Sunday, July 31, 2011

And on the 4th day...

Last Wednesday was the last update and since then, I've had some pretty big stuff happen. Here it goes...

First, I have been working as much as possible for several reasons:

1. I love my job
2. It keeps my mind off cancer and on diabetes, which I do not have
3. I work with amazing people who I care about a great deal, both coworkers and customers
4. Eventually I will need the time off when I have gross drains in post-surgery, when I am at risk of vomiting all over everyone post-chemo and when I'm just plain tired, but right now, I am...dare I say healthy??
5. I was raised by amazing parents with strong work ethic and it's the only way I know
6. My company and the management have been completely awesome so far and I want to continue to earn their trust and respect
7. Laying by the pool thinking about having cancer got old in one day

So, I work. My boss, Kelly (not to be confused with cancer survivor badass Kelly. This Kelly is also a badass, but for completely different reasons :) ) has been great to me. My partners look out for me like no  other. Lori even tracked me down in the field one day to give me a hug and make me call my doctor for a prescription for my sinus infection. My whole team is so awesome-I am so thankful :)

But on Friday, I didn't work. I took the day to get tested. My oncologist ordered an MRI on my brain and a full body PET scan. He must know how much I love MRIs. Really, if you're thinking of a gift for my birthday, Christmas, whatev, a gift certificate for an MRI would be awesome... Uh, no.

So I went to St Luke's on the Plaza for an early morning MRI. The day before, some really peppy guy named Nick called me and told me to leave my IV in and walk to the next building for my PET immediately following the MRI even though I was on the schedule several hours later. As it turned out, it really made my day awesome. Thanks for working me in, Nick! Anyway, Matt came to keep me company during the PET and even got to hang out in the PET scan trailer (oh, yeah, a trailer. It's a classy operation). They injected me with a radioactive sugar solution and 40 minutes later, they did the scan. It lasted less than 15 minutes. Afterward, Nick was showing me pics of what a normal PET should look like and described that there would be a dark spot if there was an area of concern. He then pointed at the next picture and said 'Now see that dark spot around the mouth area, that's bad. Really bad.' What?!?!? I have a dark spot?! 'Uh, no. That's some other person...' Nick was just showing me what bad looked like. Psych! Jeez, Nick. Nearly gave me a heart attack! Matt got a good laugh that I thought I might have oral cancer. haha Matt. Really funny ;) My dear friend showed up spontaneously just to give me hugs following the PET too. She's amazing and I am so thankful to have mother hens in my life!!

Right after we finished eating brunch at Eggtc. (I had to fast for the tests so I was STARVING), Dr. Belt called with the results that the PET scan was completely clear. We are still waiting on the results of the brain MRI and hopefully will have those Monday. Do you think they'll be able to count how many brain cells I've killed since college? Just wondering... I just want all of these tests out of the way so we can focus on these boobs and get rid of them.

You know, when you find out that you do not have cancer all over your body (because I had subconsciously started to believe that I did), it's amazing how you can celebrate and forget that you actually do still have cancer. To celebrate, I did what anyone would do. I went to Coleen's Sweaty Ass night trail run in Olathe, of course! That girl puts on a good run. I ran 2 loops of a 3 mile course at 8pm with Kelly and the rest of the awesome runners out for some night running. Hey, why wouldn't I? It was awesome. Thanks Coleen!!


I spent the weekend running errands to get prepared for the tornado that's about to hit my life. My friend Rick, his girlfriend and his son came to visit and bring me KFC (Kancer Fighting Chow) which consisted of the ingredients for the most ridiculous salad. Kale, parsley, barley, lentils, corn, cherry tomatoes, fresh peaches and a crazy ridiculous vinaigrette.
I even shared it with Kelly. She might be cancer free, but I'll do anything I can to help her keep it that way! Plus, it was too good to not share :)  And today, I took some time to get SMURF'ed with my kids. I spent the whole weekend dancing like the whole world is watching. Now I'm really tired. Peace out, blog followers.

BRCA and MRI test results should come tomorrow. Stay tuned!

xoxo Shelley

Dance like the whole world is watching...

I know that's not the way the quote goes. I think it's "You've gotta dance like there's nobody watching..." but when have I ever done something the way someone else suggests it should be done? We all know that it's rare. And really, who cares if no one is watching or if the whole world has you under a magnifying glass? Just dance!! I've been thinking about this a lot lately as I cruise through these first few weeks since diagnosis. 


I have gotten a lot of comments on how well I have handled 'the news' and how my attitude will help me through this. I believe in the power of positive thinking, but I really think this is on a whole different level. I had a thought the other night that I wonder if I've been so optimistic through this process just to reassure my friends and family that I will be ok... And I realized that it definitely is part of it all. When I got the news, I immediately knew that the way I react is the lead my family and friends will follow. Sometimes when I'm home at night alone, I wonder if I'm on the brink of completely losing it any minute. And then I realize that it's not the case. Sure, I do feel responsible for making sure my kids handle this well and that my family and friends bear as little burden as possible.  Really, though, I just feel like this is just a blip on the screen of life and a hurdle to jump and move on down the road. And I intend to move through it with confidence and enthusiasm. If I know you are all watching, it gives me plenty of motivation to keep this attitude when I feel like crap. I plan on dancing like the whole world is watching. 


Yes, I blog for me, but really, I blog for you too. I want one more woman to get a mammogram...I want one more man to make his girlfriend/wife/mother/daughter go get that stupid lump tested...I want one more newly diagnosed cancer patient to see the world as I do and dance with me through the ugliness that cancer brings.


Speaking of what cancer brings, I'll post separately about my tests/results/plan...Coming soon to a blog near you!


xoxo Shelley 

Wednesday, July 27, 2011

Oncology 101

We've got a plan!!!! Ok, so it's a tentative one, but I'm going to tell this like I see it. I am, and always will be, a naive optimist, so please keep that in mind :)

Yesterday, I met with Dr. Belt, the oncologist, with Kelly by my side. Needless to say (and no need for anyone to take offense), oncologists are an interesting breed. Unique, let's just say. Anyway, he was very direct and I left there with a plan. That's what I went there for, right? The information flew at us pretty fast so Kelly and I were having a rapid fire Q & A session basically. He did the exam and told me that I look very healthy otherwise (why, thank you :) ) and moved directly into the plan. There is probably a lot of information that I'm missing here, but basically, he said 'so you're having a bi-lateral mastectomy, right?' Well, prior to walking in, I was leaning that way, but my surgeon told me that I have a few different options. So of course I replied 'Well, I didn't know that I had decided that.' He really didn't skip a beat and we asked him about rates of recurrence. His whole point in suggesting the double mastectomy is that I have history. Whether or not that BRCA1 or BRCA2 comes back positive, there is still history in my family. It's not a deep history, but at this point, why take chances? There may be some other gene mutation that we don't know about yet that causes me to be predisposed to breast cancer. As long as there is remaining breast tissue, the chance is there. Kelly and Dr. Shelley both armed me with the simplest, but necessary, question that I pulled out here... 'If I were your daughter...' I didn't even need to finish the sentence before he finished with 'You'd have a bi-lateral mastectomy.'  Dr. Belt has been in the biz for a VERY long time. He has seen a lot and had tons of experience. That's really all I needed to hear.

So, on August 24th, I have two plastic surgeons lined up (I still have yet to meet them and won't for a couple weeks. I'll decide then.)  with my oncology surgeon, Dr Shook to get rid of these and get some new ones. These are trying to kill me...they've just gotta go. :)

I chose August 24th for 2 very good reasons. First, with everyone on vacation (see? I told you! Bad time to get cancer!), the earliest I could do it is a week earlier. Well, that just so happens to be the day my son starts kindergarten. I'll be damned if I am going to miss this milestone in Josh's life. No way. AND, my friend Brooks Williams and his pacer (my dear friend) Andy Henshaw are planning on my mad crewing skills to get Brooks a top 5 finish at the Leadville 100 trail race. I am not going to miss that unless my life depends on it. And at this point, it does not :)

My hope is that I will start chemo treatments on Sept 2 and will have chemo every 2 weeks for 8 weeks. And there you have it. A plan :)

I am having an MRI and full body PET scan on Friday of this week just to make sure that this stupid cancer isn't anywhere else. I'll keep you all posted!

I slept better last night than I have in a while (ok, the melatonin that Desiree gave me probably didn't hurt) and I feel good today. I am fully aware that there are still some holes in my plan and that it won't be easy, but I have a plan and that feels good.

The beauty in you is your spirit...

Every time I sit down to start, I have a million things I'd like to share. Today as I sat down, with a nagging head cold (allergies, sinus infection, whatev) and a cup of tea, the tag on my tea struck my eye. "The beauty in you is your spirit." That is what I'd like to share...

I have spirit, yes I do, I have spirit, how 'bout you?! Sounds like a cheerleader's chant to me. I wasn't a cheerleader...in fact, I didn't really like many cheerleaders (it's true!) but for a week, I've had the most talented cheerleaders on my side and I am SO SO thankful. My team captain, Kelly, (who actually WAS a cheerleader and I still love her) has not skipped a beat, stepping in and helping me take control of this situation. Being diagnosed with cancer is scary...but a whole lot less scary when you've got someone who makes time to attend the critical appointments and ask all the right questions. More importantly, an absolutely amazing woman who handled her breast cancer diagnosis and defeat with grace and agility. She is the true essence of 'spirit'. There isn't a person I know who wouldn't agree with me. I love you Kelly!!  There are the rest of the Jaybirds (you'll learn about them soon enough) who have each had their own role in cheerleading this week, whether it's amazing hugs and garden fresh treats (Sam-'The Hugger'), heartfelt emotions and sentiments sent from afar (Jenn-and Ava!), or just good ole girl talk (Desiree), I love them all and feel so fortunate to have this squad. My friend Julia whose support is understood and strong...Dr. Shelley (no, not my alter ego who has done a lot of research...I really have a friend of the same name who is so much smarter) who helps me break down the info and checks in almost daily. My dear, dear friend Debbie who epitomizes 'spirit' and has dragged my tired body out on the trails twice this week. We talk, we run, we talk, we run...my therapy :) Day 1, Day 2.... so thankful for YOU!

My running friends, the boys and girls, and Coleen's vegan peanut butter chocolate chip cupcakes...the people who have made their presence known in other ways that affect me so deeply. The thoughts, the prayers, the well wishes... I love cheerleaders!! My neighbors who have already helped me in more ways than one. And of course, my family, who unwaveringly supports me in so many ways. My heart is so full so THANK YOU cheerleaders!!

No worries, the oncology report is on its way!!

Sunday, July 24, 2011

Booby video!!!


The Blue Footed Booby is a marine bird found primarily in the Galapagos Islands. They do this ridiculous mating dance to show off their blue feet. Apparently there are also red footed boobies and god forbid they mate with the wrong color booby!! I now know way more about blue footed boobies than I care to, simply to entertain my two amazing little people who are scared to death that their Mommy has cancer. This YouTube video is our go-to when we just need to laugh about it.

In the aftermath of 'the talk', the kids have had lots of questions and comments about cancer. Annika really wanted to understand the MRI. So, I explained to her that they injected me with a contrast dye in an IV so my boobies would be a different color in the pictures. It would help them figure out if there was any more cancer. Of course she wanted to know what color it was (you can see where I'm headed, right?) but since the dye in the IV was clear as far as I could tell, I just picked her favorite color. Blue. My boobies were blue in the MRI. And there you have it. We googled blue boobies, we got this weird bird and we all love them now :) Hey, whatever it takes!

There have also been some random comments, mostly in the car, from both kids. As we were driving, Josh said "Mom, I think I know how you got cancer" Oh, really? "Yeah, something in your body just didn't grow right." Sounds fairly accurate. Hmm... On a separate day, also in the car, Annika yelled "Mom!! I think I have cancer too!!" What?? Why would you say that? "My hair is falling out!!!" (as I look in the rearview mirror, I see that she just pulled out her ponytail holder) Annika, cancer doesn't make your hair fall out, it's just the medicine, which neither of us is taking right now. "oh yeah, well it was just a couple pieces anyway" :) The bigger, tougher questions are those that the kids are asking Daddy and Lauren. Poor Lauren always gets the tough ones, but she does such a great job handling them! On Saturday night, the kids spent the night at Dad's so I could spend some time with friends. Annika asked a lot of questions about whether or not people die from cancer and whether or not I'm going to die. She was very worried about what she would do if I die. Lauren assured her that my doctors and I were working very hard to make sure that doesn't happen and that she'll always have a Mommy. Another reason I'm so thankful that Lauren is in their little lives :)

I was anxiously awaiting the results of the aforementioned MRI and the doc who reads them (you know this part) was on vacation. The doc filling in for her normally reads at a different facility and the machines and results vary. On Friday, she gave me some preliminary results but assured me that I really want the doc who is familiar with that machine to give me the report and the concrete results. However, she did say that as far as she can tell, there is nothing besides the known cancer. That's good news...I think. I'll wait until tomorrow when the 'real' doc gives me those results. I meet with the oncologist on Tuesday and CANNOT wait to get a plan in place. So...that's it on the cancer front!

We had a fun weekend...a really NORMAL weekend. I actually went back to work on Friday, stopped for a quick drink with friends on the way home. The kids and I went to a movie. Saturday, Julia invited us to a pool party (thanks, doll, it was SO fun!!) and while the kids were at dad's, I had a great night out with amazing friends. Sam and Kelly take such good care of me and I even got goodies from the Kevern garden! (have you ever had Mexican sour gherkins?? They're ridiculous!) We went to Laurie and Nick's going away party (gonna miss you guys!) and collected hugs from a whole house full of awesome people. Coleen even came through with the vegan peanut butter chocolate chip cupcakes she promised :)  Debbie promised me that she'll make sure to keep me running as much as possible. It was a feel-good day for sure. Today, we went rock climbing and I got a nice workout in at the gym. We bought Josh a baby leopard gecko (named Gingko-he's so cute!) to replace his anole who died a few months ago. Yeah, it was a very normal, but fun weekend. In fact, a few times I even forgot that I have cancer. I know that once treatment starts, I won't have the energy to do everything I normally do, but I'm sure as hell going to try. I owe it to my kids, these amazing little people, to continue to enjoy our lives every single day. I refuse to change our lifestyle and stop having fun. Cancer or no cancer, hair or no hair, boobs or no boobs, I'm going to enjoy it. Now don't you want to watch the booby video again??  

Thursday, July 21, 2011

Saying Booooobiiiieeees is so fun!!

The part of this that I've had the most fear about so far involves the two little people in my life who mean the world to me...the kidlets, the kiddos, Annika and Josh. I honestly think that our involvement in Kelly's life over the past 6 months has prepared us for this moment in ways I could have never imagined.

When Kelly was diagnosed and we were delivering soup and just stopping by to say hello to her (less than 6 months ago), it opened a barrage of questions that I wasn't quite expecting. Annika was concerned that cancer is contagious and was scared to death of being around someone who was losing their hair. As they got to know Kelly a bit, they got significantly more comfortable and began asking about her a lot. Annika always asked to see pictures so she could see how she looked bald and especially when her hair started growing back in recently. She was always pleasantly surprised at how beautiful Kelly looked in the pictures. I had to photoshop them quite a bit to get there but you have to do what you have to do.  Kidding! ALL of my friends are super HOT with or without hair :) Anyway, Annika started becoming slightly enamored with Kelly and her new 'do, as recently as last week. I had no idea the role that would play this week.

I had a lot of anxiety today, knowing that it was THE DAY that I had to tell the kids. Here's how it played out...

I had an appointment to get my IUD switched out this morning since I had Mirena and can't have the hormones during chemo. My NP, Coleen O'Donnell is AMAZING and made room for me in her schedule. She also gave me the back line to the office, cell phone numbers and personal numbers of people involved in my treatment, giving me such a feeling of confidence that these people see me as a person, not a patient. She is taking my situation very personally and has assured me that I am getting the best care possible. So the procedure was quick, the cramping severe, but I was on my merry way in no time. In fact, it happened so fast that I wasn't so sure what to do with myself until my MRI. So I shopped a little (duh) and checked out the new Trader Joe's. That just made me happy :)

Then I got to have an MRI-yay!! The MRI is to determine if there are any additional abnormalities to biopsy when they go in. Bottom line, MRI's suck. I had a contrast MRI so I was hooked to an IV so they could put the contrast dye in the breast tissue. I was in that sucker for 45 minutes! The sheet on the bed smelled like a wet dog and all I could think of was how dogs have been really attached to me recently....for 45 whole minutes...that's what I thought about. Seriously. Not that I have cancer, or how to tell my kids, but dogs. I'm losing it :)

When all was said and done, I asked how quickly it could be read. I was informed that the normal radiologist was on vacation. Note to all of you: If you decide to get cancer, please do not do it during the summer months when EVERYONE is on vacation! I expressed my concern, told them Monday is not acceptable and I am waiting, wishing that the back-up radiologist lights a fire under it... I'll probably be calling again tomorrow :) They did send me home with (stupid) books for kids to help them with the news.

That was the easy part of my day.

I picked Josh up at preschool and spent a few minutes telling his director (who has become a close, amazing friend) the news before I went in to get him. I asked her to please just keep an eye on him moving forward. The pickup for both kids was rather uneventful. We made plans to go out for sushi after we dropped off our stuff at the house. I knew I had a tight window and I had to make my move when we got home. I told the kids that I had something I wanted to talk to them about. They both hesitantly joined me on the couch and I just laid it all out there.

How could I underestimate these amazing little people? Annika asked poignant questions and Josh simply asked if I needed more hugs. That's who I am raising and I couldn't be more pleased about it.
Annika was very concerned because people always call her 'mini-me'. She pointedly asked 'Will I have cancer too when I grow up, Mom? You know, I AM your mini-me...' Shit! Really????? I promised myself that I WOULD NOT CRY! I didn't. I choked it back and simply answered 'I sure hope not sweetie'. Last night I read a stat that if I test BRCA positive, there is a 50% chance she will get it...FIFTY PERCENT?! That is bullshit. Not my kid. Although I'm guessing my Mom and Dad are saying that too right now... Please cross fingers that the stupid test comes back negative.

Anyway, we talked a lot about the hair...and boobies. They think it is so great that they are now allowed to say that word when we talk about cancer. ONLY when we talk about cancer. It makes it fun, right? And since my Mommy and their Dad's mommy are breast cancer survivors, they wanted to know what their boobies look like. So we giggled that Nana and Grandma have old lady boobies...heehee (Sorry Mom and Ann :) We needed the laugh) My favorite part of our conversation was when i asked them who they thought said they'd shave their head with me. They shrugged and when I said 'Gramps', Josh nearly peed his pants. Ger has been bald for...EVER :) In fact, I think I have a pretty good idea what I'll look like bald now... :) Josh was still giggling about it when he went to bed.

We went out for sushi, ice cream and came home to watch a movie. As most of you who see me live my life know, that's pretty normal for us. I sang them both to sleep, tucked them in and followed our routine as normal. Sigh. That wasn't so tough :)

I know there are more conversations and questions to come, but our communication as a family tonight was priceless.

As many of you know, Steve and I have been divorced for 4 years. I call him cp (coparent) when referring to him with others because I think it just sounds nicer than 'ex-husband'.  He lives with his wonderful girlfriend, Lauren. Not to be confused with my sister, Lauren, who just married Mike a few weeks ago.... (I'll be sure to post a 'cast list' in the near future) Anyway, we are amazing co-parents. I hate to brag, but we are really awesome as a co-parenting family. I am so thankful that Steve and Lauren have really been fantastic support even over just the past week in helping with the kids and asking about my treatment. We have communicated about how we'll handle the discussions and they have both reassured me that they will step in whenever it is necessary. What a HUGE relief to know that it is not a conflicted situation and that we are truly acting as a supportive loving, albeit dysfunctional, family. Our children are so lucky :) And honestly, so am I.

That's all for tonight, folks. Please stay tuned for the next edition which will hopefully come with some answers and a plan for action!

xoxo Shelley

Wednesday, July 20, 2011

Let's see how good I am at this...

So, here we go...my very first blog post! Unfortunately for all of the followers that I do not have yet, I am exhausted, mentally and physically, and have no energy to be witty, funny, or to even attempt to insert pictures or links. And if you don't love emoticons, you should probably just stop reading my blog before you start because I love them and intend to use them...a lot :)

I think to get the ball rolling, I'll give you a quick test:  

1. Did I decide to start a blog to:
      a. let everyone know that I'm pregnant...with octuplets!
      b. keep you all up to date on my barefoot excursion through Siberia
      c. share my training plan for the 1000 mile run I plan to do next month
      d. break the news that I have breast cancer and keep everyone updated on the details

d? d you say? Yeah, sorry... there you have it. I. Have. Cancer.

And thank goodness that I do! My wonderful friend Kelly recently kicked cancer's ass and is now cancer free. We totally need someone in our circle of friends who can throw the cancer card when it's needed!! All joking aside (for just a brief moment), let's get to the nuts and bolts. I have told the story too many times already and I was just diagnosed on Monday. I will catch up on the diagnosis later when I'm not so tired, but what everyone wants to know is 'how did the appointment go today?' and 'what's next?'

I met with my surgeon, Dr. John Shook, today. Kelly came along to help me decipher what he was telling me and to be my rock. (I really think she just wanted to go shoe shopping and have drinks, so we did that too) :) Anyway, Dr Shook and his NP, Karen, ran me through the results of the path report and made some appointments for the upcoming week.  The important part of the results of the path report are that I have invasive ductal carcinoma and I am triple negative. The invasive ductal is the most common type of breast cancer. I've seen stats that say that nearly 80% of all breast cancers are this type. The lump that they removed last week was 1.3cm so this makes it a stage 1 tumor. (oh yeah, that's the tumor that I've been convincing you all was benign. Yup, same one) We don't yet know if it's in the lymph nodes or has metastasized. The path report also says that 'the tumor has the histologic features of those seen in BRCA1 and BRCA2 tumors'. I can't make this shit up, people. Just google it. Ok fine, I did it for you...

"A woman who tests positive for a BRCA mutation has an increased lifetime risk for breast and ovarian cancer and certain other cancers compared to women in the general population. "  


 So basically I've decided that if I am positive, I'm getting a bi-lateral mastectomy and a hysterectomy. Done. But we still don't have answers so cool your heels and don't go getting weepy on me. Those test results won't be back for 10 business days.

I've already gone all 'tangential' on you, haven't I? You're all hanging on my every word just waiting to hear what 'triple negative' means, right?!  I wish I had better news. It's not a good thing. You would surely think that as far as test results go, negative would be a good thing, right? Nope. Not in this case. I cut and pasted this to put words in my mouth:

Triple Negative: Tumors in young women often lack all three receptors. In other words, they test ER-, PR- and HER2/neu-, making them “triple negative.” Unfortunately, this eliminates some effective treatment options and creates one of the unique challenges young women with breast cancer face. Triple-negative breast cancer can be more aggressive and more likely to recur.
If your cancer cells test triple negative, your doctor knows to turn to other treatment options. Just as they have for countless other young women, options exist to help fight your cancer. Chemotherapy is most often the treatment approach for triple-negative cancers. Recent research has focused on the use of PARP (Poly ASP ribose polymerase) inhibitors in the treatment of triple-negative breast cancer. Many other treatments now in clinical trials may begin to offer additional options. 

I have reached my max on characters (or I'm just so ridiculously tired that I need to go to bed) so here's the long and short...

Tomorrow I have an MRI which I should get results on by Friday. Next Tuesday I meet with my medical oncologist, Dr. Belt, who will talk about and set up my chemo and the damn BRCA test results should be back before I'm 40...or in a couple weeks. I will update this as much as I can.

I love you all and am SOOOoo SO thankful that I seriously have the most amazing family, friends and coworkers (also friends :) ) that anyone could ask for. I would start naming names, but you all know who you are!!! Please know that I am happy and positive and feel stronger than ever with you all on my team. In the words of the awesome t-shirt Kelly wore in the Boston marathon and passed on to me: Hey Cancer, you picked the wrong bitch!