Could It Be

I can't believe it!  Not only did my CT scan results come back in record breaking time, but I have some AMAZING news to share... of the 3 lesions on my liver, the larger lesion is now half the size it was and the 2 smaller lesions are 30-40% smaller then what they were.  Could it be... could we have found a cocktail that works?! 

 

Take that, Cancer!!!!

Better

I knoooooooooooow!  It's been awhile! 

So let me catch you up to speed!  Over the last 5 weeks I've been on a Carboplatin/Gemzar/Herceptin cocktail (for those of you who talk "cancer" and "cancer treatments").  I get infusions once a week for 2 weeks and then I'm off a week.  I was pulled from the clinical trial I was on and started this new treatment for a couple of reasons...

1.  My tumor marker was increasing

2.  I started having that pain in my right side (what I sometimes refer to as the liver quiver) and

3.  The CT scan ultimately showed that the lesions on my liver were increasing in size (which explains 1 & 2)

Since I have started this newer cocktail, my tumor markers have steadily decreased AND I no longer have the pain in my right side.  These are both AWESOME signs that this cocktail is working!  Or at least it's doing a hell of a lot better than the last couple of cocktails I've tried!  Now, you all know about my "love/hate relationship" w/ my tumor markers (I mean "60% of the time, it works every time"), but for the last couple of months they have surprisingly been spot on compared to my physical well being.  I'm scheduled for a CT scan next week so I won't know for sure what's going on until then.

Unfortunately, I've experienced some pretty rough side effects with this newer cocktail so I wasn't able to fully enjoy my Thanksgiving week w/ family in town.  This newer cocktail originally included Tykerb (an oral drug that I've previously taken), but for some reason the side effects this time around were unbearable.  Thankfully we've worked out the kinks and Dr. H pulled the Tykerb from the cocktail and I'm FINALLY feeling better.  I can't say I'm feeling great, but better is good!

So here's to a better tomorrow... and a better CT next week.  I'll keep you posted w/ the results...

Deja Vu

Wednesday night I woke up at 2:30 in the morning with a pain in my right side (yep, that would be my liver).  Before I knew it I was laying there with tears streaming down my face... not because the pain was that bad, but it was the helplessness that I was feeling.  The sense of defeat.  I knew this was a sign that my chemo cocktail was not doing what it was supposed to be doing and every time I have to change drugs I experience this sense of feeling defeated.  

I was able to get in for a CT scan on Thursday and the results are in... sure enough, the 3 existing lesions on my liver have gotten bigger.  Thankfully there aren't any new lesions and thankfully my lab work couldn't be better, but this does mean that we'll need to change up my chemo cocktail... Again!  

I'll meet with Dr. H on Monday to discuss what my options are.  Hmmm, talk about deja vu!

National Metastatic Breast Cancer Awareness Day

Because this is breast cancer awareness month, I've been putting a lot of thought into "what exactly does that mean."  Yes, it has been confirmed... we are in fact aware that breast cancer exists.  But what else?  What can we learn from this?  When I was diagnosed I had no idea what metastatic breast cancer was.  The last 2 years have been quite a learning experience for me so I thought I'd use this opportunity to share a few things I've learned along the way.  And what do you know, October 13th just so happens to be National Metastatic Breast Cancer Awareness Day.

 

So lets get our learn on...

 

The Metastatic Breast Cancer Network (MBCN) is a national, independent, non-profit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer.  If you get a chance, please check out their website.  There are some interesting and eye opening articles and stories of those living with metastatic breast cancer.  Of course I know we all have crazy, busy schedules, so from their website I pulled the 13 facts everyone should know about metastatic breast cancer...

 

13 Facts Everyone Should Know about Metastatic Breast Cancer

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

 2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

 3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

 4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

 5. About 6% to 10% of people are Stage IV from their initial diagnosis.

 6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

 7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

 8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

 9. Like early stage breast cancer, there are different types of metastatic breast cancer.

 10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

 11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

 12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

 13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit http://mbcn.org/

2012 Komen Update

I just wanted to clarify what's going on with the Komen race this year...

1. I was hoping to redirect some of my fundraising efforts to the Mamma Jamma ride. Quite a few of my fellow Pink Ribbon Cowgirls are riding and since I'm unable to ride, this was my way of supporting them at the same time supporting local charities who will benefit from the fundraising. I can't thank those of you enough who have contributed!

2. I was really, really hoping to participate and walk in this year's Komen race. Unfortunately, due to the pain I have been experiencing in my hip recently, I've decided that walking isn't a good idea. But I encourage everyone to join the team and walk your hearts out. I had a blast last year and it was an experience I'll never forget. Hopefully I'll be joining y'all next year!

(Knock on Wood)

Hey hey!  It's October and it has been a helluva better month than September so far (knock on wood).  And speaking of October...

We all know October is Breast Cancer Awareness month.  If you are unaware of this, I can only assume you are color blind... pink is EVERYWHERE!  So because it's breast cancer awareness month, Austin's KEYE TV's Mileka Lincoln is running a series of stories about breast cancer featuring education and the importance of information in the fight against breast cancer.  So last week I received an email from my Doctors office asking if I'd be interested in meeting w/ Mileka and I thought... sure, interviewing w/ a slight case of chemo brain... what could go wrong?!  

And so the interview begins...

Mileka Lincoln:  Could you please state your name and spell it for me

Me:  Casey Damen, that's C-A-S-E-Y D-A-M-E-N.  (Me thinking:  wait, did I spell that right?!  I hope my pronunciation was enough.  I mean so many people think my last name is spelled Damon or Damien.  And one time someone thought it was Demon.  Really, could you imagine my last name being Demon... Whoa, did she just ask me another question???  Ahhhhhh crap!)

From there on I was COMPLETELY thrown off my game!  I had so many things I wanted to say... apparently my spiel on quantum physics didn't make the cut.  Hmmm, well, maybe next time!

Click Here to check out the interview.  

And speaking of clinical trials, I had a long day in the infusion room yesterday w/ my first infusion of MM-111.  So far I'm feeling pretty good (knock on wood).  I'll keep you posted... there's more to come in October.

Open Arms

Have you ever had "one of those days?"  You know what I'm talking about... a day when nothing seems to be going right.  You feel like you're drowning or suffocating because one thing after another negatively effects you.  Whether it's physically or mentally or a combination of both.  Well, September was "one of those months!"  

So October, I welcome you with open arms!  

I'm trying real hard to process everything that's going on in my life while trying to stay positive and have a good attitude.  And let me tell you, just b/c I appear to have a "positive attitude" about all this... not a day goes by that I don't say Cuck Fancer!  Well, at least some version of that!  I feel myself pulling out of a funk and trying to get that fighting spirit back (I know, do you have the Eye of the Tiger playing in your head too?).  I'll be starting my new trial drug (MM-111) on Monday and hopefully this will be the other, other, other secret weapon!  Until then, here are a few things that have brought a smile to my face... 

1.  Spending time with my sister, her husband and my 2 amazing nieces...

Cheers!

2.  Realizing that so many generous people have donated to my Mamma Jamma Ride fundraising goal.  You know you want to check out my fundraising honor roll!  Are you on it?!?  CLICK HERE!

3.  A few pictures from my recent trip to British Columbia, Canada...

Shotgun!

 Vancouver

Look at me... I'm on a yaaaaaaaacht!

Take 2!

Tag team!

Please, oh please let my hair grow back like this!

Embracing the bald head!

What's your excuse?

After having an MRI on my hip last Friday, the results did not make a very convincing case for radiation.  YES… another cancer first has been postponed!  The bone mets do in fact appear stable.  This is great news!  There are however small ligament tears and strained tendons that might be causing the pain in my hip.  From what I understand, torn tendons can be caused by strenuous activity or even athletic injuries.  Since I haven’t been involved in any strenuous activities or athletic events lately, I think we can chalk this up to me being “fragile.”  You know, there's a reason I played golf in high school.  Anyway, since I’m tolerating the pain fairly well, I’m going to be taking it easy in hopes these “kinks” work themselves out.  If the pain persists and gets worse, then we’ll have several options to move forward from there, but at this time… I have a great excuse to sit on my ass! 

P.S.  I'll be starting the new cocktail/trial drug MM-111 on Monday, October 8th and I'll be back on a weekly infusion.  

Blah!

Well, I wish I had something funny to say or comment on, but I'm mentally zapped and figured I should at least update my blog with what's going on.  I had a CT scan last week and the 3 lesions that we're down to on my liver have all increased in size.  Nothing to be alarmed about, but at the same time Dr. H is thinking this cocktail may not be my secret weapon.  In another week or two I'll be starting a new cocktail which will be a trial drug.  It's called MM-111 (I know, I don't even have something witty or sarcastic to say about the name) and I'll be taking it with an oral drug I've taken before, Tykerb.  In the meantime, my hip has been bothering me so we're discussing possible radiation options to help with the pain.  The CT showed activity in the hip area, but no new activity since the last scan.  Whew!  Meaning my bone mets are stable.  Possible radiation... another cancer first for me.  I'll keep ya posted...

Texas Mamma Jamma Ride

Not that long ago I announced that Casey's Cancer Kickin' Krewe was the top fundraising team for last year's Austin Komen Race for the Cure.  I'll be walking again in this year's Race for the Cure, but I wanted to share the love and redirect some of my fundraising efforts to the Texas Mamma Jamma Ride.  I'm unable to participate in this year's ride, but I wanted to spread the word and encourage my closest internet friends to participate.  And if you're unable to ride or volunteer, I encourage you to consider making a donation.  

What:  Texas Mamma Jamma Ride

When:  October 27, 2012

Where:  Reunion Ranch

About:  The Texas Mamma Jamma Ride is a well-supported, one-day bike ride which raises money for local agencies that serve thousands of Central Texans with breast cancer 365 days a year. Participants have a choice of bike routes that run anywhere from 13 to 100 miles. It is a ride, NOT a race. It is an event for men, women, and families, and all levels of biking experience.

DONATE:  Please visit My Personal Fundraising Page

Be a part of the most successful breast cancer ride in the country and help us raise funds and 

awareness to fight breast cancer in Central Texas.

1 in 8 Women Will Be Diagnosed With Breast Cancer
If you know 8 women, chances are that one of them has been or will be affected by breast cancer.  There were 207,000 new cases of breast cancer reported by women in 2011, and nearly 40,000 women died from breast cancer last year.  The disease also affects men although it is much less common.  When anyone in the family suffers from breast cancer, the whole family feels the effects both emotionally and financially.

Your Participation Means More Survivors
You can make sure that early detection services, which are key to surviving breast cancer,  are available to all Central Texans regardless of their ability to pay. You can help provide funds for treatment so that people don’t have to choose between feeding their kids and getting well.  You can make sure that the newly diagnosed have the support, help, and guidance they need to survive.  You can make sure that everyone has the knowledge they need to reduce their risk to prevent recurrence of the disease. YOU can make a difference in the lives of thousands of people right here in Central Texas and help give them a fighting chance.

Getting Involved is Easy and Feels Good
There are many ways to help and no matter which one you choose you’ll feel good and have a great time knowing you are part of this community of caring.  

• Volunteer:  All you need is a willingness to help and the time to give.  We have hundreds of positions available both leading up to and on Ride day.
• Rider:  All you need is a bike and a willingness to take on a physical and fund-raising challenge. Free weekly training rides and skill sessions will prepare you for this amazing experience.  Each rider is asked to raise a minimum of $500. 
• Team Captain: All you need is a willingness to recruit friends, family and colleagues to sign up for the team as an actual or a virtual rider and help them get started fundraising to make a difference.
• Donor: Your gift insures that loved ones, friends and others have access to the support they need by helping agencies and organizations that change the odds for those with breast cancer every single day. 

You Can Do More Than You ThinkThink about how many people you know... friends, family, colleagues, faith community, fraternal organizations, sport groups, social clubs, people you do business with personally or professionally.  Now think about how many people have been affected or had a loved one affected by breast cancer. Nearly everyone knows someone.  When a loved one is diagnosed, friends and family want to help but often don’t know how or feel powerless to make a difference.  When you ask people you know to support you in the Mamma Jamma Ride, you are giving them an opportunity to take charge and fight back against a disease that impacts so many and to give back to our community in a fun supportive way.

What’s Raised Here Stays Here
This collaborative event supports 10 local nonprofit organizations providing a wide variety of supportive services to people in Central Texas.  This Ride is about challenging yourself, having fun and making a difference in our local community.

• Breast Cancer Resource Center
• Seton Family of Hospitals
• Komen for the Cure, Austin Affiliate
• Wonders and Worries
• The Care Communities
• Cancer Connection
• Wings
• Capital of Texas Team Survivor
• Community Action
• Sustainable Food Center

What do the Following Have in Common: Telly Savalas, an Eagle, Curley from the 3 Stooges & Me

After 1 year and 10 months, my hair finally called it quits.  When I started this newer cocktail ("the other secret weapon") I was told that one of the drugs, Taxotere, could very well be the drug that takes my hair.  After 2 weeks of my first infusion my hair definitely started thinning.  I thought, eh, no biggie!  My hair thinned quite a bit last year, but never completely fell out.  Thankfully my hair has always been so thick.  Well, when I hit the 3rd week after my first infusion, I took a shower and lost pretty much half of my hair.  I can't even begin to describe how horrible of an experience this was.  It was disgusting, gross and flat out disturbing.  I decided then that I couldn't bare the thought of attempting to wash my hair again.  So what did I do... I pulled a Britney Spears and shaved my head!  I went to a salon here in Austin called Top This Salon who specializes in Shave Parties for chemo patients.  I mean if I'm going to lose my hair I might as well have a few laughs and the support from a few family members and friends.  I wish I could have put a little more planning into my Shave Party, but I was leaving the next day on vacation.  I spent a week in British Columbia, Canada with a few of my besties and had the time of my life!  I'm not going to lie, it's been weird getting used to my bald head.  I would catch a glimpse of myself in the mirror and think, "oh my god, I'm bald!"  But it is what it is!  If I have to lose my hair to kick some cancer ass, then so be it!  Yesterday I had my 2nd infusion and I'll continue to have my infusions every 3 weeks.  Right now we're looking to have my next PET scan in about 6 weeks or so.  Until then and when I get a chance, I'll try to post some of my vacation pictures.  In the meantime, here are a few sneak peak pics of me and my bald head (and maybe a couple w/ my mohawk)... 

Casey's Cancer Kickin' Krewe - We're #1

Hi, my name is Casey and I'm the BIGGEST procrastinator EVER!!  I know, I know, I'm sorry!  I've always been a procrastinator and probably always will be!  Now that we've got that established, I have some great news...

 

Last November Casey's Cancer Kickin' Krewe not only had a blast participating in the Komen walk, but we were the top fundraising team!  BOOM!!  That's what I'm talking about! 

 Not only have I been wanting to officially announce that on my blog, but I have some pretty amazing thank you cards that if you haven't gotten one already, should be getting one soon (shout out to Courtney Mitchell Photography).  Anyway, I can't thank everyone enough who participated and who donated!  Another big thanks goes out to the Krewe's team captain... thanks Elizabeth!! 

 

So in April, Elizabeth and I attended a luncheon (hosted by Komen) that not only recognized us as the top fundraising team, but also announced the local organizations in the Austin area who will receive funds raised.  Let me tell you, being able to meet representatives from these organizations and also hear stories from woman who have benefited from these organizations and the funds raised... WOW!  It truly was inspiring to see how much our fundraising efforts helped members in our community!  WAY TO GO KREWE!

 

I'll be walking again in the this year's race and will also be participating in one way or another in the Texas Mamma Jamma Ride.  I'll be posting more details about this soon, but "The Texas Mamma Jamma Ride is a recreational bike ride to raise much needed funds for our central Texas neighbors coping with breast cancer. This festive event saves and improves lives by supporting 10 local nonprofit organizations providing diagnosis, counseling, medication, and support for thousands of our neighbors coping with breast cancer. Since our inaugural year in 2009, the Mamma Jamma Ride has raised an astounding $1,000,000!."

 

Stayed tuned for more details, but until then I'd like to share Komen's April 2012 announcement of the local healthcare organizations community grants...

KOMEN AUSTIN AWARDS LOCAL HEALTHCARE ORGANIZATIONS COMMUNITY GRANTS

April 12, 2012

The Austin Affiliate of Susan G. Komen for the Cure announced it will grant over $1.4 million this year, providing more than one $1 million in funds to local organizations in the Austin area and more than $400,000 to national research efforts.

Local non-profit healthcare organizations will implement breast cancer prevention, treatment and education programs for the uninsured and underinsured men and women in Travis, Williamson, Caldwell, Hays and Bastrop counties.

"This year 1,068 individuals in our five counties are expected to be diagnosed with breast cancer," said Christy Casey-Moore, executive director of the Komen Austin Affiliate. "We must continue to do everything in our power to make sure our community has access to care and resources related to breast health and breast cancer, especially those that live in the margins with limited means "

All applicants that are legally operating providers are thoroughly reviewed by an anonymous grant review panel and selected based on the service gaps identified in our Community Profile, a research study published every two years. Local grants are distributed by the organization’s ability to implement projects that specifically address evidence-based strategies and programs to reduce breast cancer morbidity and mortality for those disproportionately affected by the disease in the Austin Affiliate's 5-county service area.

The 2012-2013 Austin Affiliate local grantees include:

• Alliance for African American Health in Central Texas
• CommuniCare Health Centers
• Community Action Inc. of Hays, Caldwell, and Blanco Counties
• Helping the Aging, Needy and Disabled
• National Center for Farmworker Health
• Planned Parenthood of the Texas Capital Region
• Samaritan Health Ministries
• The Breast Cancer Resource Centers of Texas
• The University of Texas at Austin School of Nursing
• Women Involved in Nurturing, Giving, Sharing

About the Austin Affiliate of Susan G. Komen for the Cure®
We live here. We race here. We save lives here.

One out of eight women here in the Austin area will have to fight breast cancer in her lifetime. That’s why, since 1999, the Austin Affiliate of Susan G. Komen for the Cure has been hard at work here in the Austin area raising money to provide breast cancer screening, education and medical services as well as financial and emotional support. In fact, up to 75 percent of the money we raise each year is put to work right here in Bastrop, Caldwell, Hays, Travis and Williamson counties to improve the lives of everyone affected by this deadly disease. The remaining funds go to national research to find a cure for breast cancer once and for all. For more information about the organization, please visit www.komenaustin.org.

The "Other" Secret Weapon

Okay, I'm scheduled to get my new chemo cocktail tomorrow.  From there I'll be getting it every 21 days.  I'll still have to make trips to Tx Oncology for office visits (follow up apts) and lab work, but thankfully I won't be in the infusion room on a weekly basis.  Hopefully this secret weapon is "the one!"  

And please stay tuned for fundraising news and upcoming fundraising opportunities!  ;)

Chemo Cocktail #... What # Are We On Again??

The plan today was to start a new chemo cocktail... keeping with Tykerb, Herceptin, Zometa & Femara (a combo that I've been on the last 7 months), however we've taken Navelbine out of the cocktail and replaced it with Cisplatin.  Now, I've said this a million times, I LOVE having options, but I'm not going to lie... this new chemo cocktail was not one of our top 3 options.  Do you know how frustrating that is?!  The top 3 drugs that Dr. H recommended for me were quickly taken off the table due to various reasons... an unexplained spike in my lab work disqualified me from a trial, my insurance was unable to approve a drug b/c it had not been FDA approved, etc.  So over the last week I have convinced myself that maybe this new chemo cocktail is "the one" for me.  Everyone responds and reacts differently to each drug... maybe Cisplatin is "my drug."  Regardless if it's Dr. H's first pick or last, it could be "THE drug" that kicks this cancer's ass!  On top of my "convincing" myself of this being the one, I've also been preparing for what this new drug has in store for me.  How will I deal with the side effects?  Will I finally lose my hair?  I tell ya, after this last week, I'm emotionally and mentally drained.  And after all that, I walked into the infusion room today ready to start kickin' cancer's ass with my new secret weapon... Cisplatin!

(insert record scratching)

I'm sitting in the infusion room getting my Zometa when my Nurse Prac strolls in.  Before they even brought out my "secret weapon" Cisplatin, I'm being informed that the FDA approved one of our top 3 drug options AND my insurance covers it AND that's what Dr. H is wanting me to start.  Buuuuuuuut, what about the secret weapon I've been preparing myself for?  What does this mean?  Well, surely we're not limited to just one secret weapon, right?!  Ya, I didn't think so either!  So Cisplatin is being put on the back burner for some other time and now I need to get ready for another secret weapon.  Seriously, all this convincing and preparing myself for these new drugs is exhausting!!

So my new chemo cocktail will consist of Pertuzumab, Herceptin & Taxotere (in continuation w/ my Zometa & Femara).  I received my Zometa infusion today and now I'm waiting to hear when I'll start my other infusions (we're basically waiting for the pharmacy to order and receive the new drugs).  Until then I'm sure I'll be repeating exactly the same thing I did leading up to today... convincing myself this is "my drug," "THE drug" that kicks this cancer's ass and of course preparing for what this new drug has in store for me.  Oooooh, the viscous circle that is my life!

Here's to Chemo Cocktail #... Oh hell, I've lost track!  But this one could be "the one!"

Back to the Drawing Board... Again

Ugh!  We were SO close!  The ablation didn't get everything we were hoping it would.  Which really isn't a big deal... we knew there was a big possibility that they weren't able to get everything.  It appears that they annihilated the smaller lesion... yes, meaning it's no longer there.  Woohoo!  However they were only able to get a portion of the larger lesion.  So this is where the problem is... there are a couple of new lesions.  Granted they are pretty small lesions, but the fact is, the lesions are no longer "contained" like they were.  Which of course means that my chemo cocktail must have lost it's momentum (insert Debbie Downer music).  So back to the drawing board!  

Now I've said this in the past, but what's great about my cancer and my diagnosis, is that I have lots of options!  There are some amazing new drugs out there and Dr. H has 3 in particular in mind that she'd like me to consider.  There are of course the usual hoops and hurdles we need to jump through and over... for example, one of the drugs needs a certain Drs approval for me to start taking.  The reason for this is because it's no longer in a trial phase, but it's still not FDA approved.  And then one of the drugs needs approval from my insurance company.  So basically this week Dr. H has some wheeling and dealing to do.  I'll meet with her next week to discuss what she found out and which drug will be my best option.  

I'll keep you posted when I find out what my next chemo adventure will be.  The only question I have now is... how big is this drawing board?!? 

And We Wait... In the Meantime, We're Krewesin' for a Brewsin'

I am finally feeling better after my radiofrequency ablation (rfa).  As soon as I broke free from my antibiotics and pain pills last week, I surprisingly felt like a new person!  It's amazing how difficult it was to jump back into reality... the littlest things were just exhausting.  I made myself get out of the house as much as I could without overdoing it (believe me, I've heard the lecture and now preach it) and this week I'm feeling great! 

Not only am I feeling great, but my lab work is great and my tumor marker is coming back down.  After the procedure, my lab numbers were all over the place which is typical and expected after having something like that done to your body.  But anyway, last week my tumor marker went down from 131 to 111... not quite as low as we were earlier this year, but not surprising after the procedure.  Of course don't get me started again with my love/hate relationship with this tumor marker!  At least we're heading in the right direction!  And as for my lab work, the nurse not only said all my numbers were looking good, but that my liver was happy.  And who doesn't like a happy liver?! 

So I'm continuing on with my chemo cocktail and then on Monday, July 9th, I'm scheduled to have another PET scan.  The results from this scan will help us determine what our next step is.  We could do another rfa procedure to burn off what was left behind.  We could do a chemo embolization which I had described in a previous post where they actually inject chemo into the tumor site.  OR it is possible that they got everything the first time and I won't need another procedure.  How cool would that be?!  Yep, that's what I'm rooting for!  ;)  From there we would begin to transfer into the maintenance phase.  Oooooh, that sounds good! 

So you might be asking, what does one do with a happy liver?!?  My answer... celebrate with a few good friends and libations!

Yes, I know it sounds a little crazy that I would consider having a drink after what my liver has gone through, not just with this procedure, but over this entire last year.  This is something that I've discussed with my doctor on numerous occasions and the fact is, there is nothing wrong with my liver (remember, it's happy).  It's what's on my liver that we're fighting.  So when the time comes for a celebratory drink... I'm there!

So this weekend, 12 of us participated in a pub crawl, Austin's Crawl For Cancer™!

Here's a little background info taken from their website:

Our purpose and mission: 

Crawl for Cancer is a fundraising organization driven to plan and host events that support lifesaving research and those affected by cancer while having a little fun doing it!  Though not a charity, we are a for-profit company that donates 100% of our profits to the charities we serve.

What is Crawl For Cancer? 

Crawl for Cancer is an event where hundreds of volunteers, businesses and participants come together to help raise money to fight cancer.  Participants go to 5 bars and/or restaurants in a pre-planned order to partake in social networking and ice-cold, frothy beverages.  No actual crawling is required.  :)  What is required is to have a good time, be respectful and understand that all teams are here to help raise money for a great cause.

Oddly enough, it wasn't too difficult to convince a few of my "Casey's Cancer Kickin' Krewe" members to participate in this with me.

And now, I present to you our 2012 Crawl for Cancer team... "Krewesin' for a Brewsin'"

I had a blast... and all for a good cause!  ;)

And so we have some waiting to do before the next PET scan and the results... but that's no surprise!  As frustrating as it is, I'm actually getting pretty good at it!  

The Aftermath: Die Tumor Die

I mentioned in my "Operation: Die Tumor Die" blog post that I would be in and out of the hospital the same day of the procedure (put under local anesthesia) and I would be back to my daily routine after a few days of rest.  Well, that just sounds too easy.  And we should know by now that I don't like making things easy on anyone!  


So with this radiofrequency ablation (RFA), Dr. K and his partner, Dr. Vasan, were targeting 2 lesions that remained on my liver that the chemo was unable to reach.  One of these lesions happened to be in close proximity to my small intestine and the other one up against my lung.  Because of this, they were concerned that the heat from the ablation would heat up or cause harm to the small intestine and/or lung.  My "easy peasy procedure" wasn't sounding so easy peasy after all.  So to avoid complications with any other organ in my body, they put fluid into my abdominal cavity to be able to move things around, out of harms way.  By doing this, they were able to completely burn off 1 of the lesions on my liver and about 85% of the other lesion.  After being put under general anesthesia (breathing tube and all), the procedure took about 4 hours and I was required to stay in the hospital overnight to be monitored.  Thankfully they weren't serving fava beans and chianti!

I've been resting up the last few days and I'm slowly but surely feeling better each day.  I actually tried to cut back on my pain meds yesterday, but I quickly realized that was a BIG mistake.  I need to keep reminding myself that the procedure wasn't as easy peasy as I was expecting, never mind the golf ball size burns on my liver and the jostling around of my organs.  But hey, this has added a few more freckle sized scars to my right side.  Maybe when this is all said and done I'll have a tattoo artist connect the dots and see what we come up with.

So yes, this was a successful surgery.  Dr. K and Dr. V were very pleased with the amount of the lesions they were able to burn (considering their locations and their sizes).  But where does that leave us now?!  We still have 15% of one of the lesions still remaining.  I'm meeting w/ Dr. H this week (who has been consulting w/ Dr. K & Dr. V) to discuss the next step.  Anyone heard of chemoembolization?  This is where they inject a concentrated amount of chemo directly into the tumor.  Until then, I'll continue on with the chemo cocktail I've been on (every Wednesday for 3 weeks, then off a week).

I can't say this enough, but thanks again for your prayers, thoughts and good vibes throughout all of this.  We are just SO close to where we need to be!  

I'm Baaaaaaaaaaack

Thank you for all the prayers, good thoughts and good vibes!  I was released from the hospital this afternoon and I am comfortably back at home in Austin.   The surgery went well, but the pain meds are even better!  On that note, I'll fill you in on the details later.  Talk to ya soon!

Operation: Die Tumor Die!

When the time is right, the time is right!  Whether I'm having surgery in 2 months from now or 2 days from now, right?!  Well, I hate to rush things, but it's looking like it was "meant to be..." my liver surgery is in fact in 2 days from now.  Last week after receiving Dr. H's 2 Surgical Oncologist recommendations, I began the process of setting up my consultations.  I hate to admit it, but after meeting with one of the surgeons, my mind was instantly made up.  He was the one!  Dr. Kahlenberg gets the final rose!  The hoops and hurdles I was having to go through with setting up an initial consultation with Dr. Aloia was just too much.  I know that Dr. Aloia must be an amazing surgeon if he received a seal of approval from Dr. H, but over the last year I've also learned that your experience and interaction with the Doctor's staff and office should definitely be considered in your decision process as well.  

After meeting with Dr. Kahlenberg, I was sold.  I liked his demeanor, his confidence w/out being arrogant, he was informative, he was realistic with cautious optimism and I really appreciated the personal attention.  After several phone consultations... Dr. K with Dr. H, Dr. H with me and then me with Dr. K... we were all on the same page.  Not only did Dr. K have an opening this week, but it just so happens to be my week off on chemo.  Perfect timing!  I can have the surgery this week (having a higher WBC count than normal because it is my off week), recover and then continue on with chemo next week without skipping a beat.  Perfect!

So you might be asking, "what is it exactly that Dr. K will be doing?"  Well, it's a procedure called Radiofrequency Ablation (RFA).  Under local anesthesia, RFA is performed under image guidance (x-ray, CT or ultrasound).  A needle like RFA probe will be inserted in the tumor where radiofrequency waves will increase the temperature within the tumor resulting in TUMOR DESTRUCTION!!  Muahahahahahaha!!  

The procedure is scheduled for this Wednesday down in San Antonio.  I should be in and out of the hospital that day and after a few days of rest I should be back to my daily routine.  Now that's my kind of "surgery."  Unfortunately they weren't having any 2 for 1 deals to remove my ovaries at the same time (I need to talk to Groupon about this), but no big deal.  Getting my liver under control is our main priority so we'll deal w/ the ovaries at a later time.  

The crazy thing... I woke up on Sunday with "the pain" in my right side.  Yep, the liver quiver!!  The same pain that raised the flag that I had breast cancer... and this is no Pancho's mexican buffet!  To be honest, I'm not surprised at all.  If the chemo isn't able to reach this lesion AND the PET detected more uptake/cancer activity in this area... you know it's pissed.  I'm chalking this pain up to the tumor's F-E-A-R!!  This tumor knows that it's about to get a serious ass kickin'!!!  

Que Sera Sera

After meeting with Dr H, I feel like a weight has been lifted off my shoulders. The PET results are in and even though we're still seeing 2 lesions on my liver, we have the disease under control everywhere else.  So here is the deal... We're seeing more "uptake" in the main lesion on my liver, meaning more cancer activity.  This of course isn't what we were hoping for, wanting or expecting, but there might be a reason for this.  Dr H thinks that necrosis may have destroyed blood vessels along its path of cancer cell destruction, ultimately preventing the drugs access to this specific tumor/area.  Well, if this chemo cocktail can't infiltrate that war zone, then who's to say another chemo cocktail will.  So the good news there... I'm not having to change drugs right now.  WHEW!   So where does that leave us?!?  Surgery!  This is ultimately where we were heading.  Even though the lesions didn't shrink like we were wanting them to, they're thankfully not any bigger and we still have the disease under control everywhere else.  There are 2 surgical oncologists that specialize in abdominal type surgeries that Dr H recommends. There's Dr. Aloia in Houston and Dr. Kahlenberg in San Antonio. I'm setting up a consultation with each Dr to discuss what my options are (removing the lesions, freezing the lesions, liver surgery in combo w/ removing my ovaries, etc).  So if anyone has any input on either of these 2 Drs, I'm all ears!  In the meantime, looks like I have a couple of road trips to make in my near future... Stay tuned for "the rose ceremony!"  Dr Aloia or Dr Kahlenberg... who will get the final rose?!?


Oh, and yes, I will continue on w/ the chemo cocktail that I am currently on until I have this surgery.  If anything, I may cut back on the Navelbine as the surgery gets closer (whenever that will be) because that particular drug effects my WBC count so much.  And believe me, I'll need all the WBC I can take for a quick and easy recovery!!

This has been an exhausting last couple of days... this morning I woke up w/ Doris Day's Que Sera Sera stuck in my head.  It's hard to accept that whatever will be (will be), but I think this surgery is a step in the right direction to kicking this cancer's ass!  Que Sera Sera!

P.S.  I thought it was appropriate to change up the lyrics a bit... Please sing along and enjoy!  ;)

When I was just a little girl
I asked my mother, what will I be
Will I have cancer, will I be Stage IV
Here's what she said to me.

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

When I was young, I fell in love
I asked my sweetheart what lies ahead
Will we have chemo, day after day
Here's what my sweetheart said.

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

Now I have nieces of my own
They ask their aunt, what will I be
Will I be pretty, will I be rich
I tell them tenderly.

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be. 

"The Waiting is the Hardest Part"

"The waiting is the hardest part"... ya, ya, ya, you're preaching to the choir Tom Petty!!!

Still no results on the PET (and yes, I've left messages w/ my Drs office).  I can't tell you how frustrated, annoyed, pissed, scared, anxious and a mess I've been the last few days.  In the past while waiting on results, I've felt these emotions to a certain degree, but this time around it's different.  This time it's worse!!  We're just SO terribly close to where we need to be... one manageable lesion on my liver!  That's not too much to ask, is it?!?  I was telling someone earlier that I'm getting to the point where I don't want to know.  I don't want to deal with the possibility of having to change treatments because my chemo cocktail is no longer working.  I've got these side effects down... I don't want to deal with any new ones!  And really, there's nothing I can do at this point, but wait for the results.  In the meantime, I'll continue to work on finding the on/off switch to my brain... these sleepless nights are doing a number to the bags under my eyes!  I think I've aged 10 years in the last few days!  ;)

As usual, I'll keep you posted when I hear something...

Not so STAT

What a let down!  My PET scan was suppose to be this afternoon, but I received a call from Tx Oncology telling me that the PET machine was down and we needed to reschedule.  I can't believe I abstained from carbs yesterday and fasted for the majority of today FOR NOTHING!  Grrrrrrrrrr!  Oh well, at least I was warned before drinking the barium AND at least I wasn't in the machine when it went down.  Now THAT would NOT have been cool!

PET scan is scheduled for next Thursday.  Time to load up on carbs before next week!!  ;)

Up with Necrosis, Down with Cancer

Well, unfortunately the results from the CT scan aren't telling us much.  Or let me rephrase that, they're not telling us as much as we'd like to know.  This is the deal... comparing this last weeks CT scan results and my last PET scan results is like comparing apples to oranges.  The CT scan does not reflect how active the areas on my liver are.  A lesion on my liver may appear bigger than the last CT scan I had (which was back in January), but that's not necessarily a bad thing.  Stick with me here... The bigger lesion may actually be showing tissue necrosis (death of cells).  Obviously that would be BAD ASS!  At this point there is absolutely no reason to believe that the lesions have increased in a "bad way" (meaning the cancer has spread).  But to be absolutely sure, Dr. H wants a PET scan STAT!  Normally insurance wouldn't approve a PET this soon, but Dr. H put up a good fight.  My PET is scheduled for this Thursday.  

UP WITH NECROSIS!  DOWN WITH CANCER!

Salud!

After a nice loooooong 3 day work week, what do you want more than anything to relax and take the edge off ?!?  How about a nice chilled Barium martini?!?  Okay, not my first beverage of choice, but I've started prepping for my CT scan tomorrow morning.  I'll keep you posted when I find out the results.  Until then, SALUD!!! 

No News is Good News

Okay, so "no news is good news" isn't always the case, but this time it is!  I've been having too much fun over the last couple of weeks and have been neglecting my blog.  So let me catch you up to speed...

Because we got such amazing results from this last PET scan, we're going to stick with the chemo cocktail I'm on for another couple of months.  If we can get down to 1 manageable lesion, then Dr. H said they can go in there and cut, snip, freeze, or whatever it is they can do to "get rid" of the cancer cells/lesion.  Woohoo!!  From there we'll discuss possible surgeries... Surgeries haven't been an option for me up until this point because we needed to get everything under control w/ my liver.   From there I'll be on a maintenance program which can be anything from taking oral drugs, infusions or possibly a combination of both... but at least it won't be as aggressive or as intense as it is right now.  Not only will this help w/ the bone mets, but hopefully prevent the cancer from spreading back to my liver or anywhere else in my body for that matter.

I'll keep you posted if anything changes or if I come across anything interesting, funny or anything I just have to or want to share!

Btw, I'm feeling great!  After recovering from my infections and getting great news from my PET, I've been enjoying the hell out of the last couple of weeks!  ;)

Ass Kickin' in Progress

Yesterday I met with Nurse Prac Lisa to discuss the results of my PET.  Normally I would be meeting with Dr. H to discuss results like this, but for some reason the world did not stop for the results of my PET scan.  From what I understand Dr. H is enjoying time with her family on Spring Break.  Okay, okay, I'll let it slide this time.  Who knew it wasn't ALL about me?!?  ;)

So here we go, I have details about the results.  From the report itself, this is concerning my liver:

"Currently there are one or possibly two adjacent metastases within the dome of the right hepatic lobe as well as another subtle lesion within the right hepatic lobe inferiorly.  Previously there were at least 20 metabolically active hepatic metastases."

Hello?!?  20 down to 2, possibly 3 lesions?!?  WOW!  I couldn't be happier! 

As for the bone metastases, unfortunately the Neulasta injection I've been getting to boost my WBC, obscures visualization in the scan so we are unable to compare the bone mets to the results from my last scan.  Nurse Prac Lisa did not seem to be too concerned about this and quite frankly, neither am I.  My chemo cocktail includes an infusion called Zometa, which is specifically given for treating the bones, keeping the bone mets under control.  In past scans we have seen improvement in the bone mets while I've been on Zometa, so I have high hopes it's still doing it's thing!  And in the grand scheme of things, our main priority here is the liver (because it's a functioning organ) and getting the liver mets under control... which we are!!  Woohooo!! 

Btw, you won't believe what my CA 27-29 tumor marker is down to... on Feb 29th it was at 92 and on Mar 14th it's down to 81.2!!

Yep, I'd say there's an ass kickin' going on!

The Results Are In

Can you believe it... A cold front will move into the Austin area later today, bringing thunderstorms from late afternoon through early Friday morning.  What?!  Oh, oh, oh, you're wanting to know the results from my PET scan.  Well, there's nothing wrong w/ a little weather update...

 

So I don't know all the details (I will find out more next week when I meet w/ the Nurse Prac), but we do know that there is overall improvement concerning the liver metastasis.  Can I get a hell yes!!  I'm SO excited!  I just knew we were going to get good news!  Thanks to everyone who has been thinking of and praying for me.  Your support means the world to me!  After battling infection after infection... after infection... I needed this good news.  The nurse I talked to on the phone said Dr. H couldn't be more pleased w/ the results.  The chemo cocktail I'm on is looking like a winner.  Yay!!

Cheers!

This my friends is the Barium I'm required to drink before my CT and PET scans (1 of several glasses).  It's a contrast agent used to highlight specific parts of the body and make them easier to see... it temporarily changes the way x-rays or other imaging tools interact with your body.  I can't say it's pleasant to drink, but I guess I've had enough scans that I'm used to it.  Of course I think the umbrella helps... makes me feel like I'm drinking a pina colada on a beach somewhere.  I left the package of umbrella's w/ the receptionist at Tx Oncology hoping I'd get a smile out of the next person that came in dreading the milky white substance.  Fingers crossed it did!  I tell ya... it's the little things! 

 

So Cheers!  Cheers to kickin' cancer's ass! 

Finally!!

It's about damn time!  I had to revise what I was calling "Feeling Better February" to "Feeling Better March!"  Hmmmm, doesn't have as nice of a ring to it, but you now what, I'll take it!  I'm off antibiotics and my MRSA sores are healing the way they should be.  I don't want to jinx myself, but it's looking like I'm infection free!  Woohoo!!  

 

The last few months haven't been fun, but through it all, my CA 27-29 tumor marker has surprisingly shown a downward trend.  Now, before I get too excited, I have to remind myself that this is a marker that isn't 100% reliable... used more as guide that "should" (in theory) correlate to what's going on.  It's a blood test that is drawn w/ the rest of my labs that I can get more often than the much more reliable images of a CT or PET scan.  "If" my tumor marker is going down, I "should" expect to see positive results from a PET scan.  However back in Oct, before I started that drug trial down in San Antonio, even though my tumor marker was steadily increasing, a PET scan at the time showed an overall improvement.  Ya, doesn't make sense.  When I received the good news of that PET scan I was of course relieved and excited, but at the same time I was pissed for getting so worked up over the tumor marker increasing week after week... I had obviously been expecting bad news from the PET.  So for awhile there I have to say I lost faith in the tumor marker b/c I couldn't trust it. 

 

BUT now that the tumor marker is going down (moving in the right direction)... maybe I'll give it one more chance to redeem itself.  I have a PET scan on Wednesday and I just KNOW it's going to show good results!   I mean come on, the CA 27-29 tumor marker doesn't lie!!!!  Oh wait!  It does... Well, at least I can accept my love/hate relationship w/ my tumor marker!!  This time will be different!  You'll see!!

 

Lets take a closer look at what my CA 27-29 tumor marker has been up to! 

(Note: Normal range is less than 35)

 

"A day in the life of my CA 27-29 tumor marker"

08/01/11  160

08/17/11  244.9

08/29/11  315.4

09/07/11  278.8

09/15/11  271.1

09/20/11  304.5

10/04/11  320.6

10/17/11  412.6  (At this time, even though PET showed improvement, I decided to participate in the drug trial in S.A.)

November (I was not tested for this tumor marker while on the study)

12/05/11  (Results from CT showed more cancer on my liver so I was pulled from the trial... Back to the drawing board!) 

12/07/11  (New chemo cocktail begins.  Unfortunately I was not tested to see what my tumor marker was at this time)

12/28/11  714.6  (Yowzers!  That's high!  Wish I knew what the marker was when I started this cocktail)

01/05/12  343.7

01/18/12  210

02/01/12  132.8

02/08/12  201.3

02/15/12  127.7

02/29/12  92  (Woohoo!  Double digits!!)

 

My next PET scan is this Wednesday... so we'll see how accurate the tumor marker is this go around.  I'm hoping to get the results of the PET by the end of this week.  I'll keep you posted with the good news!!  ;)

MRSA MRSA Me!!!

Because 2 infections this year just wasn't enough...

It's mid February (what was supposed to be "Feeling Better February" I might add), and I'm taking my 4th antibiotic for my 3rd infection of the year.  SHESH!!  After recovering from the digestive system & upper respiratory infection, I had some other "minor" side effects going on that I was juggling with.  First of all, ever since I started chemo I've been having issues with my finger and toe nails.  They're not quite as strong as they used to be and they're not growing back as cooperatively as they used to either.  Weird, but if anything annoying!  About a week or 2 ago I had an ingrown toe nail removed and the root deadened.  First of all, who knew an ingrown nail could be so painful?!  Anywho, I got it taken care of and started all the procedures to avoid infection (soaking in epsom salt, treating it with antibacterial lotion, etc).  I mean come on, the last thing I need is another infection... I'm all over this toe!!  On top of that I started getting that "rash" I had not long after the holidays (thought to be caused by one of the drugs I'm taking)... several spots/"sores" all over my body.  There were quite a few, but there were 5 in particular that were bigger then the rest... 2 on my upper back (right on the bra line conveniently), 1 in the lower middle of my back and 2 on the upper back side of both legs.  I began treating them like I did previously and was looking forward to "Feeling Better February."  During all of this I got the approval from Dr. H to hold off on one of my IV drugs (Navelbine) and one of my oral drugs (Tykerb) to give my body a break.  Thank God!  I had reached my breaking point... enough is enough!  The month of January is not one I'd like to repeat!  Talk about being pretty darn uncomfortable!  

So this brings us up to last Friday... Overnight the "sores" got worse.  They had almost swollen up into welts, like I was stung by a bee.  Talk about EXTREMELY painful!  I could barely put any pressure on them so you could imagine me trying to sit down with so many of them on my back side.  Not fun!  So yes, I played the Cancer Card and got into my Dermatologist's office that afternoon.  Dr. Derm decided to numb one of the areas (OUCH) and take a biopsy and culture of the sore that looked the angriest... just so happened to be the one in the lower middle of my back.  She gave me some topical lotion, antibiotics and an Rx for pain pills to take "if" they started to get worse over the weekend.  Otherwise, we just needed to sit tight a couple of days and wait for the results to come in and hopefully find out what these things are and what's causing them.  So I start heading home.  Thinking I could swing by HEB to pick up a Rx or 2.  OH MY GOD!  OH MY GOD!  OH MY GOD!!  The numbing on my back started to wear off.  My back was on F-I-R-E!!  You should have seen the way I was driving!!  I was pulled up as close to the steering wheel as possible... irritating the hell out of the sores on my leg, but my back was just killing me.  And I was uncontrollably balling!!!  (Not to be confused with "a Baller").  How I made it home without getting into an accident is beyond me!!  That should have been the first clue that it was going to be a long weekend!

Saturday... HOLY CRAP!!  They got worse!!!  They got worse!!!  They were bigger, swollen and to be quite honest, PISSED OFF!!!  I can't really describe how uncomfortable I was.  Remember the movie Spaceballs?  Of course you do!  Then you'll remember the scene where the alien pops out of the guy's stomach and dances down the bar with the hat and cane.  Come on!!  Tell me you remember this!!  Well, that's what I was fully expecting to pop out of one of these sores!  To make it worse, I had to cancel my plans that night.  Seriously, I had a girls night out (a little rodeo and concert action down in S.A.) on my calendar for weeks.  I swear, I'm jinxed if I put anything fun on my calendar!  This cancer is REALLY pissing me off!!  So needless to say, I had a pretty rough weekend.  

Monday... back to Dr. Derm.  The sores, which I began to call "boils" (yes, a pretty disgusting, ugly word if you ask me), were just too painful!  Dr. Derm just had to do something.  This entailed more numbing and "expressing" the sites.  BLEEEEEEEHHHHHHHHHH!!  I'm not quite sure how much fluid she "expressed" from these "boils," but I could instantly tell that it relieved some of the pressure around them.  Thankfully J was my chauffeur that day so I didn't have to worry about driving.  I'm sure I looked pretty ridiculous w/ the way I was sitting, but at least I wouldn't be causing any accidents!

Tuesday... Well, at this point, J and I decided that we needed some help since I've been completely useless up to this point (more so than usual... just to clarify).  J had been waiting on me hand and foot.  So what a great excuse to fly in my mom!!  And what do you know... the biopsy and culture results are in!  Turns out I have a MRSA Staph Infection. (Insert: Debbie Downer Music).  

So what did YOU do for YOUR Valentine's Day???

After getting out of a nice long, hot shower on Tuesday night, I was standing in my bathroom, half naked, facing the wall, I noticed that I was tightly gripping (white knuckles and all) my towel rack to keep myself steady.  (Side note: If you think there is going to be anything sexy or erotic to follow... you're reading the wrong, damn blog).  I glanced into the mirror, saw my reflection and thought to myself... never in a million years did I expect to have my husband AND my mom standing behind me, cleansing, expressing and treating boils on my back side!  UGH!  What has my life come to?!?  Again, not something I was hoping to check off of my things to do in life list!!  I just knew I'd be able to laugh about it one day and was looking forward to the first person to ask me, "so what did you do for Valentine's Day?"  

So this week I'm back on Tykerb, but we decided to hold off on Navelbine another week since that infusion suppresses my immune system.  At this point we really need to get over this staph infection.  So yes, I'm on antibiotics for ANOTHER 10 days.  We've also added a weekly dose of Iron to my chemo regime due to a recent iron deficiency.  In the meantime, I'm going to enjoy my mom being in town and helping out and looking forward to my dad coming into town this weekend.  Oh look... a fun weekend that WASN'T on my calendar!  Ah ha!  Didn't see that one coming did you Mr. Cancer!!

For those of you who missed the alien scene... "Oh No! Not again!"