Just before I lost my hair again, I had my hair colored. Cute, huh? Next time I might tone down the Annie Lennox look. Haha:

Let’s see… I get my last chemo treatment on Aug 20th – ironically the same date I STARTED treatment last year. Then I plan to enjoy the month of September here in Colorado and let my body recover, and then I’ll head to Houston in October for 6 weeks and live in short-term housing. I’ll be able to work remotely as long as I have my laptop and a phone. Living in Houston for 6 weeks will be a trip – no pun intended. It’ll be an adventure for sure!

The first burning question I’ll answer is what happened with that drug that cost me $543.00 for a 17-day supply? Well that’s lovely Xeloda. Yes, I say that with sarcasm. More on that in a minute. After applying to four agencies for hopeful financial assistance and being turned down by all of them, I was lucky that the manufacturer Roche has a “Patient Assistance Program” that approved me! So for the remainder of my treatment Xeloda is free! Thank you Roche!

The second burning question is how am I doing? Well Xeloda has caused me a host of problems. I’ve come down with this completely unexpected side effect: Hand & Foot Syndrome.

It’s a condition where your hands and feet turn red and purple and cause extreme pain, a burning sensation, blistering and ultimately peeling of skin (no matter how much you moisturize it). And yep, that’s my hand you see up there. Lovely, huh? So yeah, it’s caused me several problems. On bad days I can barely walk or even open a door or open bottle caps. Several times I haven’t been able to drive. Good times! The only solution is to lower my dose. So I went from 7 pills a day (2 weeks on, one week off) to 5 pills a day. It seems to be at its worst the day after an Ixabepalone treatment (the one via IV). Must be the overhaul of toxins in my body.

I’ve also had problems with my arm port. Unfortunately it’s caused me a blood clot, so now I’m on blood thinners. The port stays until the end of August. Other than the other usual side effects of chemo: dehydration, nausea, extreme fatigue, I’m doing fine. Except this time my side effects are more intensified.

Krystal accompanied me in 2nd treatment:

Christine accompanied for my 3rd treatment:

However, none of this has stopped me from living! Here’s a pic of us rockin’ out at the People’s Fair (June 6, 2010). Little did people know (other than friends) that I had on a wig and the arm band was to cover my port, and I had band-aids on my fingers so I could play guitar:

My artist friend Laurie Maves painted this picture of us performing! Eddie Garcia on guitar, Rob Cameron on drums, Greg Pasquariello on bass and Mark Mauldin on pedal steel and backing rhythm:

I spent a weekend in Aspen:

Here’s a camping trip I did with my sister with a bunch of other ladies (and 2 dudes). We went to Lost Lake campground in the Roosevelt Nat’l Forrest. Our campsite:

All the girlz. (L-R: Elana, Kimberly, Mandy, Krystal, Jen, Jody, April)

Memorial day weekend I camped with friends near Woodland Park. That was tough becuase my hand & foot syndrome kicked in for the 1st time – totally unexpected. I had no idea what was coming. I’ve also enjoyed a few Film on the Rocks (where they play movies at Red Rocks) and have seen a few concerts, like the Greeley Blues Fest, Thievery Coorporation at the Bottom’s Up in Aspen, and Tool at Red Rocks.

In other news I’m now the new Social Coordinator for a cancer-survivor groups called “YES – Young Empowered Survivors”. So keep your eyes open for some upcoming fun activities!

Then, I perform once again at this years Westminster Relay for Life on Friday, August 6th! Free to all. Anyone can come to this thing. I encourage my friends to join me this year! Usually I just show up by myself (or with band) and play. This will be my 5th year to not only do the Survivor walk, but perform…so please mark your calendar!

I look forward to getting the treatment over with and getting my hair, eyelashes and eyebrows back (again), but I’m not letting this treatment stop my summer! As per usual I’m enjoying camping and hiking, just not going as much. And I usually hit up hot springs but I can’t as long as I have hand / foot syndrome. Summer is my favorite time in Colorado. =)

THANK YOU to my family and friends that continue to support me (and get me out of the house!) during this crazy-ass time.

XO,
Elana

Now that I’m back from Houston and have got the ball rolling with my treatment, here’s the low-down:

MD Anderson was like the Cadillac of cancer hospitals. It spans 7 city blocks and has a bridge nearly a mile long. My sister and I had to take a go-cart just to go from one building to another. This place is impressive, with modern and state-of-the-art research, technology and service. It’s design and architecture were equally impressive, with calming fish tanks at every corner and towering novel sculptures.

I meet with my oncologist there named Dr. Koenig. To cut-to-the-chase, the hypothetical possibility of what happened to me is known as “needle-tract-seeding” and it’s excruciatingly rare. She suggested Ixempra and Xeloda. Ixempra is FDA approved for locally advanced breast cancer in patients whose tumors are resistant or refractory to anthracyclines, taxanes, and capecitabine. I had the latter of the two in my 1st round of treatment. Xeloda (a pill) is used for metastatic breast cancer that is triple-negative. Moi.

((Inset: If you’re need to be brought up to speed, read the April 8th post titled “This Journey isn’t over Yet”))

Although Dr. Koenig had a treatment plan in mind, she still wanted to present my case to a breast cancer conference. On the day this occurred my sister and I hung out in one of those mini waiting rooms. 20 or so minutes later a hoard of doctors pilled into the room, all laden with their white coats, glooming at me, asking questions. Surely this was similar to being abducted by a spaceship of aliens with I being the abductee.

Kim and I in one of the larger waiting rooms. Note the bubbleliscious water tanks in the background:

After the conference, in addition to presenting my case to yet another board of Dr’s, Dr. Koenig heard the suggestion of either Adriamycin alone (which is an anthracycline) and is very-very old school, and agreement to her recommendation of Xeloda & Ixempra. This wasn’t the 1st time I’d heard of Adriamycin. Although it is commonly used in treatment for breast cancer, three doctors in Denver (Dr. Rifkin, Dr. Paul and Dr. Hesky) were wary to use it with me because of the impacts it would have on my heart. Being that I have received mantle-field radiation (Hodgkin’s treatment), that apparently places me at high risk. Yet I haven’t had any issues with my heart that I know of.

So I took this suggestion back to Dr. Paul (whom had already spoken with Dr. Koenig while I was still down in Houston) and Dr. Paul said we could go either way. Infuse Adriamycin over a 48-hour period (as that seems to reduce the effects on the heart), or go with Xeloda & Ixempra. One being a 3-hour intravenous situation and one being a pill. Per the article here, the later choices have been FDA-approved where the cancer has become resistant to taxane and there are medical reasons why anthracycline cannot be used. So technically, I am a “medical reason” to not use anthracycline (Adriamycin) – unless I went with the 48-hour infused situation. Good times.

The winner for us was Door #2: Xeloda and Ixempra. I will take Xeloda by pill (7 pills a day for 2 weeks, then one week off and do this for 4-6 months), and Ixempra by IV six times every 21 days. Sadly, however, I learned that just a 17-day supply of Xeloda cost me $543.00 out-of-pocket (insurance only covers 80% of prescription). Who can afford $543 every three weeks?!? So I gotta figure something out. Panic!!

By the way, if I didn’t have health insurance I would probably buy Xeloda and order Ixempra at this online pharmacy. ; -)

I started this treatment on Friday, May 7th. My dear friend Emily took me and accompanied me. Here I am sporting my new “do”, which is debatable on if I’m going to lose it or not with approach. If I don’t, I plan to color it, “punk” it out, be playful and sport it this summer. Woot!

The night before I started chemo, some loving fellow chicka-boom-boom’s joined me in suppport of my “celebration” at my most favorite sushi restaurant in Denver. Hapa Sushi! Without my fellow chicka-boom-boom’s, this would be a much harder journey to bare. Thank you my champions!

(L-R: Christine, Lisa, moi, Amada, Rachael, Jennifer, Melissa, Amanda, Laurie).

Now with the chemo explanation aside, I met with Radiologist Dr. Strom at MD Anderson. It should come as no surprise that I am NOT a fan of radiation. That #@%&! caused this #@%&! to begin with. Plus I had heard from surgeon Dr. Bateman, Dr. Paul, and Radiologist Dr. L…whatever, here in Denver that it would likely cause serious damage to my implants and nearby organs, which alone brings with it more consequences. Not!!

Okay, onto the “light at the end-of-the-tunnel” side: Dr. Strom in Houston has this state-of-the-art device that aims the radiation to the skin only – without penetrating the implant or the rest of my chest cavity (heart, lungs, etc). Remember, the recurrance occured in the skin from the biopsy needle scar. In addition, this radiation uses electron-technology and is 18-years advanced from the shit I received in 1992.

Lastly, not a single radiologist uses this special device in Colorado. Thus, I would have to “live” in Houston for 6 weeks. If approved by work, I may work from Houston for 6 weeks around the month of October. Why October? It’s recommended that I start no more than 2 months out from finishing chemo. With six treaments every 21 days, I’m scheduled to end on August 20th. I’m giving myself the month of September to enjoy the Colorado glory before diving into this last part of this journey. And hopefully by then it’ll be OVER!!! You hear me? Universe? Over!

My most favorite part of the trip was Galveston TX, which brought back fond memories of childhood:

After some shopping, here I am sporting my new hat and a breezy sundress:

My friend Donna came down for a visit! Here we are in a Mariott hotel lounge.

Daddy-Pat also came down and stayed a few days. Here he is about to make me his famous “cowboy coffee”:

Lastly, thank you to Ryan for the digs!!

PERFORMING SUNDAY, JUNE 6TH @ THE PEOPLE’S FAIR!! 11:30 AM, INTERIOR STAGE. PLEASE COME BY!

Until next time… !

Following my “Celebration” gig at the Toad Tavern on March 5th, on March 17th I had my breast reconstruction surgery (part of the process any woman goes through when they do this). They sent in a tissue sample to pathology. To everyone’s surprise, one of the samples came back as a recurrance of the same breast cancer I had before: Triple negative infiltrating ductal carcinoma. Except this time it has metastisized into my chest wall (aka: the skin) as I no longer have breast tissue. So not only has the cancer come back, the metastisis alone has categorized me in “Stage IV”. Shocking, right? In case anyone is curious, I was originally Stage IIA. Yet the good news is that there are no visible or measurable tumors in my body – anywhere. This was caught in cellular form. So technically, I’m called a “Stave IV NED” – No Evidence of Disease.

Here’s something to chew on: The sample that returned as positive was the EXACT site where the initial biopsy needle was inserted back in June 2009. The site left a little scar. I’ve learned that this is termed “needle tract seeding”. And yes, I did have a vacuum-assisted biopsy. It’s very hard to find articles on this because it is so rare.

A few months after my final chemo treatment (Dec 09′) I noticed that the scar changed color and size. This alarmed me. I called my Dr and he immediately scheduled an ultra sound. This occured Feb 24th. It came back “negative”, appearing as a sebaceous cyst – two doctors said this. They also ran a CBC (complete blood count), which also came back negative. Regardless, I was still uncomfortable with the scar and asked the surgeon to remove it during my reconstruction surgery. Instincts!

Had he not done that, I would be sitting here right now writing to you thinking I was free of this and that I could get on with my life. And believe you me – I was READY! My hair is starting to grow out and I was ready to get my travel pants on and bust outa here! I had a great summer planned with backpacking trips and concerts. I was ready to look forward and beyond.

But the fact that this was caught like it was is also equally a blessing! Another blessing is that the other tissue samples sent in (normal protocol) came back negative. Thus, the cancer recurrance is localized and in the same exact area it was before.

Good news: I feel FINE, actually. I’m back on my feet and have my energy back. Also, because this was caught as the early stage (still in cellular form), as already mentioned – there are NO visible tumors in my body. This is confirmed via the bone scan, MRI and Pet CT I have now done. It’s early enough to DO something! I am also thankful for how supportive and understanding my peers and superiors have been at my job at Level 3.

This has also taught me that “triple negative” breast cancer means business. Click HERE for more info. It’s known to be agressive and more prone to recurrance than the other breast cancers. 20% or less of all breast cancer cases are “triple negative”. There’s also not a targeted therapy for it today in 2010. However, there are tons of clinical trials occuring on this as we speak. That said, if I had a wish for the $$ going towards breast cancer research, it’s the hope that they’re focusing on this rare form of breast cancer. Please click HERE for the Triple Negative Breast Cancer Foundation.

What does this mean for me? I have to act FAST. I have also decided to be more proactive with my health and get not just one, but THREE opinions. I’m taking this to the TOP. I have a great amount of respect for my physicians Dr. Paul and Dr. Bateman at Rocky Mountain Cancer Center” (RMCC). However – of there’s anything I learned from reading Lance Armstrong’s “Its Not About the Bike” – it’s to get multiple opinions. Your health is in YOUR hands and YOUR responsibility. To be proactive could save your life. Don’t make decisions on YOUR health based on one person’s opinion. You don’t have to take yourself seriously (I don’t), but you have to take your health seriously.

Thus, on April 16th I will be headed to Exempla for my 2nd opinion, and the week of April 19th I will be headed to Houston, TX to talk to the experts at MD Anderson – known to be the top cancer center in the nation. I was approved as of TODAY. Yay!

This diagnosis also means that yes – I will have to undergo treatment again, except this time it will be different. Different in what way? Different drugs and more frequent (ie: it could be once a week as opposed to once every 21 days like last time). My plan is to take the data I have gathered from all of my sources of opinions and will make an informed decision about my treatment.

As dissapointed and unhappy as I am about this, it’s something I’ve got to do. I just hope that I can still enjoy my summer and make the most of it. If there’s anything that saddens me about this, it’s the interruption, the set-back, and having to “re-think” this to the point of acceptance and trying to get back to that “fighter” mind-set I had before.

All I can say is…. Watch out Europe 2011!! Are ya with me on this? HIgh FIVE brotha.

Thank you to my friends who came to support me during my “Celebration” gig on March 5, 2010. Here’s a few of those hellions:

John, Christine, Scott and Pam.

And thank you to Colorado Music Buzz for your support!

And lastly, if I fail to immediately respond to your attempts to reach me, please know that it’s nothing personal. I will do my best. It’s also helpful to be treated “normal” sometimes and not place a lot of energy on the topic. Your thoughts and support are a constant reminder of human compassion and lets me know that I am not alone in this fight. However, forgetting about it gives me the nice vacation that’s long overdue! LOL.

My current “fight” is to not allow this to own me. And most importantly, to not allow this to define me. Life moves on and so will this!

Stay tuned for the story about Houston!

Hugs to YOU!,
Me

I wanted to bring in the New Year with style. That said, here’s a cool pic taken just moments after midnight in downtown Denver. The Sheridan hotel blasted fireworks from its rooftop. Here you see the surreal reflection of the sky party in the nearby buildings. Double the pleasure, like double-mint gum.

And here I be. Making the most of the wig-moment of my life. On the up-side, aren’t wigs cute!?

On that note, I’m learning to work around this no-hair business. Every morning you have to think about your head. It’s like, “Oh Yeah. What contraption do I walk out with on this day?” It’s like having a stereo with a broken speaker. It’s annoying but tollerable.

Hats rule. Like this one. I LOVE this red hat! Here I am holding a new born baby boy named Henry.

While on the subject, I’ve thought about the benefits of a hairless life:

1.) The money you save because you don’t have to buy razors, shaving cream, shampoo, conditioner, hairspray, flat irons, curling irons, blow dryers or gel. Whew! That exhausted me for a minute.
2.) Free’d up counter space.
3.) The endless possibilities of multiple-personality syndrome with all the various looks you have.
4.) Ignoring the aisle of hair products at your local grocer.
5.) No more bad hair days. Sorry, that was cliche’ and predictable of me. 8Þ

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My seestor Kim was with me during my last treatment. Here are some pics from that day. This was taken about half an hour after I was done. I look tired.

During treatment passing time. My favorite fun, cozy cap…

When I was done the nurses gave me this certificate and some gifts. They made it very special. I’ve graduated! This cert says “Elana Rogers formally, officially, and emphatically concluded her chemotherapy regimen as prescribed and administered by the caring professionals of Rocky Mountain Cancer Centers.”

Afterwards we celebrated with an exoctic Korean BBQ meal. Chicken soon-to-be cooking on our table.

Mom and Kim came up from Dallas to see me for XMAS. It was our 1st time ever to have it together in Denver. Thank you Mom and Kim!

Globe trotter:

The look I will not leave the house with.

Kim was here for Thanksgiving too. Here we are with Tempa and friends:

I escaped to Mt. Evans one day in December for a hike:

Gotta have some purple geese-feet!

And finally, kudos to the man who’s been there for me during this journey, Mr. Glyn Jones:

What’s next? Getting my body back to normal, which will still take some time. Next surgery is March 17th. Let’s just say that my Dr did not tell me “you’re cancer free”. I think it’s more assumed. With the surgery plus the 4.5 months of chemo, we’re going with – I’m covered. The next step is going in for bloodwork every 3 months. They’ll look at these criteria called “tumor markers” to see if there are any changes. I’m pretty amazed that they can just tell by looking at a “tumor marker”.

I’m looking forward to a long-overdue vacation! My birthday is January 13th. And on the music front, I’m working on a celebration gig with the boys! Eddie Garcia on guitar, Mark Mauldin on pedal steel, Rob Cameron on drums and Spencer Pyne on bass. Keep your eyes and ears open for a gig in early March!

UPDATE: Celebration gig at the Toad Tavern on Friday, March 5th!

Until next time, have a happy and wonderful 2010!

Elana

Me and April:

Room full of people having a great time, dancing:

An auction:

A raffle:

Performances by…
Naor Nave:

Tempa & the Tantrums:

Melanie Susuras Band:

Performing “Mesmerized”:

Something Underground:

Performing “We Shall Overcome”:

Demon Funkies:

More peeps and friends:

Lots of lovin’ in the oven.

So I’ve now had round 2 and 3. With 6 total, I’m half way through! So far, the primary “side effect” has been hair loss (yep, smooth noggin) and a serious lack of energy which I fight to keep going. I’ve had only one fever and haven’t had any issues with nausea. I miss my yoga and I look forward to get back to it soon.

Round # 2, which Emily joined me for. “Jesus, I’m drunk”…on chemo.

Afterwards she helped me shave my head. Monk Elana. Om.

Some various new looks…

And courtesy of Glyn …

Round 3 with Dad. He drove up from Marfa, TX to be with me for a few days.

Here he’s reading my Lance Armstrong “It’s Not about the Bike”:

Until next time… PEACE, love and thank you!

So a few things have happened since my last entry. With a 5-minute advance warning at the Aug 7th ACS Westminster Relay for Life, I was asked to since the National Anthem to a field of at least 100 people Yikes! Um, can anyone slip me the words on a post-it note?

That’s me in my pink “LIVESTRONG” shirt:

Below, that’s me in the pink shirt standing out like a sore thumb amongst the crew of other Survivors. This year I made a personal decision to continue wearing the pink Livestrong shirt, yet honoring the 2009 Survivor purple shirt over my shoulder:

Also new… I’ve cut my hair shorter! This was a drastic change for me. The fateful day was August 15th. The last time my hair was short was 17 years ago – coincidentally shortened because of the pseudo hair loss from the radiation treatment I received at the time. So since then I’ve had long hair and haven’t gone back until now. WOW.

Here’s an example. 1992-something:

THE HOLY COW DAY…

Lexi and I: pre holy cow. My stylist for the past 4 years.

Gotta have a PBR for times like these…

Last strand standing!

Boom! Check out Rebel Salon off of 33rd & Blake:

So now (surprising to me) this new drastic measure of mine has been quite rewarding! Had it not been for the impending hair loss I wouldn’t NOT have considered doing this. But given the number of compliments it warrants, I’m re-thinking my decisions. So when it grows back folks I might let it hang out at this length for a while. TBD…

Here’s Amanda and I at Red Rocks on Aug 17th:

Our buds of “Something Underground” with Tempa, Pauly, TD and Hazel Miller played on the main stage – opening for Woodstock the film.

The IVF freezing process was a success! Two weeks of night and day injections paid off. The surgery was a flawless and now I can rest easy at night knowing that I have this safeguard behind me. I learned through this process that many women in my situation do the same thing. I am not alone. Except for taking goofball self photos like this one…

As planned, my first treatment (first of 6) was on Thurs, Aug 20th. My friend Stephanie was with me for the 1st half, and then Melissa joined me for the 2nd half. How did it go? Well, weird.

Friendly Stephanie:

Me freaking out (just kidding)

And so it begins. My expression, “you’re kidding… right?”:

When I got home I had little to no energy. It was like a heavy feeling like molasses. But then by Friday I was bouncing off the walls. Then the weekend came and went and I was drained of energy, napping at random, yet able to run errrands just fine – like paint my kitchen Terrarium (when it was previously boring white). I was feeling creative. I did the whole kitchen and yes – all by myself! Hi Phoebe buttercup. =)

]]> http://elanasjourney.com/2009/08/26/round-one/feed/ 2 http://elanasjourney.com/2009/08/06/august-one-wild-month/ http://elanasjourney.com/2009/08/06/august-one-wild-month/#comments Thu, 06 Aug 2009 06:50:40 +0000 elana http://elanasjourney.com/?p=172 Things are in-between and in-the-middle of things. We’re looking at post surgery, in the middle of daily injections and office visits, and 2 weeks out from chemo (slated to start Aug 20th), and I perform tomorrow night at the American Cancer Society (ACS) annual Relay for Life in Westminster. Wild! But hey, I’m a trooper, have my wits about me, am strong and gotta do what I gotta do. I can’t imagine what it must look like to those looking in. Stressful, yes, but not to fret. You take your already-existing skills with you when you enter new challenges. You also try to sieze every opportunity.

Speaking of siezing opportunities: Outside of enjoying this summer’s Mile High Music Festival (with Thievery Corporation, Jett and Widespread Panic to name a few!), one of the coolest things happened while being “in between” things. I took advantage and skipped off to the Indian Peaks Wilderness for a weekend of camping! July 24th & 25th. Thanks to my lovely girlfriends Tiffany and April. Yayness!

Which leads me to a sneaky dropping of a hink. WINK. Come spring / summer 2010 I want to do a “celebration trip” with any takers for a possible week-long backpacking trip in the Yellowstone National Park! Sound cool? Only a few seats left.

Here’s some pics from our adventure. More pics in alumn bottom right.

Three cool chicks in a super cool forrest…

Check out our posh cribs. Our canopy rocked! Jealous? Hehe.

THE coolest place to have lunch…

4 miles in on our 8 mile hike. In other words, our turning around point. Our “Eureka!” view:

After living in Colorado for 7 years, I still can’t get over the Alpine wildflowers…

You can jingle my bells.

I love the smokey mountains in the background with glaciers resting upon them….

Ain’t nothing like some good Indian food after some good camping in the Indian Peaks Wilderness!

The great crowd during Theivery Corporation:

Jet

Tempa and I having some “hair” fun… Cute!