily bad news... I mean thank goodness these areas aren't getting bigger!!  BUT I'm also not pumping my body full of toxins to remain "stable" if you know what I mean!  I'm in it to kick some serious ass and get rid of this crap!!  So thankfully my Dr and I are on the same page and we're wanting to figure out why there are certain areas responding and some that are not.  So where do we go from here, you ask?!?  Well, on Monday I will have a liver biopsy... taking samples of both areas to determine why they're responding differently.  I'll have a follow up appt on Tuesday w/ Dr. H to discuss the results.  

Also, as far as the tumor marker is concerned...  It has increased from 142.4 to 150.3.  Not quite the direction I was hoping for, but the nurse I talked to said that Dr. H is NOT terribly concerned... especially since I'll be getting the biopsy on Monday to figure out what's going on.  Plus, from what I remember... the time before last it was in the mid 150's so we haven't fallen too far off track.

So again, this is us taking a half step backwards, but I'm also looking at it as gaining momentum to start taking that flying leap forward... "to infinity and beyond!"  I swear, I don't end EVERY blog entry w/ a movie quote!  ;)

Challenge Accepted II

I have received a great response from people participating in my CfR Challenge (Refer to my 4/26/11 "Challenge Extended" blog entry).  I've really enjoyed getting the pictures I've received and I'm looking forward to getting the ones from the rest of you slackers.  ;)

Thanks guys!!  I hope you're enjoying your PFG!!

My "Long Lost Cousin in Law" Steph Jeffries (right) and her best friend and cancer survivor, Ann Camden (left)
Race for the Cure, North Carolina
June 2011

Round 2 from Mr. Pickles’ Stylist

Eleven Mile Canyon, Lake George, CO. 
"Just troutin’ around… fishin’ on a Friday! O yea."
June 17, 2011

Mom & Friends

South Fork, CO

July 2011

Jason & I
South Padre Island, TX
May 2011