Bloggedy Blog Blog Blog...

I started blogging about the awesome events that have taken place over the past couple of weeks since I blogged last. I quickly realized that you can't go weeks without blogging and expect to slide in a trip to Colorado and a head shaving without a little disclaimer. So here it goes...

I've been busy!!!!! I have been working hard to juggle work, kids, and LIFE because more than ever, I appreciate the value of a minute, an hour, a day... Yes, sometimes it leaves me tired and a little weary, but I've finally learned to take a nap when needed :) I honestly wouldn't have it any other way. I am so fortunate to have a company with management and coworkers that are supportive and truly amazing. I am beyond fortunate that most of those people are also part of my amazing group of friends that inspire me daily. And my family? I am so lucky. My sisters all live so far away, from Hawaii to NY to VT, but their spirit, each in their own way, is so deeply embedded in my heart. I love you all. My Dad has made the trip from NY twice in the past few weeks and he'll be here again this weekend. He is simply amazing (wait til you see the pics!). My stepmom has dyed her hair pink and has sacrificed having my dad around for me (You're welcome, Mary :) ) and constantly redefines Badass in my book. My Mom will be here from NY for almost the entire month of September...I can't wait!!!  She is quite simply explained...my Mom :) And my stepdad is left to his own devices while she's here for a few weeks...sorry Larry!! I'm not sure what that poor man will do without her. She's amazing :) See you next Tuesday, Mom!

Ok, enough with the gushy stuff...I didn't even get to my friends! You'll see them in the Leadville and BUZZ photos :)

I've been up late at night on steroids so there are a few new entries on the way :) One more quick disclaimer though...

I have been absolutely, positively, atrociously terrible at returning phone calls, messages, emails, texts... over the past few weeks. I know you all understand, but I want to make sure each and every one of you know that it is not in any way, shape or form a reflection of how important you are in my life. You are all amazing :)

xoxo
Shelley

Not *exactly* what the Doctor ordered... Leadville or BUST!!

So when you go through chemotherapy and your doctor tells you that you shouldn't spend long periods of time in a vehicle (risk of blood clots in the port), you should avoid the sun (potential interaction w/chemo), and get lots of rest (duh), what do you do? Well, I'll tell you what I do. I hop in the car with an awesome friend and take a 1600 mile roadtrip to Colorado, spending most of the trip 2 miles closer to the sun and getting very little rest. Why on earth would I do that? Because I knew something the doctor didn't. It was a commitment I made months ago and I knew the whole weekend would prove to be the healing kind. And of course I was right ;)

Gu demons be gone!!

CF's got nothin' on this guy!

In April of this year, my good friend Brooks came to Kansas City from Colorado Springs to race in the Brew to Brew ultramarathon, a 44 mile race from Boulevard Brewery to Free State Brewery. The race benefits the CFF, Cystic Fibrosis Foundation. Brooks has CF and came here to win this race. I helped to crew him through, with my super-freaking-fast friend Andy (and his gf Lizzie <3) pacing him. Aside from expelling a serious Gu demon around mile 36ish, he kicked ass, finishing more than a half hour in front of the #2 runner. Watching someone like Brooks literally run for his life is beyond inspirational. He is an amazing example and truly one of the nicest people I know. When the opportunity arose for me to travel to Leadville, CO and help crew him through a grueling 100 mile race, I couldn't say no. So that's how I ended up in Colorado.

I was so excited that Kelly wanted to come with me, because that's a long haul to make alone and having her with me gave me the confidence that it was the right decision. And I just really love spending time with her! :) She had never really visited Colorado so it was so exciting to share! Two years ago, I made the trek to Leadville to crew for one of my closest friends, Andy Henshaw (Brooks' pacer), in the LT100. He took 4th place that year and it was an incredible experience for me. I have such an affection for Leadville...hell, the whole damn state of Colorado!!

So we packed up the car and headed West...

We spent the first night of our trip in Manitou Springs with our friend, Chris, who was running the Pike's Peak Ascent the same day as LT100. We were going to push on to Leadville, but it was a necessary stop to give Chris his Gu Demon t-shirt and wish him well on his race (which he kicked ass in!). After a quick night's sleep, we got up early to have coffee with Chris and haul ass to Leadville to catch the pre-race briefing.

Off Hwy 24 from Colorado Springs to Leadville 

We had such an amazing drive, it was really pretty surreal. From hot air balloons to picturesque vistas of the Rockies... so amazingly beautiful. It's safe to say that we were lucky to keep the car on the road as we were trying to hurry to Leadville and get pics at the same time. I'm pretty sure at one point, Kelly was hanging out of the sunroof with her iPad, snapping pics :) It was awesome.

High Mountain Pies...yum!

Mayqueen aid station!
We'll be back here in the wee hours of the a.m.! 

Eric and his kindergarten class on a field trip :) 

No one was hurt in the making of this picture.

So we boogied on to Leadville to meet up with the awesomeness of Team GUTS (aka Gu Demons). I was so excited to see Brooks and meet his amazing girlfriend, Holly and our team gear supplier, Eric ;) They had already set up camp (about 50 yds from mile 95 of the 100 mi race coincidentally) and Andy and Lizzie were close behind, driving in their minivan from Denver :) When the team was united, we took a drive to check out the first few aid stations, had a reenactment of the Gu Demon, ate some pizza at High Mountain Pies (yuuumm!!) and just relaxed by the campfire, preparing for the craziness that a 100 mile race brings.

Ahh...Simpler Times :)

A thunderstorm rolled in that night and although it was only about 4 or 5 hours, I got the best night's sleep I have had in WEEKS! Maybe even months... It's amazing how therapeutic the rainfall and fresh mountain air can be. All the damn 'anti-anxiety' options and sleeping pills my doctor has given me can't touch the effects of the sounds and smells of nature.

So we got up at 2:30am and headed to town for some coffee at Provin Grounds before the 4am race start.

Holly, Brooks, Kelly, Andy, Eric me and Lizzie

What happened from this point forward is only best told in a race report. I don't think I can really do Brooks' race justice.  I will do my best to hit some  highlights, but you should really check out Brooks' blog to see his perspective on this race. He is amazing, talented and put himself through complete hell over the next 21 hours, 21 minutes and 31 seconds. And I couldn't be more honored to be part of it.

Mayqueen aid station again...at roughly 5:30am
Brooks was in first place at 13.5 miles and looking good!

To make a long story short, Brooks led the pack for the first half marathon of the race, coming into Mayqueen in 1:43...what!?  Yup, he's crazy fast. In the dark with headlamps on, the 'RUNNING SUCKS' on his shirt reflected so clearly. We were all so excited but not quite ready for him! We knew we wouldn't see him for another 10 miles so we got him what he needed and sent him on his merry way.

Yo Fish Hatchery. 

Fish hatchery shenanigans

  Fish hatchery aid station was next and by now, the sun had come up and we were really having fun. Unfortunately, while we were goofing off at mile 23.5, Brooks' body was revolting and caused him some grief on his way to us. Regardless, he flew through ahead of his goal pace and was still looking good! We got to see him a few miles later at a quick little crew access and sent him again on his merry way. Next stop, Twin Lakes, mile 40.

                                       

Kelly taking salt duty at Fish Hatchery

I don't have any pics of Twin Lakes because he did a quick blister fix and got right the hell out of there.  We had a long haul to the 50 mile turnaround at Winfield so we got out there and set up shop.

Maybe now would be a nice time to remind myself that I was still feeling some backlash from round 1 of chemo, but as hard as I tried to nap throughout the day, I just couldn't! It was far too exciting!!

So we went to Winfield and chilled, counting and watching and waiting for Brooks to come in and Andy to pick up his pacing duties.

Mount Hope from Winfield Aid Station

Winfield Aid station, mile 50!

Ryan Sandes, team Salomon, who eventually won the race

As we waited, we got to see the top 10 roll in, with Brooks holding strong in 11th place. Ryan Sandes, from South Africa, came through and his crew made us feel slightly inadequate. We didn't have a HUGE umbrella with which to shade Brooks from the beating sun, no buffet of refueling foods, no hot blonde in white spandex to pace him through Hope pass... but we did have heart, passion, Eric and the Fembots crewing and Andy pacing. Somehow I think that it was more than enough :)

Winfield pit crew

We saw the guys at Twin Lakes, looking good and after a quick blister fix again, they headed out for a 15+ mile stretch.

Twin Lakes blister fix crew station

Heading out of Twin Lakes looking good!

The intention was to give Andy a 4 mile break and have Kelly pace when we met them at the Tree line access 11ish miles later. Brooks was feeling pretty crappy at this point and since Andy knew exactly how he felt, Kelly bowed out gracefully, not knowing how important her role would be in the near future.  

   

Brooks stepped up to a 8:30 pace for the 4 miles into the Fish hatchery. Yes, that's after running over 70 miles...

What happened next is a blur. We saw the guys through the Fish Hatchery, Brooks still in 11th place. There was a 10 mile stretch where we wouldn't see them and with headlamps on, they headed into the power lines. To be honest, in retrospect, Andy wasn't even himself at this point. So we went to Mayqueen (again) and waited. When the guys came in, it was obvious to us that Andy was done. He had gotten really dehydrated and needed to take care of himself. Like the amazing friend he is, he would have continued on, but as a crew, we knew better and had a backup plan. Kelly had been ready to run since the 4 mile stretch before the Fish Hatchery. She didn't skip a beat, running to the car to throw on a sports bra and pack up like Brooks' sherpa to get him to the Tabor boat ramp, 6 miles from Mayqueen, 7.5 from the finish. Have I mentioned lately how amazing Kelly is? Yeah, the day before we left for CO, she had her last fill from her mastectomy reconstruction. I doubt her doctor 'ordered' a late night run in the mountains, but she did it because someone had to...and because she's awesome. Brooks wasn't really running at this point. His body was saying NO when his heart was saying YES. When we caught up with them 6 miles later, he was in pretty bad shape, and desperately needed a 10
minute nap.
He had us set an alarm and seriously got up 10 minutes later to finish the last 7.5 miles of this race. Amazing.

Lizzie paced Brooks for the last 7.5 miles and kept him busy with her high kicks and sparkling personality. Another amazing example of stepping in when needed and just doing what needs to be done. She is such an amazing person and I'm so lucky to know this whole bunch :) 

We all met Brooks and Lizzie about a half mile from the finish to walk him in to the red carpet in Leadville.

The LT100 buckle, his 3rd consecutive. Impressive beyond words. Congrats Brooks!!

Andy, Lizzie, Kelly, Me
Eric, Holly, Brooks

In 21:21:31, Brooks finished the LT100. It goes without saying that most people won't even lace up their shoes and consider a race like this. I know Brooks was disappointed in his time-his goal was super aggressive and sub 19 hours. But to be honest, to watch someone like Brooks, who literally runs to keep his lung function and stay alive, have his body revolt and tell him to quit, take a nap at mile 92.5 and get up and finish...now THAT's impressive. It's easy to have a good race when everything falls into place. To have the obstacles that Brooks had and still finish NINETEENTH overall, with such an impressive time, I am humbled to have been a part of it.

Brooks, Holly, Andy, Lizzie, Kelly, Eric...and all the amazing runners, crew and pacers I met in Leadville...YOU are AWESOME!!!

Ok, so the story is over right? Oh, noooo...

So Kelly and I left while Brooks was in the medic tent with his amazing girlfriend and friends and went back to camp to get some sleep at about 2am. At about 7am, I woke up in the tent to the crisp mountain air and had a crazy thought. Our friend Laurie was also running and might be on pace to hit the 95 mile point any time now... I heard Kelly rustling around, told her my crazy idea and we both jumped up, bolted to the car, and planned to sit in the car by the road watching for her to come by. Keep in mind that well over 600 runners started this race and over 350 finished within the 30 hour cutoff. We knew our chances of catching her were slim...

As we drove the 50 yards to the road, we caught a glimpse of Laurie's boyfriend, Nick and his gigantic mountain man beard. NO Freaking way!!! We jumped out of the car and ran to her, hugged her and then quickly realized that we probably freaked her right the hell out. I mean seriously. You run 95 miles in Colorado and two of your friends from Kansas come barreling out of the woods at 7am in wool socks, pajamas and glasses with shoes untied, chasing you down the road. Poor girl!! But it was so amazing to see her! And she looked so damn good, we forgot she had just run 95 miles! Anyway, we brushed our teeth, cleaned up a little and boogied to town to catch her brilliant finish. 

Woohoo Laurie!!

And NOW the story is over. We stayed to say goodbye to our friends, but both Kelly and I had to work on Monday morning so we packed up the car and headed East...

Sigh. I miss you already, Colorado.     

So you tell me...should I have stayed home and rested, out of the sun? Yeah, didn't think so :) I feel amazing and got home in just enough time to get a few good days of work in before my Dad came back to hang out with me for chemo round #2. Stay tuned! It's coming up next!

xoxo 

Shelley

Chemo Day #1 of many...

So I figure you're ready for chemo day now and I almost feel bad that it was really uneventful. The actual chemo itself wasn't too bad for me, but the days to follow are another story. Here's how Thursday played out...

Best chemo bag EVER. Note the Amande yogurt. Cultured almond milk. Yum. Just saying... 

With a much lighter head, I had a horribly restless night's sleep on Wednesday night. I stayed up late, packing up my chemo bag, which included lots of...food! Kelly warned me that I would want to try to snack because the nausea can be overwhelming. So I had Trader Joe's ginger snaps, beef jerky, dark chocolate covered pomegranate seeds, you know, usual snack food. I packed an extra outfit which would prove to come in handy later on. And I packed my iPad...which was the best purchase I've made in a looooong time.  And thank goodness for my sister, Lauren, because the bag she gave me this summer was perfect for holding such a mess! And it has my initial on it just in case chemo brain kicked in and I got confused...

So Julia came and picked me up at home, brought me to the cancer center and hung out for a while before she had to head to work. She has been such an amazing friend to me with so much going on in her life. I am so thankful for such amazing friends :) We got to the cancer center and my work partner and dear friend met us there to help keep me company. My friend Andrea came by with some awesome magazines and hugs (she works in the center so I hope to see her often!). By the time we went in, my nerves were calmed and I was ready to go.

Check out that Power Port!! Sweet!

I was lucky enough to get a room with a view (Kelly recommended it and it was so nice to see trees!) and Lori and I actually worked and chatted through the whole process. They mix your drugs while you are there so the process isn't seamless, but I was tended to pretty quickly. This power port business is totally awesome because I only had to be plugged in, not stuck with a needle and it was really very uneventful. I got cozy, snacked a lot and really didn't feel much. The whole process took less than 5 hours, really probably more like 4. I had no idea the impact the treatment would have afterward, but the actual chemo itself was not that bad. It needs to be said, however, that having amazing company like Julia and Lori made it SO much better!

p.s. There was one completely sourpuss nurse there that I wanted to slap. Really lady? Is it so hard to smile when everyone ELSE around you has cancer?? I'm going to work on her in the weeks to come... :)

So, when all was said and done, I slipped into my wardrobe change and we went out for some snacks and a much needed beer :)

Wardrobe change...

Much needed beer!! With Lori and Julia <3 

So that's it, right? Ohhhh no. Come on, you all know me by now, right? So Julia drove my loopy ass home for a little nap. Then I picked up both kids from preschool/summer camp, met up with CP and Lauren and went to Sneak a Peek at the elementary school. Wait, quick backgrounder... 

Annika has been really anxious about her 3rd grade teacher. In our school, you find out who your teacher is on Sneak a Peek day. Well, unless your mom is resourceful and is awake at 3am checking the parent access portal on the school website. I knew at 3am that Annika got the teacher she wanted. I texted CP at about 6am on Chemo Day/aka Sneak a Peek Day to have her call me. So before I went into chemo, I got to tell my baby girl that she got the wish she hoped for. That was nice :)

Ok, so Sneak a Peek was a blur. I barely remember the time we spent and everything was kind of foggy. The kids were excited though and it went pretty well. Afterward, hugs and kisses and kids went off with Dad and Lauren. I went home to figure out how to function in the weird chemo world...  Too many pills to pop and too much weird sensation. I feel human today, but it has taken a few days. 

They gave me a regimen of steroids and anti-nausea meds, but I just feel woozy and loopy when I take them. Of course I take them anyway, but I am so happy that after day 3, I only take them if I feel nauseated. I will stay on warfarin for my port (to prevent clots) but it's such a low dose that it's just preventative. 

Side effects so far?  Chemo brain, forgetfulness, overly sensitive scalp (no thinning YET), really sensitive skin, dulled taste buds (dammit) and that's about all. Overall fatigue but I can't figure out if that's from not sleeping well or the meds. 

Ok, I'm tired. Friday I went to get my shot of Neulasta (to boost my immune system between treatments) first thing in the morning then I worked all day. I felt fine, but maybe just a little off kilter. I picked up the kids as usual and we had movie night. Saturday the kids went back to CP's and I just rested most of the day. Today was a big day, but I'm too tired to keep typing so you'll just have to wait. Goodnight Moon, Goodnight Dog, Goodnight Cat, Goodnight Blog...

xoxo

Shelley 

Grab a drink and a snack, this might get long...

Since I am starting to get chemo brain for real this time, I'm going to diary this so I can catch you all up on what happened this week:

Monday:
I worked with my boss, Kelly who is nothing short of awesome. Thank you for being so supportive and still doing your job so well. It was a busy day that kept me occupied and not thinking about the crazy days to come. I did have to run by CVS on the way home to pick up SIX prescriptions, mainly for anti-nausea meds. I have to laugh because I'm pretty sure that's more scripts than I've had filled in the past five years.

Tuesday:
Another great workday with Kelly worked passionately with Pink Fury (inside joke, sorry). Did I already say how much I appreciate her? Well, I do. And I had to squeeze in a late afternoon chemo education with Yvonne, Dr. Sharma's AMAZING nurse. She showed me the ropes and set out some expectations. She gave me a big red binder with all kinds of good reading (not) and tips on how to make chemo bearable. We laughed a lot and I promised her some granola. I know who to bribe :) I did have to have a MUGA scan too so that Dr. Sharma could get a baseline on my heart function, specifically the ejection fraction. Apparently the 'red devil' (you'll meet this bitch later) does quite a number on your ticker. Adriamycin aka Doxorubicin:

Doxorubicin's most serious adverse effect is life-threatening heart damage. 

So unless I want cardiomyopathy, I'd better keep my ass eating KFC (Kancer Fighting Chow) and running, climbing, skipping, jumping, whatever it takes to keep this ticker working well!


I am so lucky to have amazing friends who know how to make these foods and have the ability to drag my ass out to get my heart pumping. Lucky!!

Oh, did I mention that I crammed in a 4 mile run Tuesday evening? Yes, I have a heart to protect :)

Wednesday:
Well, since I didn't have nearly enough going on, I scheduled an emergency port placement with Dr. Shook. When Yvonne said the words 'permanent disfigurement' and 'nerve damage' when referring to what Adriamycin can do in a regular IV, I decided that I'd better get that port placed ASAP! Thankfully, my amazing friend Chris was up early and ready to drive my anesthetized body around. So I went in around 7:30, done by 11am and got to chill with my fave nurse, Carey, who took great care of me when I had the excision. Chris has yet to show me the YouTube video he took in recovery, but I am certain that it is floating around somewhere :)

What? Doesn't everyone wear an ice pack to lunch? I tied it in a bow to make it look nice! 

So afterward, we went to Houlihan's for lunch because I was STARVING! I am pretty sure that in my doped up state, I was very aggressive with the server and explained that I was SO hungry. This is what I looked like so can you blame him for rushing my food??

So on to my next appointment... Chris brought me to the KU Westwood Cancer Center where I will be having chemo. This place is amazing...state of the art. Anyway, he waited with me while I went in for my labs and my appointment with Dr Sharma. Then he passed me off to Erin to drive my nearly normal body home. I cannot thank you two enough for being there!! Oh, my appointment with Dr Sharma was rather uneventful and my labs were awesome. Who knew that having a Power Port would be so amazing?! Well, I guess I knew...but they didn't even have to stick me to draw blood. They just hooked into my power port. I'm a vampire's dream!

Ok, so go get another drink... I'll wait... Wednesday was CRAZY!!

Right before I left the appointment, I was chatting up some of the nurses (go figure) and talking about donating my hair to Locks of Love. They explained to me that I'd better hurry because no one will take hair that has been through chemo...duh!! So on the way home, I called my salon, Headmasters, in Lawrence (25 min drive) and my stylist is on (a well-deserved) vacation! So Jim, the other owner, and amazing man, stepped in and scheduled me for 5pm. Shit!! No time to get anxious! So I texted Kelly and she happened to be at a meeting minutes from my house. She came straight over and jumped in my moving car and off to Lawrence we went!!

Jim and I discussing 'the plan' 

As Jim was prepping to cut my hair, he explained to me that he just recently started teaching the Look Good, Feel Good classes at the local hospital for cancer patients. He teaches people like me how to embrace the bald, the loss of eyebrows, lashes, etc. What an awesome man!! So the girls gave me lots of hugs while I was waiting and Kelly and I had some Aveda tea to relax. So...here it goes!

Oh hair, I'm going to miss you :(

 

The pony

The pony...

Wow. 

Thank you Jim!!

Thank you Headmasters! 

By the time this was all over, Kelly and I were starving so we shared some noodles and drinks at Zen Zero and Rick rode his bike to meet us. We ate outside so my Power Port didn't scare other diners and had a nice relaxing time.

I've decided that Chemo Day is just too much for you all to handle right now so digest my new short 'do and I'll be back atcha shortly!

xoxo Shelley

Excuse me...I've been busy having cancer.

Alright, alright, alright! I know it's been a little while, but I've been busy having cancer! The cancer itself takes no time at all really, but juggling all the appointments, phone calls and medicines is a nightmare! The only volunteer I had for a personal assistant just moved to Colorado. Euler, Euler?

So what's been going on, you ask? Well shoot! Where do I begin?

Love you Julia!! Thanks for pretending you knew the chants with me!

How about my weekend? It was awesome! The kids and I had a nice relaxing Friday night at home watching movies since we were all pretty beat from the craziness the week before. We got up early and had whole grain waffles with our hometown maple syrup (thank you Nana and Papa!!) and since it was raining, decided to go get Smurf'ed AGAIN! and yes, we loved it just as much the second time around :) Saturday was errand day so it wasn't super fun for the kids, but it was 'normal' which we all need a little bit of every now and then. Saturday night, however, was AWESOME, CP was home and offered to take the kids overnight so I could go with Julia to the Sporting KC vs Seattle Sounders MLS match at the new Livestrong park (how appropriate, right?). I wonder if cancer patients and survivors get a discount? Just askin'... :) I can honestly say that professional soccer may easily be my new favorite sport to watch. We were both pretty tired but still managed to get caught up in the chants. The game is SO easy to follow. Yes, I'm in the market for a nice women's Sporting KC shirt and scarf. What a blast! HUGE Thank you to Julia for being an amazing friend and for thinking of me when she scored two tickets. Loved the game, love you more!

Ok, are you bored with my weekend yet? Too bad. This is my blog and I'll do what I want :) so Sunday I got up early and headed to the only Sunday market in KC (boo) and swooped up Kelly along the way. We both loaded up on tomatoes (owee on my impending mouth sores from chemo), lots of fresh fruit...peaches, more peaches, blackberries, blueberries, canteloupe...all the makings for a healthy week. It was a quick but mighty necessary trip made much more enjoyable shopping with Kelly. It's great to brainstorm recipes with a friend with similar health goals. Hey, Kel, love you :) Then I picked up the kids and we got an invite to meet friends at our gym pool. Although my underarm biopsy site wasn't *technically* supposed to be submerged, I figured since Shell is a Dr, I was safe :) So to the pool we went and had good fun. I even happened upon two random friends in the pool. Then this crazy weird storm blew in out of nowhere and one strike of lightning sent us all scattering, for good reason. So home we went and took a nap, watched movies and did what you do when you don't sleep well at night...crashed while the kids watched the Wizard of Oz. Awesome weekend all around.

Oh, I bet you want to know how that biopsy turned out, huh? For those of you not following me on Facebook, it was a very anticlimactic negative result on the nodes. Also, in the same breath, a very negative result on BRCA test (genetic). Dr Sharma picked it apart to look for other potential mutation and said it was definitely negative (you're welcome Karen).

So where did that leave me? With a confused oncologist. Somehow, from our meeting the week before, she understood that if it was negative, I wanted to proceed with surgery first. Uh, no! So I set the record straight with her nurse and we stayed on course for our chemo plan. Dr Shook (surgeon) called me on his first day back from vaca so I could let him in on the new plan. He was incredibly supportive and was hoping that I would have gotten that type of feedback from Dr Belt. He was apologetic and sincere and offered to get me in surgery for a port as soon as I needed it. Well that turned out to be much earlier than I expected.

Ok, before I go getting all 'cancer' on you, I've decided to start a new post for that. Sit still! I'll be back!

Xoxo Shelley

The Second Opinion

As you all know if you've been paying attention (there will not be a test, no worries), on Thursday I went to KU Breast Center to visit Dr. Priyanka Sharma. I also know that many of you have been waiting on an update. Um, yeah, so...I'm sorry. I needed some time to cool off a bit before I posted for your viewing pleasure. Why, you may ask? Well, honestly, I was a little ANGRY!

I have a right to be MAD!!

I've been working very hard on accepting my 'plan' for treatment, but I guess I've always had this gut feeling that things aren't moving fast enough and something is not quite right. Well, it turns out that I was right.  

On Thursday, Kelly met me at KU and as usual, was my rock as we waited patiently (for TWO HOURS!) to see Dr. Sharma. It was frustrating, but as soon as we (I) had her undivided attention, I immediately understood why she was worth the two hour wait. First of all, on the KU webpage, this is what she has listed as her specialties:

• Hematology and Oncology
• Second Opinions in Cancer

• Medical Oncology

• Oncology

What better place to go than someone who specializes in second opinions?! AND she was referred to me by my old (time reference only) boss and dear friend, Kristy, who works in Oncology now for Amgen. I trust her with my life. Obviously :) So anyway, we waited, were visited by the NP and a student and welcomed by everyone who was around. The overall atmosphere was very calming, reassuring...almost like a...spa?? But few guests were smiling. I guess I will always be the exception there :) Dr. Sharma did a quick exam because the majority of the examination and questions asked came from the NP. She consulted with Dr. Sharma before she met with me and we quickly proceeded to a consultation room. In the room Dr. Sharma explained to me a few things:

-She had 'concern' for me and the fact that it had been 3 weeks since excision (removal of the tumor) and almost 8 months since the tumor was 'found' and we were still 3 weeks from doing anything about it! (when she said it, it started to freak me out too!!) (For the record, it's been a week since my appt with Dr. Belt and I still have not heard a peep from him or his staff)

-There is a marker on the pathology report called the Ki-67 which no one has mentioned to me yet. I'm no doctor, but this seems *kinda* important when dealing with triple negative breast cancer such as mine, which is known to be more aggressive...

Ki-67 is a cancer antigen that is found in growing, dividing cells but is absent in the resting phase of cell growth. This characteristic makes Ki-67 a good tumor marker.

A breast tumor that scores high for Ki-67 is made of cells that are rapidly dividing and growing. Chemotherapy drugs target cells that are growing beyond the normal rate, and so these drugs can be effective on aggressive cancers. Knowing your Ki-67 score helps you and your doctor decide what treatment will work best for you.

In my research, I found that there are some women with a Ki-67 of 3-4% with growing cancer...my score? 81%!!!

-10 weeks (my previous plan) from excision is WAY too long to wait to start chemo

-The excision of the tumor takes away the opportunity for me to have Platinum Chemo because they need to have a tumor to track. Her opinion is that my lump should have been biopsied before removal so we would have had more options.

-Although the BRCA tests were negative, she needs to see the report (which was faxed today) to pick it apart and see if there were other abnormalities, mutations that could represent a genetic link. She's a smart cookie.

-Finally, (and I've been uncomfortable about this from the start) no one has tested my lymph nodes yet and I have an aggressive cancer with a propensity to travel. Breast cancer typically travels to the nodes in the underarm first. Hmmm... 

So I was quickly escorted down the hall to have an ultrasound on the lymph nodes. I know what you're thinking... didn't the PET scan cover that? I thought so too. No, the PET wouldn't necessarily have noticed a lymph node if it was small. Within a few minutes, the Wizard of Oz (or the nameless/faceless person who read the ultrasound) let Dr. Sharma know that there were nodes that showed up and he wanted to biopsy in the morning. Please keep in mind that most of the staff had gone home and we were well into after hours time at this point. I went in at 7:30am this morning for the biopsy (which was quick and uneventful except my armpit now hurts like hell!) and went straight to work for the day. The results should be back by Monday afternoon, Tuesday morning at the latest.

What does all this mean? Oh, did I fail to say that my plan has now changed DRAMATICALLY and I am now planning on starting chemo next Thursday? Yes, less than a week away. Trust me, no one can be as shocked as I was. As soon as those results come back, we will know exactly where we stand moving into it. I haven't cancelled all the surgery appointments over the next couple weeks yet because honestly, I was busy working today and thought that they could hold their horses. I certainly have! 

I think I forgot to mention that I have mixed feelings about the lymph nodes... No way do I want them to come back positive because it means it's traveling. Yeah, bags packed, looking for a beach and I'd hate for them to end up in the tropical paradise of my brain or lungs. However... there can be a positive to a positive node. If there is a tumor for Dr. Sharma to follow, I could possibly be a candidate for Platinum Chemotherapy. I really don't know exactly what that means yet, but since they don't offer Palladium Chemo, I figure it must be the best. So, we'll see on Monday! 

I promise I'm done being angry. I actually smiled a whole lot today :) :) :) :) 

Happy Weekend!

xoxo 

Shelley      

Once Upon A Time...

Ok kids, gather 'round. I'm going to tell you a story about a lump. Not just any lump...a lump with magical powers to grow and grow...

(I think before I move any further into the story of what is happening NOW, you all deserve the story on how this cancer came to be.)

Once upon a time there was a girl with a tiny little lump in her breast. She found it a very, very long time ago...late November of 2010. It was about the size of a pea and very easy to see and feel. (It is thought that this girl must be a true princess since she could feel the pea sized lump!) Like any smart girl, she went straight to her Ob/Gyn and got it checked by a professional. They immediately sent her to have the lump examined by mammogram and ultrasound. The nice tech at Diagnostic Imaging let her know almost immediately that the radiologist was not concerned and thought it looked like a cyst and appeared harmless. She said to keep an eye on it and follow up in 6 months. During that 6 months, a lot happened! She started a new job and spent 2 weeks in Philadelphia for training, then Christmas, New Years, a work trip to Dallas, her friend Kelly announcing her diagnosis with breast cancer... Wait! Stop the story. Yes, her friend found a lump at about the same time and started her treatment right then. Yes, this is the same amazing friend who is now the team captain and is cancer free... Ok, moving on... so needless to say, life got incredibly busy. And despite her friend's attempt to get her to follow up sooner, she waited until that cute little pink reminder card showed up in the mail 6 months later. (Really, did it have to be PINK?) So before heading to NY/VT for her little sister's wedding, she thought she had better get this thing checked. Now that the card showed up, upon closer review, it did seem like the little pea sized lump had grown a bit...

The new and improved magic lump!

So at the end of a workday, she went in for the recommended 6 month checkup, expecting a quick once-over and to hear that it was fine. Well, it didn't exactly go that way, but close. The tech took the pictures, left for a few minutes, returned and said 'The dr. would like to come in an examine you'. Well, 'hmmmm' she thought. 'This is weird'. So Dr. Hermann came in, did an exam and escorted her to his office to show her the images on his computer. A very nice man and obviously caring doctor, he strongly recommended that she visit a surgeon and have it removed as soon as possible. He did say that it showed the characteristics of a benign cyst, but it had grown nearly SIX times the size in just six months! A magic lump!

So based on the recommendation of her NP, she made an appointment to visit Dr Shook immediately upon return from vacation on July 5. Everyone agreed that enjoying vacation (which she did very much!) was important and then address this thing upon return.

Enjoying vacation at Lauren and Mike's wedding in Lake Morey, Vermont!!

On July 5, she consulted with Dr Shook who explained that often in a case like this, he would do a core biopsy before surgery. He really felt that with all of the characteristics of a benign cyst (we're hearing this more than once now, right?), it was a wasted step and they would biopsy it post excision. Aka: an excisional biopsy. A little over a week later, she went into surgery (Thanks Desiree for the escort and support! xoxo) and had that magical growing lump removed. Ahhhh :) The End. Right? Oh no...

So that was Wednesday, July 13. On Monday, July 18, the girl flew to New Jersey for a week long 'elite' training that she had worked hard preparing for. She arrived at the hotel at roughly 3pm and was scheduled to meet a group (of other employees from around the country whom she had never met) in the lobby at 5 for a dinner off site at an exclusive French restaurant. Excited about food (as usual), she checked in, reviewed the week's itinerary, quickly showered, dressed and was ready to go by 4:30. The cell phone reception in the room was horrible and as she got to the lobby, she realized she had missed a few calls. So, at 4:45 in the lobby she hovered in a corner to get the best reception and listened to a message from Dr. Shook. "Hey Shelley, Dr. Shook. Hey, we need to talk so I guess I will just call you back." (What? Stop the bus. There are few things in life that I hate more than "We need to talk". It's never good, is it?) So she waited about 3 minutes and decided to have him paged, hunted down, whatever it took for him to take the call asap. He called her a few minutes later from his car. So there she stood in the Marriott lobby in Princeton, NJ on the phone with him in his car having the following conversation "Shelley. I got your biopsy results. That thing was not benign. You have invasive ductal breast cancer." Oh, hey, Dr. Shook. Thanks for not candy coating it! So there she sat, in tears, in the hotel lobby (don't tell me you don't want to start singing the Prince song...'I met her in a hotel lobby...'). Alone. Horrible cell service. Alone. Among strangers. Crying. Until a recognizable face (a rep from KC) showed up. "Hey girl!! Uh...are you ok?" Nope. Sure not. So he booked her through the company travel agency on a flight that night back to KC. Hugs. Thanks. Headed up to the room to pack and home by midnight. To arrive at the airport to have Chris there to carry the luggage to the car (You rock Chris!) and to have Desiree and Kelly at the dining room table with cards and hugs waiting. They tucked her in bed and wished her sweet dreams. The best friends a girl could ask for...

The End.

So thankful for people who do not listen to my empty words, but hear the need in my heart <3

Abby Normal

As it turns out, when Dr Belt left me a message on Friday to let me know that my scan was clean, he meant the MRI too. So yes, my brain is 'normal'. Why did so many of you tell me to get a second opinion on that?! :) Ok, I know... my brain is far from 'normal'. But it is free of metastatic disease...aka CANCER!! And as far as my brain not being normal... I wouldn't have it any other way :)

Next up, meeting with Dr. Sharma at KU on Thursday for a second opinion. She apparently specializes in triple negative breast cancer and I've already heard so many good things about her. Is it weird that I'm kind of excited to meet her?!

I found out today that at least 3 women in my life have either just gotten or have scheduled their mammogram. I just want you girls to know that I am thankful for that. I love you all!! Save the boobies!

xoxo Abby Normal

Finally a positive negative!!!!

When I was first diagnosed and was told that I have triple negative breast cancer, I thought it was a good thing. Nope, not the case. As i described in an earlier post, breast cancer is fueled by different things. They test ER (estrogen receptor), PR (progesterone receptor), and HER2. Mine isn't fueled by any of those. One website describes triple negative breast cancer as a redhead. But instead of calling her a redhead, she would be a non-blonde, non-brunette, without a beard. So they really don't know how to reduce risk of recurrence because it's understudied and not completely understood. So in this case negative is really negative.

But today, on top of the awesome news on the clear PET scan from Friday, my BRCA test came back negative!!! Yay!! A positive negative...actually TWO positive negatives...in 2 days! The negative BRCA doesn't really change my course of treatment, but now having a hysterectomy isn't critical. And for my Annika Bea, this is fantastic news! And of course for my sisters! Although I am happy that my older sister is going to get a mammogram anyway. I love her too much for her not to do it :) So check that test off the list. Breast MRI: clear. PET scan: clear. BRCA test: NEGATIVE! So now we just wait on the brain MRI (hopefully tomorrow) and get this party started!

I got a call from a good friend on Friday who works for Amgen in the oncology division. She told me about an oncologist at KU breast center who specializes in triple negative cancer. She gave me contact info for a nurse and NP there. I am meeting with Dr Sharma on Thursday to get a second opinion and really hope that my decisions are clear. I hate making decisions and these are BIG ones. This appointment should tie it all together though and make the path a little clearer.

I am currently taking applications for a personal assistant to keep track of appointments, test results, coordination of the oncology surgeon, plastic surgeon, medical oncologist and every other person who wants a piece of me and my cancer. It's not a glamorous job and it doesn't pay well. Anyone? Anyone? Bueller?

Ok so that's it. It was a great day. I was told that the results would take another week and bam! They came back within an hour of my call. Funny how that works...

I also found out that my chances of starting chemo so soon after surgery is pretty slim. So it may be mid-late September before they start. Oh well...what's a couple weeks, right?

Before I start throwing in any other random happenings or thoughts from today...

Xoxo Shelley 'BRCA negative' Flones