Mellow Yellow

Over the last couple of weeks I have had so many things I've wanted to blog about and share (how successful Art Bra Austin was is a good example and wanting to share pictures of my outfit), but to be quite honest, I've been feeling pretty crumby lately (yes, I decided to go the PG route in describing how I feel).  I started my new chemo cocktail on May 8th (an infusion I would get once every 3 weeks), and even though I was told it was going to be a rough one, I kept thinking, "sure, I'll have a rough week and then I'll have 2 weeks to live it up and have some fun."  Welllllllll, that's not exactly how it went down.  The last 3 weeks have been pretty miserable (again, PG version).

On top of the extreme dehydration, nausea, stomach issues, hair loss (thankfully I've started out again with a thick head of hair so it's not too noticeable), and what turned into a constant pain in my right side (yep, the liver quiver)... there's also the chest/stomach pains I've been having.  Unfortunately these pains became so bad that I would instantly throw up.  I've been taking an anti spasm medicine for my esophagus and after tweaking the dose a couple of times, these chest/stomach pains are finally better.  The endoscopy I ended up having thankfully came back clear, but the GI Dr believes this is all stress related.  I'm sorry... stress?!?  What is that???  And what could I or my body be possibly stressed about?!  Weird!

So this is the deal... I was supposed to get my 2nd infusion this week.  After keeping Dr. H updated on a regular basis on my side effects and how I've been handling them (or not being able to handle them), and walking into her office and having her comment on how yellow I was... chemo was put on hold and a CT scan was ordered that afternoon.  

The results are in... The lesions on my liver are slightly larger, but the problem is that the lesions are interfering with bile in my liver getting to the bile duct.  

Side note:  Before I go on any further, here's a little fun fact about bile... because don't we all need to know a little more about bile!  And no, this is nothing fancy, just some quick info from Wikipedia (however reliable or unreliable you find Wikipedia)... 

A bile duct is any of a number of long tube-like structures that carry bile.  Bile, required for the digestion of food, is secreted by the liver into passages that carry bile toward the hepatic duct, which joins with the cystic duct (carrying bile to and from the gallbladder) to form the common bile duct, which opens into the intestine.  Blockage of the bile duct by a cancer, gallstones, or scarring from injury prevents the bile from being transported to the intestine and the active ingredient in the bile (bilirubin) instead accumulates in the blood. This condition results in jaundice, where the skin and eyes become yellow from the bilirubin in the blood. 

So yes, this explains my yellow hue.  Tomorrow I will have an outpatient day surgery where they will put a drain in my liver which will alleviate the backup of bile in my liver.  Next week we'll do some more lab work and see how this procedure is helping out.  If this works (or should I say when this works), I will have a lot more options as far as chemo goes.

Prayers, good vibes, positive thoughts and energy are of course welcomed!  As far as me needing any help... from what I understand, this should be an easy peasy procedure and I have a ton of family in town and coming into town to help me out.  I'll keep you posted on how things are going as soon as I can.  

I also can't wait to share with you some of the more fun and entertaining "chapters" in my cancer journey.  My Art Bra Austin experience is at the top of the list, but I also can't wait to introduce you to my new BFF!  Gotta love a teaser!  Now I just need to feel better to follow up on these blog entries!  ;)

Comfortably Numb - A New Cocktail

I'm not quite sure why I'm not freaking out at this point.  I'm still going through all the same emotions I've gone through in the past when we've switched up my treatment... I don't think I'll ever not go through the worrying, the nerves, or the "what ifs."  But for some reason this time I feel a little more numb.  Numb in a... in a way that I'm okay with.  Lets call it, comfortably numb.  

Maybe I've come to terms with and I'm accepting of the fact that TDM1/Kadcyla and the 1,000 drugs I tried before that, weren't the right drugs for me.  And maybe this next treatment isn't the right one for me either.  But what if it is?  One of these days we're bound to find the right drug.  Right?!  

Maybe this is just my new "normal."  I'm not quite sure what normal is anymore... it's been redefined so many times since I was diagnosed.  

Maybe now that I'm retired I don't have the added stress of trying to make it into work or worrying that if I don't work, I won't get paid. 

Maybe it's having faith that everything will be okay. 

Maybe I don't need a reason or an explanation as to why I feel "comfortably numb."  

Tomorrow I'll start a new chemo cocktail...

Epirubicin, Cytoxin & Herceptin 

Let's get this new treatment started!  It could be the right drug for me!

 

I... Have become comfortably numb.

Mixed Emotions

I'm not exactly sure how to start this blog entry.  I have a few mixed emotions going on here.  The new treatment I'm on (TDM1 or Kadycla) isn't exactly working.  Who am I kidding... In no shape or form is it working.  I had a PET scan on Monday and the lesions on my liver are bigger and showing more cancer activity AND it spread to a couple lymph nodes in the abdomen area (in addition to the lymph nodes that were detected on my last scan).  Well, SH*T!  Now what?!  I have no idea and I have to wait till Monday to talk to Dr. H about our new game plan.  Well, I can't say I'm that surprised in these oh so disappointing results.  I knew my body was trying to tell me something.  Over the last 2 weeks I've been experiencing this "discomfort"... not quite in my abdomen and not quite in my chest, but somewhere in-between.  I've been taking Prilosec for heartburn and then started taking Carafate which treats ulcers and was about to make an appointment with a Gastroenterologist... and then we received the PET results which helped explain the mystery discomfort.  Wouldn't you know it... (insert suspenseful music)... it's my liver!  Because this is such a different pain/discomfort then what I've experienced in the past, I never thought for a second it was my liver.  In a weird kind of way I'm relieved it's nothing new!  The 3 lesions might be bigger, but hell, things could be worse!  At one point last year I had over 20 lesions on my liver!  So ya, things could be worse!

Anyway, this week hasn't been an easy one... anticipating the possible bad PET scan results and now processing the bad PET scan results and everything that comes with it (starting a new drug, new side effects, etc).  Let's see, I'm worried, I'm pissed, I'm scared, I'm sad, I'm frustrated, I'm confused and I'm tired!  Yep, to sum it up... this sucks!  

Cancer has basically become my full time job.  It consumes so much of my life and my day to day activities... Drs appointments, lab work, chemo, recovering from chemo, more appointments, more lab work, scans... sometimes it feels like it never ends.  

I had my week planned out with lunches, get togethers and dinners.  Even though I've been feeling a little "discomfort," I was looking forward to catching up with friends and having a few laughs.  Well, after this emotional roller coaster I've been on, you have no idea how badly I wanted to bail and cancel all my plans.  And then I realized, I CAN'T and I WON'T let this disease control my life and deprive me of the fun and good times I look forward to.  And THAT is how I'm kickin' cancer's ass!!

P.S. I'm looking forward to seeing y'all at Art Bra Austin in a little over 2 weeks.  If you're unable to go and would like to help me raise money for the Breast Cancer Resource Center (BCRC), here is the link to my fundraising page... CLICK HERE!  Thank you!

Art Bra Austin 2013

On May 18^th, the Breast Cancer Resource Centers (BCRC) of Texas will present Art Bra Austin! Art Bra Austin is my non-profit’s signature fundraiser and is a runway show featuring an eclectic collection of art bras modeled by BCRC clients—and this year I am one of 60 women who will be modeling these amazing works of art!  

This exciting event is instrumental in BCRC’s efforts to enhance awareness and expand the certified patient navigation, support groups, and education services that BCRC provides for FREE to 2,500 clients throughout Travis and Williamson County.

www.artbraaustin.org

And did I mention that I'm modeling this year?!  Ha, that's right, this is my first year to model in this event and I couldn't be more excited yet nervous and anxious at the same time.  That's why I'd love your support!  This is such a fun event and I'd love to see some familiar faces in the audience.  I hope you can make it... besides the food, drinks, entertainment and raising money for an amazing organization, you'll get to see me modeling a bra that my friend Brandi and I designed and created ourselves.  I don't want to reveal too much at once, but here's a little teaser... the title of our bra is "Reelin' In the Big'uns!"  Ha ha!  You're intrigued aren't ya?!?  Stay tuned and I'll post a sneak peak of the bra and our inspiration behind it before my big modeling debut!  But what are you waiting for?  Order your Art Bra Austin tickets today!  This event will sell out so don't wait till the last minute!

If you're unable to attend, but still want to help out in some way... The 2013 Art Bra Austin models have set the goal to raise $25,000 for the organization that served as our rock throughout our journey with breast cancer. My personal goal is to raise $500.  Whether you have donated to a fundraiser I've participated in in the past or would like to and are able to donate now, your support in helping me raise money for the BCRC means the world to me!  Not only have I seen how beneficial and much needed the services of the BCRC are to their clients, but I've also benefited from these services as well!

So please, join me and help ensure that no one faces breast cancer alone by donating to this amazing organization at Casey's Story & Fundraising Page or by copying and pasting this link...

https://secure.commonground.convio.com/bcrc/signuptofundraiseforartbra2013/project.html?personalFundraisingProjectId=a0iU00000011f8xIAA&showMessage=true

Thanks in advance!!  I hope to see you on May 18th!!

Another Cancer First & A New Drug

I have a lot to catch you up on so let's get started...

Thursday, March 14
I had a PET/CT (2 in 1) scan that we can compare to the PET/CT I had on Jan 28th.  Because I had this 2 in 1 scan, we're able to measure the size of the the lesions on my liver as well as measure the cancer activity. If only my insurance would cover this 2 in 1 scan every time!  Anyway, the results showed there are no new lesions on my liver AND the existing lesions have improved. One of the lesions measured 22.5 and currently measures 15.5 and another lesion measured 19.2 and now measures 11.1.  We couldn't be happier with these results.  Woohoo!  That means the Carbo/Gemzar cocktail is working!  Of course if you're a follower of my blog, you know it can't be that simple!  So here's the deal... The cancer has actually spread to 2 of my lymph nodes. So that means the Carbo/Gemzar isn't working?!?  So do we stay on this cocktail after seeing so much improvement on my liver??  Or switch to something else because of the slight progression of lymph node metastasis???  We ultimately decided to milk this cocktail for all it's worth!  If its working on my liver (which has always been our priority), then let's give it 2 more cycles (6 weeks) and then scan again and see where we are then.  Whew! We have a plan!

Monday, March 18
I'm all ready in the infusion room to get my Carbo/Gem cocktail and everything comes to a screeching halt (you would think that I'd be used to this by now).  My lab work came back and my hemoglobin was so low, Dr H ordered a blood transfusion.  Eek!!  I haven't ever needed a blood transfusion!  My blood work had been on the low side for quite some time, so I wasn't completely blind sided by this.  So anyway, I received my first blood transfusion.  Just as an FYI...  Possible transfusion reactions may include Kidney failure or Anemia, Heart failure, Hepatitis, AIDs, or other infections, and Xanax.  Oh sorry, just to clarify... Xanax is not a possible reaction, but was just on my list of things to refill after being told about the possible reactions.  Anyway, so far so good!  And supposedly this transfusion can help with my energy level.  Ya, I hope whoever donated this blood was an athlete and health nut... Maybe I'll all of a sudden become more motivated to make it into the gym and start eating better.  What!?  There's nothing wrong with a little positive thinking!  Anyway, the cocktail was temporarily put on hold until my blood work bounces back.

Tuesday, March 19
I found out that my tumor marker jumped from 94 on March 6 up to 110. Not a huge deal, but since this tumor marker has been pretty reliable lately, Dr H wanted to test it again on the 21st.

Thursday, March 21
Uh oh, tumor marker jumped up to 145.  So maybe it's time to change drugs after all.  Well, for the last 2 years Dr H has been trying to get me into a clinical trial with a drug called TDM1 and for whatever the reason (blood work, insurance or whatever), I never qualified to participate in the trials. Well guess what?!?  This drug was finally approved by the FDA.  The drugs new name is Kadcyla.  Seriously, who comes up with these names?!  But talk about great timing!

Monday, March 25
I started my first dose of TDM1/Kadcyla and I'll have this infusion once every 3 weeks.  I can't say I've ever been more excited about starting a new drug.  It's been out of my reach for 2 years and you have no idea how frustrating it is not having access to your doctor's first drug choice!  I told Dr H's nurse that the only reason my tumor marker started to go up was because when my body found out that TDM1 was approved and we were staying on a cocktail that seemed to be losing momentum, it responded with, "hell no!  I want the drug you've all been raving about!"  The great news is that I'm feeling great and I think we're starting out on this new drug in a good place.  And from what I understand, there are typical chemo side effects that come with this drug, but they should be minimal.  YES!!!

Lovin' my STD

I know, who would have thought I'd be enjoying my STD so much!  I mean, Short Term Disability has really helped me out!  What?!?  What were y'all thinking I meant?  Anyway, I'm thankful to have short term disability because it's making for a nice transition into my "Disability Retirement."  I've been bombarded with paperwork and unfortunately it takes awhile applying for this and that (something you can't do until you officially stop working).  So with my chemo treatments, Drs appointments and dealing with all of this... I feel like I'm still working.   And by the way, I'm not quite sure I like the way Disability Retirement sounds. From here on out we'll just call it Retirement.  Disability Retirement makes it sound like I have a terminal, incurable disease... Oh... Wait...   (Cue the chirping crickets!  Seriously, these crickets need to be on standby at all times!).

So a quick recap on what's been going on with my treatment... My tumor marker has been steadily declining which is great news.  A couple of weeks ago it took a turn and started to go up, but thankfully that didn't last long and it's heading back down in the right direction.  When I started this cocktail my CA27-29 tumor marker was at 462 and as of this week it's down to 96.8. Woohoo!  We're back in the double digits.  Dr. Hellerstedt is trying to get a PET scheduled in the next couple of weeks so we'll have something to compare to the last PET scan I had. I'll keep you posted when I find out more.

Until then, my lab work has been pretty low (WBC, RBC, etc).  I was able to get one of my drugs on Monday, but because my WBC was so low, I was given a WBC booster shot on Mon and Tues and I was back in the infusion room Wed to get the remaining three drugs.  We're also monitoring my hemoglobin which has been low.  There's a chance I'll need a blood transfusion, but I'm waiting till Dr H says I absolutely need it.

Since my schedule has been flipped around and upside down this week, I'm grateful I don't have the stress and pressure of trying to make it into work.   So yes, you could say that I'm loving my STD... Paving the road to a stress free, relaxing Retirement!

(Thanks Baby B for inspiring me to make this blog entry)

Anticlimactic

Going into my PET scan this week I just knew we were going to be getting some ass kickin' results.  Unfortunately, that wasn't the case and the lesions are looking worse than my last PET.  And you know what, this is the first time that this has happened and I'm completely okay with it.

Okay, I know I'm getting some head scratches, confused and puzzled faces and a few "what the hell"s from some of you.  So let me explain...

We're comparing this PET scan with my last PET scan and my last PET scan just so happened to be in July.  Let the record reflect that I've changed chemo cocktails 4 times since then.  4 TIMES!!  Obviously 3 of those cocktails were big flops with me... so you can imagine the lesions getting more and more pissed.  It wasn't until I started this Carbo/Gemzar cocktail that 1. I started feeling better  2. My tumor marker started to go down and 3. We started to see improvements on my CT scans.  Ideally it would have been nice to have a PET right before or at the time I started this new cocktail, but unfortunately insurance doesn't approve PET scans as often as CT scans.  And just as a reminder, PET scans measure cancer activity and CT scans measure the actual size of the lesions.  So there's really no way to compare this weeks PET scan with my last CT.  It would be like comparing apples to oranges.  

So yes, if I had a PET scan in November, we would have been seeing some ass kickin' results.  Dr. H is confident that we're making progress on my current cocktail so we'll keep on truckin' and I'll continue to 1. Feel better  2. See my tumor marker go down and 3. See improvement on future CT AND PET scans.  

Talk about being anticlimactic!  Oh well, I'm back in the infusion room tomorrow.  Whoa wait a second.  What is today?!?  Okay, I'm back in the infusion room on Monday.  Sorry, that's not chemo brain, that's retired brain!  Ha ha!  So even though the results weren't ass kickin', I just know this new cocktail is kickin' some cancer ass!!