I've definitely got a Golgi Complex

My words of wisdom frequently come from my Yogi tea tags as I sit down to blog. In fact, tonight, I decided that I would base my chemo post on whatever my tea tag told me :) Perhaps it's a little coincidental that I was drinking Gingko Clarity tea for mental clarity?!

~To be great, feel great and act great~

Thank you Yogi for making this so easy :) In an earlier post, when I said I was dancing like the whole world was watching, I guess it's really the same thing, right?

That's cover material if I've ever seen it! Love you Kel!

So as many of you know, yesterday I became famous. (no, this is not where the Golgi Complex comes in) Ok, maybe not really FAMOUS, but Kelly and I graced the cover of INK magazine in a great article written by the awesome Sarah Gish. It was so amazing to read our story from an outsider's perspective and to see the timeline laid out so clearly. Aside from feeling a bit like an exhibitionist ;), I am as free spirited as Sarah would lead you to believe and I wouldn't have it any other way. I am also SO thankful (in case you haven't noticed) to have been 'cocooned with love and support by family and friends'. I couldn't have said it better myself.

Thanks for the awesome pics, Jen Hack! 

There was some anonymous criticism to the 'heavy, huge, constant publicity and attention' that breast cancer gets and although everyone else seems to get it, to be honest, I'm pretty confused. I am thankful that the research has been done and that I'm alive right now. Unfortunately, not enough has been done yet and I'm left hanging with the rare type of breast cancer that is still under-researched and needs more answers to give me a better prognosis long term. I am thankful for Susan G Komen's sister who was passionate enough to create a movement so powerful to generate the dollars for this type of research. If it's lung cancer that has taken your family member, please start a movement! If it's childhood cancer, do something like my amazing friends Deliece Hofen, Tim Lockyear and the Supporting Kids Foundation are doing. I'm not sure why anyone would take the opportunity to attempt to cast a gray cloud over such an uplifting article. I'm really and truly sad for the anonymous critic who has lost so many family members. But I am also really super happy to be alive today :) 


It also really made me think about this article in a different light. Was it really about breast cancer? Maybe a little. We're losing our breasts. It's a tough obstacle to overcome as a woman. But aside from making our boobs a bit famous, this article is really about so much more. It's about love, support and friendship, facing adversity with confidence, and dancing like the whole world is watching. It's about living your life like you don't care that you're bald. (I have a friend who has alopecia, not even cancer, and she inspires me every time I see her beautiful face!) It's about acting great, feeling great and being great :) Nope, still not the Golgi Complex! But if you really want to know, I'm done with this topic anyway...


Your Golgi Complex is invading my Endoplasmic Reticulum!


Today was chemo round #13, Score: AC 4, Taxol 9...3 rounds to go in 2012!! Yes, I am done chemo for this year! 


I've been feeling pretty crappy this week. On Christmas (separate post on its way!), Josh had a nasty little cold. It crossed cp's mind to offer to keep him instead of risk getting me sick. NO way! I will take my chances, but I am NOT missing out on a Christmas with my kiddo. He's 6 and he still gets SO excited. I really needed that this year. So I (of course) was blanketed in kisses and snotty noses all day and got a scratchy throat, aches and was ridiculously tired in the days following. 

Santa ROCKS!

After the serious dip in WBC's and ANC last week, I was SURE that this week's numbers would be ugly. I was optimistic that they would let me have chemo regardless since I get a Neulasta shot tomorrow anyway. So I had my usual good looking chemo date crew with me (this week was an all-time record of attendees! Thanks Chris, James, Desiree, and Adam!! Love you all!) and lo and behold, my counts were actually UP!! In fact, my ANC was within normal range for the first time in a 3rd consecutive round of Taxol. Hmmm... in the words of my acupuncturist/herbalist/friend Travis, 'You are an oddity!' Well, yeah, Travis! We've known that for a LONG time! But really, what the hell is this spike in ANC all about? It makes no sense whatsoever. Unless... I did get one really special gift from Santa in my stocking...  Yup, a scientific model of a white blood cell. (The Golgi Complex and Endoplasmic Reticulum are just components of the cell but they sound so fun, I just had to include them :) ) Could this be the secret to the rise in counts? I guess we'll never really know, but now you have to decide...do YOU believe in Santa? I do :)  


*did I mention that James made homemade paw paw donuts for chemo that were SO delicious?! You rock James!!


Ok, so here's what's next:


Jan 11-appt with Dr Sharma (I was wrong on the last schedule)
Jan 12-Chemo: Taxol round # 10 of 12
Jan 13-Coleen's Frozen Fat Ass Run (EVERYONE should be there! Come one, come all!)  
Jan 19-Chemo: Taxol round # 11 of 12
Jan 26-Chemo: Taxol round # 12 of 12!!!!!!!!! Partayyyyyyy!!!


So today, I feel great...I'm pretty sure I acted great (especially leaving chemo in my movie star sunglasses, with my INK magazine in hand, and 3 handsome men following me through the lobby. If only they had worn black suits and earpieces...) so I guess that means that today was pretty GREAT!! 


Cheers to normal ANC, a massive cocoon of love and support, and another round of chemo under my belt!!


xoxo
Shelley 

The Purge

With the recent appointing of my Life Coach (hehe), I was strongly encouraged to upcycle some items that aren't being utilized anymore. So on a trail run, I gained some clarity (as usual) on a way to do this and feel really good about it. My friends who love to sell stuff are probably going to cringe at this thought, but I decided to just give it all away. I don't have time to mess around with selling each individual item and I would MUCH rather see my loved items go to a loving home.

Note to self: When you have cancer and decide to have a purge party, you should probably let people know that it's just to simplify life, not because you're dying! I kept plenty of stuff, no worries :)

I wasn't sure how to go about inviting so with a lack of time (of course), I decided to just cast a small net on Facebook of people who I knew would be interested  even if only a few could make it. I wasn't sure how it was going to work and I really wanted to prevent brawls in my house over coveted items. hehe Luckily, everyone who came was very well-behaved and lots of people went home with some goodies. Coleen and Ashley even brought their own purge which was AWESOME! I got some goodies too!! :)

James did me the biggest favor by taking my toaster oven and all accessories off my counter. I need room to bake granola, people!! And every man needs a toaster oven, right James? ;) Several of the ladies and I swapped dresses, jackets, shoes, and well...pretty much every item of clothing known to man. I even scored a fur vest!!

Justin came to pick up Josh's train stuff for their little guy, Nate. Sarah and Justin are awesome running friends and their little man is such a cutie! He loves trains and Josh has really grown out of them and is totally consumed by Legos. Nate probably doesn't even realize what he got yet, but he scored a ton of Geotrax stuff and lots of Thomas the Train stuff. Josh was so excited to know that there is another little boy ready to love his stuff the way he did. And to make room for the Legos he asked for from Santa :)

Julia snagged a stack of books for her nephew Hudson, Erin (interim director of CMN) took some LeapPad stuff for Children's Miracle Network and the kids in PICU. Erin also gave me a sugar scrub manicure because she is awesome and knows that I can't go to a salon to get one because of my risk of infection. (thanks EM!) Maggie was my surprise..I haven't seen her gorgeous face in WAY too long. She stayed late and drank good wine with me. So thankful!! There were a lot of really awesome items that found new homes and whatever was left at the end of the day, was picked up a week later by Ozanam and donated to those less fortunate.

I totally plan on doing this again since my goal in life is to have less 'stuff' and live simply. Any excuse to spend the day with awesome friends is good enough for me :)

Result: Operation Purge was a HUGE success!!

xoxo
Shelley

You down with WBC? (Yeah you know me) Who's down with ANC? (Yeah, this la-dy)

*WBC=white blood cell
White blood cells fight infection.  The white blood count (WBC) is part of a complete blood count (CBC) that is used to check your blood counts.  There are several types of white blood cells.
**ANC=Absolute Neutrophil Count

One measure of risk is the absolute neutrophil count (ANC).  The ANC is calculated by multiplying the total white blood count by the percent of neutrophils (also called segmented neutrophils, segs, polymorphoneucleated cells or PMNs, polys)

Ok so here it is folks...the long awaited treatment update. I have told this story so many times and updated it on Facebook so frequently that I forgot to blog about it!! I haven't slept a wink all night from the steroid I got at chemo yesterday so now is as good a time as any :)

Since it has been quite a while since treatment started and things have changed pretty dramatically from the original plan, I'm going to start from the beginning and timeline this treatment for you. I feel more and more forgetful from the chemo brain every day so with the help of my calendar and what memory I have left, I'm piecing this together. Please forgive any repetition and if you get bored... there's a better blog post on its way :)

The basic idea of chemotherapy is to rid the body of faster growing cancer cells. While doing this, the drug also has an effect on the faster growing normal cells in our bodies.  These include; the hair, the lining of our mouth, or the cells in the bone marrow that produce white blood cells (which help to fight infection), red blood cells (which carry oxygen through our blood), and platelets (which help to clot the blood and stop bleeding).  The chemotherapy is timed to allow the body's normal cells time to recover between treatments.


Starting on August 11 and ending on September 22, I got 4 rounds of AC (Adriamycin and Cytoxan) chemo, with a two week break in between. The typical side effects of AC: alopecia (you know I was bald, right??), decrease of white blood cells, red blood cells and platelets, mouth sores, nail changes, discolored urine, severe sunburn with sun exposure, decreased appetite, taste changes, changes in menstrual cycle, bladder irritation, nasal congestion. Like having cancer isn't bad enough, right?

Well, lucky for me, I experienced VERY few of these. Ok, so I lost my hair. I actually met a gal who referred me to a site for an ice cap that you can wear during chemo to freeze your hair follicles and save your hair. You all know how much I loved my hair, but to be totally honest, in retrospect, I needed to lose my hair. I think it was like a rite of passage. It empowered me to battle this disease with confidence and to realize that I am defined by so much more than my long crazy tresses. I'm sure I already knew that, but what a great reminder. I felt really amazing bald! :) (note: I intend to grow these locks out, but I'm going to have some fun on the way there!)

I never had mouth sores, my nails are healthy and strong. I refuse to discuss the color of my urine with you, but I'm sure it's fine. I went to Colorado in August with normal sunscreen and didn't get burned so I guess that one's out. I am the hungriest cancer patient alive...ask any of my chemo dates or my running buddies! They'll all tell you that I never stop eating. Lori would only come to one full treatment and swears she gained 5 lbs because I had so many goodies (I think she's exaggerating a tad!) :) I haven't gained more than a couple lbs through all of this though because I'm still running and eating super healthy.  My menstrual cycle wasn't your business before and is none of your business now so we're not going to talk about it :) I suppose my bladder is irritated...or maybe it's just me that's irritated since I have to pee so often! I drink water like I'm trying to drain Clinton Lake so it's not a surprise... Oh, I suppose I've had a bit of nasal congestion, but with a few neti pots, that was cured quickly (and no amoeba in my brain either!). So, I guess what I'm saying is that I made it through AC feeling pretty damn lucky!

So next up was 12 consecutive weeks of Taxol. The side effects were supposed to be much less, but since I didn't really experience any except the hair loss and chemo fog/chemo brain, I wasn't sure what to expect. The typical side effects are decrease of white blood cells, red blood cells and platelets, allergic-like reaction, numbness and/or tingling to fingers and toes, muscle aches, bone pain, mouth sores, hair loss, diarrhea

I did ok with WBCs (white blood cells) and the rest of my counts through most of AC until we got to the end. I was supposed to only have to wait 3 weeks to start the new chemo, Taxol, but I ended up having to wait 4 weeks instead. This was when the WBC/ANC monkey climbed on my back and I haven't been able to shake it yet. My friend Shelley2 (or Dr. Shelley) had taken the day off work to come with me to my first round of Taxol so it was really tough for me to tell her that my WBC's and ANC's (absolute neutrophil count) were too low for them to treat me. It was really the first roadblock I had encountered and it really did break my spirit...temporarily...until I met her for a drink that afternoon and took a deep breath, realizing that it was just ONE week out of 5 months and my body really needed it. My Dad was planning on flying in for my birthday the following week anyway so it really worked out for the best. I had to get 2 Neupagen shots to boost my counts on the two days prior to my first round on October 20. After weeks 2 and 3, my counts started to drop again so we changed the original plan of 12 consecutive weeks and decided to go 3 weeks on, 1 week off until the 12 rounds were completed. Chris was with me at the visit when I found that out and it really took the wind out of my sails. I was so thankful to have him there and that hug was one of the most necessary of my entire treatment. Don't get me wrong, they're all important, but that one got me back on track. It was with the realization that my WBC's and ANC's hate me that doc and I decided that short term disability from work was the best idea. Low counts really just mean that I have very little immune system and sitting in Dr. office lobbies during flu season is just downright stupid. I love my docs, NPs, nurses, and staff, but they didn't want to see me under those conditions either. (I miss you ALL!)

 I definitely experience some muscle and bone pain which is a complete pain in the ass when I'm trying to keep running. I took a pilates reformer class and some yoga to help and the acupuncture is helping too. Still no mouth sores and no diarrhea (you were curious, weren't you?). And hair loss? Well, my eyebrows and eyelashes are thinner but my hair is growing back!! Maybe not as quickly as it will when chemo is all over, but I've definitely got hair! And if one more person tells me that I looked better bald... well, I know already! But I've got to go through this awkward stage if I ever want to get my hair back...and I do :)

Ok, so where are we now? I am still carrying this damn monkey and it's getting heavy! Despite starting a regular acupuncture regimen (which has helped with curbing the neuropathy (tingling) in my fingers & toes and energy levels) and a test run with some herbs to boost my counts, the only thing that has gotten me back to treatment has been my monthly shot of Neulasta on the Friday after my 3rd consecutive week of chemo and then a week off. So this is what the Taxol treatment plan looks like:

Oct 20, 27, Nov 3- Taxol treatments
Nov 3- Dr. Sharma visit to update treatment plan
Nov 10-OFF treatment
Nove 17, 25, Dec 1-Taxol treatments
Dec 1-Dr Sharma visit
Dec 8-OFF treatment
Dec 15, 22,29-Taxol treatments
Dec 28-Dr Sharma visit
Jan 5-OFF treatment
Jan 12, 19, 26-Taxol treatments
Jan 26...DONE chemo!!!!!!!!!! :)

My Taxol treatments are short and my days are nothing like the old AC days. In fact yesterday, Rick and I went out for a nice lunch, drank some beer, and had an amazing pasole dinner with Chris and Adam. Jealous? Yeah, they're all pretty amazing and awesome. :) I've had the luxury of having incredible chemo dates throughout my entire treatment. I'm throwing a shout out to my Dad and Mom (who hit quite a few between them), my work partner Lori (who is SO supportive), Chris (who is the busiest man I know but has been around more than anyone), Adam (who has been my 'crew' and has recently been appointed my Life Coach :) We are also organizing a flash mob if you are interested.) My little sister Lauren (who wins the 'longest distance traveled for a chemo date'. Let's hear it for Fairfax, VT!!) <3, my good friend Amber (who moved back from Salt Lake City just to be my date...or because her job moved her back...), Julia (whose 9 month old nephew just underwent a successful (!) MAJOR cranial surgery in Dallas yet she still found time over the last few months to worry about me), my friend Erin (no offense to anyone else, but she easily wins 'best chemo date gift'. She made me a fleece blanket that is so AWESOME that I sleep with it every night and bring it to treatment every week), Kelly and Desiree for frequently showing up to give me girl time and support. Andrea for the goodies on my first visit, Erin M for driving my loopy ass around, and my BFF Rick for taking an entire day to sit with me at chemo right before Christmas, and for continuing to feed me nutrient rich foods including the ridiculous pasole! Dr Shelley for TRYING to be my date and even taking a day off work for it...wait til surgery Shell, I will NEED you then! My friends Margit and Bart (and baby Roosmarijn) for bringing me organic veggies from their farm in Eudora and welcoming me and the kidlets into their home for dinner on more than one occasion. My kids for making me laugh...Annika for making breakfast every morning now and Josh for kissing my head every day before school. I love them without limits!! EVERYONE for the cards, the gifts, the words of encouragement, your time. I feel so lucky, so loved. And if I missed you and you don't feel like you belong in the EVERYONE category, I've got two words for you...chemo brain. You know I love you :)

After this chemo business is over (just 4 treatments away!!), we're going to start talking boobs. So if you're one of those who has been following and paying close attention, waiting for some good boob talk, stay tuned! I've decided to get a second opinion from a different plastic surgeon but either way, I'll be under the knife in late February/early March. And yes, they'll be fake, and eventually they'll be fabulous :)  

Oh, and guess what!!! Next week, Kelly and I will be featured in an article in Ink magazine here in KC! Dec 28....look for it!

xoxo
Shelley

Our 'Modern Family'...Happy Spanksgiving!!

I'VE GOT ALL MY SISTERS AND ME

me, 'Karen', Lauren, Tori  

I used to crack a joke(that was probably only funny to me) that I have one 'real' sister and the others are imaginary. Funny! Right?! Well that couldn't be further from the truth. The reality is that I have 3 sisters who are all very real, all very different from each other. Over the years, we have evolved from a 23 year age gap to 4 adult women who love and respect each other very much. If you read my birthday blog, you know that I received the awesome birthday gift of a visit from my two younger sisters for Thanksgiving. Our eldest (and wisest, most beautiful, and intelligent) sister, Karen, lives in Hawaii and wasn't able to spend the holiday with us. We did find small ways to include her in our escapades and missed her...of course! 

So, one of the most amazing thing about my sisters is how differently we are all related. Silly statement, right? Maybe so, but it's true! You could say that we are a 'blended' family...our own version of a Modern Family, I guess. We are proof positive that amazing, loving parents and good co-parenting can result in happy healthy relationships all around. Although genetically we don't all 'share' the same parents, we all have awesome parents and we really do share them in so many ways :)  

Karen is my only 'full' biological sister. We share both the same (amazing) parents and all the same genes (except somehow she got the skinny ass and organization gene). We've been sisters since birth and will be sisters forever. We're very different but I think she is amazing and we love each other just the same :) I don't see her nearly often enough, but once this stupid cancer thing is over, I plan to see her much more. And it sure doesn't hurt that she lives in tropical paradise! :) 

Then there's Lauren, who became my sister (technically stepsister) when I was in college. For those of you trying to do the math, she is 10 years younger than me and that was a loooong time ago :) Lauren is adorable, sweet, thoughtful, intelligent, responsible and I absolutely adore her. She has grown from my kid stepsister to an incredible adult and great friend. We share ZERO genes, but somehow I have more in common with her than I do most people. She has a great appreciation for good healthy food and good craft beer, she loves to run (yay!) and I truly enjoy every minute I spend with her. She is also the mastermind behind the Blue Footed Boobie t-shirts! (see pic above) Sisterhood wasn't forced upon us...Dad and Mary let us come about it in our own way...but it was so natural and I love her :)  

Tori

And then last, but certainly not least, there's my 'baby' (half)sister Tori (Victoria Grace) who I've come to realize really isn't our baby sister anymore. I was 21 when she was born and she stole my heart the minute I saw her. Now, she has grown into a stunning, gorgeous young woman. I mean, look at her! She got the best genes from both sides obviously and her beauty isn't just skin deep. She is as beautiful inside as out :) I can't believe that next year, she is going to COLLEGE! I am excited to see the amazing things she accomplishes when she spreads her wings. Spending time with her as an adult is so weird for me but so much fun! It's hard to believe she's all grown up... :)

*If you've made it this far without needing to dry your eyes, congrats. I have not been so lucky. Through my cancer battle, my relationship with each of my sisters has been changed. I've always loved them, but now, I can't imagine life without them. I love you all and I'm so thankful for you :)

On a less emotional note (until I start writing about it-jeez!), we had an AMAZING action-packed few days and I sent Lauren and Tori back to NY/VT completely wiped out and exhausted :) We had so much fun that we had to create a new holiday to celebrate. It all started when they flew in late the night before Thanksgiving...

THANKSGIVING DAY

I thought the perfect way to kick off our holiday was of course to run the Ward Parkway Thanksgiving Day 5k with my sisters. Lauren and I are both pretty avid runners and since Tori is 17 and an athlete (although not a runner), we assumed she'd run circles around us. The girls bought me the greatest t-shirt in the airport on the way here so Tori and I wore matching shirts :) It was a chilly morning but sunny and really a beautiful day. We had a blast and although we surely didn't break any records, I can't think of a 5k that I've enjoyed more. Tori gave Lauren and I a nice little ego boost when we had to run backward to wait for her and practically drag her up the last hill. When we finished, she yelled 'never again!' but I'm pretty sure that she has already changed her mind... :) And I'm also pretty sure she'll never have a tall glass of milk before a race ever again!

Our adorable hosts :)

Lori, Laurie, Sherry

So after the race, we were invited to share a Thanksgiving meal with Sam and John and John's family visiting from Wisconsin. The food was fabulous, the company even better. Esther and Walt, John's 90-ish year old grandparents, were absolutely delightful and his parents were equally lovely. John smoked a turkey and it was ridiculously delicious aside a super healthy spread of quinoa stuffing, chipotle sweet potatoes, whipped cauliflower... really amazing food! I am so thankful to have such wonderful friends to welcome us into their home with their family on a holiday best spent with friends and family. You guys are the best! Thank you!! Love you!

After dinner, we picked up Adam and headed to the Country Club Plaza for the 82nd annual Plaza Lighting ceremony. Eric Stonestreet from Modern Family (how apropos) flipped the switch and we joined the crowd to celebrate. 

A pre-lighting drink on the patio 

Waiting to join the flash mob... hehe

Awesome fireworks!!

The masses

It was such a festive atmosphere and we shared lots of laughs...a night I will definitely remember. A perfect day to celebrate being thankful for the amazing people in my life.  I can honestly say that since my diagnosis in July, I have counted my blessings more than I have my entire life. I might have cancer right this moment, but I also have amazing family, amazing friends, the ability to enjoy a happy life otherwise and for this, I am truly grateful.

So...we picked up the kids on our way home from the Plaza and went straight to bed...

SPANKSGIVING


When I woke up the next day, it just began as 'Friday'...chemo day this week since Thursday was a holiday. Lauren and I headed to the treatment center (with coffee in hand since my appointment was at 8am -yawn) and left Tori and the kiddos sleeping. I can't even tell you how nice it was to have Lauren with me at my treatment this week. It was weird to be there over a holiday. Half the lights were off in the building and the labs were closed so my normal routine was all messed up. Either way, we settled in and within an hour of getting started, Adam surprised us with a half dozen pumpkin spice glazed donuts. (You're the BEST-yum!) Time flew by and before we knew it, chemo was done and we headed home to pick up Tori and the kids to meet Kelly for lunch. I am SO happy that they got to meet her since she is really such an important part of my life. The food was really good and I got to introduce Lauren to Boulevard beer...good times :)

Lunch at The Farmhouse

My adorable kidlets :)

After a little shopping on the Plaza, we decided to take in the Luminary Walk at the Overland Park Arboretum. I mean, why not?! It was such a gorgeous night and who doesn't love a good luminary walk?! We were in a bit of a hurry since we hadn't eaten dinner, but we enjoyed every minute of it regardless. We made a decision on our way that we'd celebrate Josh's birthday early when we got home so you can imagine that at least one of us was a little excited to get home :)    

Mom and kidlets

My hilarious sisters in their 'prom pose'-hehe

Just hanging out in chairs made just their size 

Annika and Aunt Tori by the campfire, caroling with fresh warm cider  

Aunt Lauren, me, Josh 

We all got to share our Christmas wishes with Santa...mine was HAIR!! :)

On our way home from the park, we stopped to pick up the fixin's for a traditional Thanksgiving dinner. Since we had already celebrated Thanksgiving, Tori decided to create a new holiday for us to celebrate. Any good birthday party comes with spankings and so was born our new tradition...Spanksgiving!!

Happy Spanksgiving!!!

After dinner, Josh got to open presents which ended up being a gift to all of us. The only thing on Josh's list? LEGOS!!

Happy 6th Birthday and Spanksgiving, Josh!

Pure happiness :)

Lauren and Annika amidst Lego-mania!

We Skyped Aunt Karen, Jake and Will in Hawaii so they could celebrate Spanksgiving too!

The rest of our time together was really just hanging out and having lunch at the Westside Local. 

Love <3

I'm still digesting the fact that they're gone even though it's been a week. I missed them before the visit and I miss them even more now. In the spirit of the holiday though, I'm going to choose to just be thankful that they were even able to come visit at all. Isn't there a saying 'Don't cry because it's over, smile because it happened"?? Well, that's exactly what I'm going to do. 

Happy belated Spanksgiving!

xoxo

Shelley