It's Not You, It's Me...Oh Wait, No, It's Definitely YOU!

Dear Tissue Expanders,

We have been together a while now, since November 15, 2013 to be exact, but our time together is coming to an end. On Thursday, we are splitting up, hopefully for good. I could take it easy on you and say "it's not you...it's me", but I fear that just isn't true and by lying to you I would be doing you a disservice. On the surface, to the unknowing observer, I'm sure things always seemed okay, good even. I can admit that you have given me shape and helped me to keep up appearances. I can even concede that you have done a good job of preparing me for the future and the better things to come, but appearances aren't always what they seem. I have gotten to know you pretty well in the past nine months and let's face it, although I am generally an easy going girl you've been down right inflexible, some might even say rigid and a tad bit bossy! I mean, who doesn't ALLOW someone to lay on their stomach for crying out loud?! And don't even get me STARTED on the fact that my boys no longer have a soft place to lay on my chest or that I could pretty much knock someone flat with a simple hug! You've hurt me at times, you've made me feel as though I am wearing some sort of medieval "iron bra" torture device, you've made it difficult for me to sleep comfortably and an accidental brush of my hand is a constant reminder of your "hard" attitude, so I just think it's really time for us to part ways. Even with all of the inflexibility, the bossiness and the hurt...it's still difficult to say goodbye...change is hard, and you are what I know, you have become my "normal" and lets' be honest, the process of getting rid of you is no walk in the park. Still, it's time to move on, to find a better fit for me, to find someone more flexible who will allow me to feel a bit more like myself. I do thank you for what you have done to prepare me and for helping me to at least LOOK "normal", but looks aren't everything and I am moving on.

Sincerely,

Longing for Squishies

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Just in case anyone is wondering, my oncology appointments have been deliciously BORING {let's pray that they stay that way!!}. I finished Herceptin a couple of weeks ago and I am continuing with Zoladex and Tamoxifen.

For those of you who want to know where to direct prayers/ energy/ chants/ whatever, here you go! THANKS FRIENDS!

1. That the exchange to implants {read about the process here} goes as smoothly as possible, that everything looks healthy and that there are NO SURPRISES! 
   
2.  That Dr. B and her staff are well rested, well fed and have steady hands and minds.
3. That going under anesthesia and coming out of anesthesia goes smoothly.
4. That my radiated skin and tissue has held up well so that proper healing can take place after the exchange.
5. That Matt, my boys, my parents, Matt's parents and the rest of my family can have calm hearts and minds during this surgery.
6. That I can remain Dr. K's most boring and completely uninteresting {at least medically!} patient. 

A Lot of Life

It's been almost a year since I began this blog and just over a year from when I heard "the words". I still think about cancer every single day, but I no longer wake up every morning in a panic feeling like I am going to throw up. I still worry about having the pleasure of seeing my boys grow up and about growing old with my husband, but now I try to remember that NO ONE knows what their future holds, it's just most people my age haven't yet had to look something so scary right in the face. A lot of life has happened in the past year. Many things have changed. I see WAAAAAAY more doctors and have WAAAAAAY more appointments than I ever have before {This is the FIRST time I have gone 3 weeks without seeing a doctor in over a year!!!}, I now have a self proclaimed PhD in breast cancer research and treatment {I mean, I've always been into science, but this it just nuts!}, I have acquired a whole separate friend group full of other young ladies who have heard "the words", and I am ENORMOUSLY and acutely aware of the fragility of life which has led to some interesting positive changes {such making most Fridays "family moving night", trying to take more little trips, starting Courage Kits of Kansas City and apparently trying to start my own homestead by raising chickens and joining a farm share!!} but even more things seem to  have stayed blissfully the same. I still have the most supporting and loving family, I still have the best friends in pretty much the entire world, I still enjoy running and playing and hiking and getting dirty and being outside, I still go barefoot almost all the time {and according to my husband I have "hobo feet" ~ which reminds me, I need a pedicure}, I still get annoyed with my the love of my life when he doesn't remember something I have told him {more than once!!} and exasperated with my sweet boys when they REFUSE to use the potty and continuously talk about "poop" at the dinner table, I still HATE putting the laundry away {in fact, I have several baskets full of clean laundry around the house right now!} and I still love cooking for my family and eating outside on our deck, I'm still me. I was afraid after I heard "the words" that some of what makes me ME would go away, but I am ever thankful that it hasn't. I'm still here, just maybe a little less happily ignorant than I was before.

Since I wrote last, I have had one more 3-month follow up with Dr. K. We spent the majority of the appointment laughing at a video from Late Night Staring Jimmy Fallon {waiting for it to load really} and a few minutes talking about the side effects of ovarian suppression and tamoxifen {hot flashes, joint pain, feeling like I am 100 when I wake up!}, scheduling my LAST herceptin infusion {Yay! but also, SCARY!}, discussing any new symptoms or complaints, of which I am grateful there are currently none, and of course, giving my boobies a good once over. My hope is that I stay an intensely boring patient for Dr. K. That we can always spend our appointments chit chatting about late night TV and the fact that we appear to be wearing very similar shirts and that there is no reason to discuss anything more serious, ever. So, if you want to join me, that's my prayer, staying boring to Dr. K ~ so boring that he yawns when he sees me. :~)

Also since we last "talked" Courage Kits of Kansas City has really taken off! We had a bag stuffing party and are making our first grand delivery to the KU Cancer Center tomorrow morning {after I get herceptin}. This is super exciting and not only because it means we will get our basement back {it's currently FILLED with bags!} but because I KNOW first hand the difference these kits are going to make to so many women. I have been told that there are 7 or 8 new breast cancer patients A WEEK at the cancer center, which is just staggering. So, friends, THANK YOU for supporting Courage Kits, it really fills me up. I'm going to leave you today with photos from our bag stuffing party and I will post again soon after they are delivered tomorrow. Again, thank you for you love and support over the past year! XO

I'm sorry the lighting is AWFUL!!

And Then There Were Chickens...

How did I let March go by without even a snippet of an update? Oh yeah, it's because we have been GETTING BUSY LIVING, which is exactly what we should all be doing, right? But before I jump on the treadmill {running has been linked with lower chance of cancer recurrence ~ and hey, stress relief!} I do want to go over some of the highlights with you.

• I had my first 3-month post chemo follow up visit with the Good Doctor. I was really nervous before this appointment, because of not knowing what to expect, but nothing really exciting occurred. We discussed what the follow-up guidelines are for breast cancer, you can read about them here if you feel so inclined. We discussed whether or not I should look into clinical trials {there are some exciting vaccine trials out there and I wanted his opinion} - he said I could if I wanted, but that I was already doing/ had done everything that was tried and true {chemo, surgery, radiation, ovarian suppression, and tamoxifen}. Then he felt up my boobies and sent me on my way to get my herceptin. Just to clarify, because I have been asked this question several times, I get herceptin every 3 weeks for an entire year. This is standard of care for someone who had a slightly positive HER2 tumor. This DOES NOT mean that they didn't get the cancer out at surgery ~ but because there is always the chance of rogue cells floating around, we attack {hopefully nothing} with the herceptin. Most everyone who has had this kind of tumor goes on to do a year of herceptin. I am happy to be getting the herceptin, even if it is mildly annoying to be back in the "spa chair" for a couple of hours every 3 weeks.  

Reading over the ASCO Guidelines while in the ol' herceptin chair.

• On Thursday, March 6th, I completed radiation therapy. Funny story, I actually THOUGHT I was done the previous Monday ~ I brought them donuts to celebrate and everything ~ turns out I had 3 more treatments left, DOH! Soooooo, when the day finally came, I brought donuts AGAIN, with the caveat that if they told me I wasn't done I was just going to assume it was for the donuts and they weren't getting anymore. ;~) My skin held up well. It got pretty red and then VERY tan and I had a small area that looked like a cigarette burn or something, but now it's basically back to normal. I have my rads follow-up on Thursday, so I am hoping they tell me I am good to go back to normal activities {like swimming b/c I would really like to swim!}.

Me, my radiation diploma and two of my radiation techs.

• My hair is growing back nicely {brows and lashes included}. I had a major freak out due to the amount of grey that was coming in, so thankfully my sister-in-law's mama colored it for me. You know, so I could be "Brunette to Bald and BACK and hopefully never ever bald again PLEASE!".

Me and my faux hawk ~5-months post finishing chemo

• Here's one I am REALLY excited about! Upon finishing radiation, I decided it was time to start giving back by helping other women who are caught in this cancer mess. So I went on Facebook with just a tiny mustard seed of an idea, to fill care packages for women who have been diagnosed with cancer and are undergoing treatment, and WOW the response was amazing. My friends and family {and some strangers!} are so darn cool. If you would like to read more about Courage Kits of Kansas City or if you would like to donate or help in any way, please click the link below. {I will try to figure out how to add a permanent button over on the side}

•  And finally, the title is going to make sense. WE NOW HAVE CHICKENS! Our city recently revisited it's poultry ordinance and we are now allowed to keep chickens within city limits. We have been hoping this day would come for a while. I am so excited to teach the boys about caring for animals and about where some of our food comes from! We have started on the hen house, which is quite the adventure already considering we are not carpenters, but we remain hopeful that it will be completed before the girls need to move in. :~) Meet Agnes, Elsa, Rosie, and Bertie. Love. edited: I tried to embed a video, it would not work, so for now a photo.

So, I guess that's it for now. Hopefully things stay "medically boring" around here and we can continue living and ENJOYING this life we have been given. Hopefully, in the future, my posts will contain a lot more "charity and chickens" and a lot less cancer. Love to all friends. XO

A Radioactive Update

I haven't updated on my treatment in a while, so I thought I would just give you a quick little summary of what is going on!

I am currently in the midst of radiation treatment, actually, I am slated to FINISH radiation on Monday! I will have completed 25 radiation treatments to my breast, the lymph nodes under my breast bone, the lymph nodes above my collar bone and my axilla. Sometimes, people in similar situations go on to get "boosts" of extra radiation to the tumor bed and scar, however, the area where my tumor bed was is actually not located anywhere near my scar and I had good margins after surgery, so the doctor would like to stop with the 25 "regular" treatments. This makes me a bit nervous since everyone I know seems to have gotten the boosts, BUT he is comfortable with this plan and does not want to over-radiate the area unnecessarily. Hopefully this will be the last of my "active" cancer treatments, EVER! So far, I have a very mild amount of redness and my skin feels a little bit tight, but it's not bad at all. I have been using pure aloe vera gel and Aquaphor in order to keep my skin nice and protected and it seems to be working well for me.

In addition to radiation, I am also getting Herceptin every 3 weeks for an entire year. It has been shown to benefit people who are "low expressing" for HER2, so I am grateful to be getting this drug even though I don't REALLY qualify for it. Herceptin is infused like chemotherapy through my port, and I guess, TECHNICALLY it is chemotherapy, but it is what is known as a "monoclonal antibody", which means it only really looks for and attacks those cells that have the HER2 receptors. In other words, it doesn't attack healthy cells and make me feel crappy like chemo and it doesn't make me lose my hair {which is growing in pretty well BTW}. The only real downside of Herceptin is that it is known to be cardio toxic, so I do have to have cardiac echos done every few months to make sure the ol' ticker is still functioning.

As you may remember, my tumor was HIGHLY hormone positive, so we are also taking measures to ensure that any straggler cells {of which we hope and pray there are none} are deprived of the estrogen which could possibly fuel them. So, I am getting Zoladex injections every 3 months in order to shut down ovarian function, which basically means I was thrown into menopause and get to experience all of the fun that comes with that. Still, so far, it's not too bad ~ minor warm flashes occasionally and just feeling a bit "older" really. But, maybe I was just used to it since chemo had already pretty much shut things down. Along with the Zoladex injections, I am also taking Tamoxifen, which binds to the estrogen receptors on breast cells in order to block them from getting the estrogen they need for fuel. Again, so far Tamoxifen has not been bad and I am IMMENSELY thankful for this wonderful drug, which I will likely be on for at least 10 years. I hope Tamoxifen remains my friend for a long, long time.

Along with all of the conventional treatments, I am also trying to keep my body healthy by running {although, the boys and I were sick for 2 weeks, so that was shot to craps for a while!} and taking my vitamin D and fish oil, all of which have been linked to lowered recurrence rates and fish oil has the added benefit of helping with the joint pain that can occur as a result of all the anti-hormonal treatments.

On Friday, I have my first of MANY 3-month follow-up appointments with Dr. K {my medical oncologist}. I am nervous about this appointment for a few reasons. One, because I still have a bad taste in my mouth from our last meeting {the one where he said he "wasn't happy" but really was}, two, because I have never had one of these appointments and I don't know what to expect, and three, because blood work always makes me nervous, especially because I hope the Tamoxifen and Zoladex haven't had a negative impact on anything.

That's about it. Just plugging along here, trying to remember to GET BUSY LIVING without succumbing to the constant fear of recurrence. It's a balancing act, trying to remain vigilant about health ~ but also trying not to allow worries of possibly futures consume my every thought.

With that, I am going to get on the treadmill and watch some Gilmore Girls DVDs, and then sip some green tea. :~)

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If you are the praying, hoping, chanting, well wishing, or light giving type, here is where you can direct some love:

1. That the cancer is gone and will NEVER EVER RETURN! {of course}
2. That my skin/ tissues continue to hold up well against the assault of radiation while it does it's job of reducing risk of local recurrence.
3. That my blood work is awesome on Friday.
4. That my appointment on Friday can leave us feeling hopeful and excited for the future.
5. That we ALL remember to GET BUSY LIVING!

Thanks friends! XO

On a Cancer Free Day

This entry has been floating around in my head for a while and a texted conversation with a friend brought it back to the surface a couple of days ago.

As someone who has had cancer, recently finished chemotherapy, had surgery and is currently in radiation the following question is not uncommon:

"So...are you cancer free now?"

Seems like a simple question, one that would require only a simple "yes" or "no" answer, right? It gets asked at Thanksgiving, at the grocery store, over the phone, on Facebook, at the library, any number of places while going about my daily business. I know the people who ask it are worried and they want to be  reassured that I am okay, but "cancer free" means so much more than having "no evidence of disease". So for many of us, us being those who were unfortunate enough to hear the phrase, "I'm sorry, but it's cancer", it's a struggle to answer that seemingly simple question. First, we worry that if we say, "YES!" we are somehow jinxing ourselves right into hearing those dreaded words again. Because hearing 'the words" in the first place has made us just a *tiny* bit irrational. But at the same time we WANT to say yes. We WANT to sound completely and totally optimistic and hopeful. Because that's what we WANT to believe to be true, just as much as you do. Next, we worry that if we say, "I don't know..." or "That's what they say!" or "That's the hope!" that we somehow come off sounding negative or ungrateful or like we don't really know what the heck is going on which would equally jinx us right into hearing those words again! {you know, because we didn't appreciate our "cancer free" time enough} So usually, our answer {or at least mine} sounds something like this:

"Uuuuhhhh....ummm....well, there is currently no reason to think otherwise."

How vague and annoying is that answer? I mean seriously. And now that I type it, I think it also comes off a bit negative and like I don't know what the heck is going on! However, it is what it is, currently there is "no evidence of disease" and "no reason to believe there is anything lurking". But oh how I wish I were brave enough to just shout, "YES! I am cancer free!" Here's the deal though, once you have heard "the words" it's hard to truly and fully BE cancer free ~ even when there is no evidence of disease in the body. Cancer does so much more than attack the body. It comes at your mind like the sneakiest of ninjas, attacking your thoughts, your hopes, and your dreams, your very foundation, your understanding of the way things "should" be.  Even after the physical cancer has been removed from the body, even after you have been told "it's out, it's gone, you're cancer free, everything we are doing now is just to keep it away" the mental cancer is still there, creeping into the darkest spaces of your mind, making your heart race and blood pressure rise, causing your palms to sweat and your face to go numb at the strangest of times, often when you were JUST thinking that everything was okay. It takes longer to eradicate the mental cancer, it's sneaky. It requires much more time to heal. It's still early days for me. I'm still in treatment after all and going to radiation EVERY DAY certainly doesn't help matters, but at this point I'm not sure if I will ever have a truly "cancer free day". So far it hasn't happened. Sure, there are some amazing cancer free minutes and even some stretches of intoxicating cancer free hours, but never an entire day. At least not yet. Until there is a day where posts of bone aspirations, cancerversaries, scans, biopsies, medications, side effects, and endless colors of awareness ribbons don't litter my Facebook feed, until THAT can happen, I can't possibly go a day being "cancer free". None of us can. I guess the simple answer to the not so simple question is this:

"Until there is NO cancer, there will be NO cancer free."

If You Close Your Eyes...

It's true what they say about how quickly the things that are so utterly wrong and upside down become "normal". Because they have to. Because if you don't soften towards them, if you can't learn to breathe through it, if you fight so hard in disbelief about what is happening, you will suffocate. You will become a shell of what you once were, something even worse than the very thing you were fighting. So you go on, you live your life, and you try to meld two very conflicting ideas in your heart: the knowledge that it shouldn't be this way, that this is still so wrong, so backwards, and so hard with the idea that this is YOUR beautiful life and somehow you continue to fall a little more in love with it every day.

2013, you were brutal, but you were beautiful too. Some would say, YOU WERE BRUTIFUL!

So, here is to a happy and healthy 2014 {WOW! First time writing that and it felt weird!}! I'm not huge on the whole resolution thing, but this year I resolve to focus on the health of myself and my family. Physical health, emotional health, and spiritual health, because as my wise friend Jenna says, when you have your health, you have it all. {and sometimes working on your emotional health means eating some Ben and Jerry's, haha!}

Thank you for being there friends and for continuing to be there as we wind our way down this crazy road {radiation starts this month! ahhh!}. Much love to you all in 2014!

Time to Process...

I realize I never updated after going over the pathology report with my oncologist and the reason is this: I did not like that meeting. It's the first time that I have ever seen my oncologist less than thrilled with the progress that was made and it honestly took quite a while to get the image of him standing there saying, "I'm not very happy" out of my mind. But I've had time to process it now, so here goes.

Now, before you freak out about that statement, the "I'm not very happy", like Matt and I did, there is something you need to know, that's not what he meant - it came out totally wrong. Dr. K's bedside manner is a bit dodgy at times and this was one of those times. The reason I know it's not what he meant is because he said so after he looked at me all confused while I was sitting there on the verge of tears and said, "You don't seem very happy?" to which I replied, "Umm...why would I be happy when you just said YOU aren't happy?". He then went on to explain basically that he WISHED I had had a complete response {don't we all?} and that my nodes had been completely cleared {of course!} and that I didn't have to to radiation {again, don't we all?}. I really believe he was just disappointed that he hadn't given me that miracle, "Oh my goodness it looks like you never even had cancer!", that we had all hoped for in our hearts but knew in our brains wasn't super likely. Next he told me that the features of the cancer that was removed were very favorable, so I did what I didn't think I would ever do {because I never really wanted to know}, and I blatantly asked him what he thought my prognosis was and this is what he said:

"I BELIEVE YOUR PROGNOSIS IS EXCELLENT. I DO NOT THINK YOU WILL RECUR."

I fully realize that he doesn't have a crystal ball and that there is always, always, always a chance for recurrence, no matter how "sure" you are that it won't happen. After all, I have seen stories of women who were stage 1 with no nodes {I am stage 2, with nodes} who go on to recur when everything says they shouldn't. This is a nasty mean little a-hole of a disease. I fully understand that we need to be vigilant and watchful with my care and health and that we will need to do so for years and years and years. I have no intention of getting all cocky about this and slacking on my care because, frankly, that would be stupid on my part and it's unrealistic to think that every.single.cell got annihilated, because we ALL have them floating around! But, I also fully recognize that Dr. K has been doing this for a while and he has seen a lot of patients and read a lot of pathology reports. I trust Dr. K to be my doctor and care for me in the best way he knows how.

Dr. K then proceeded to show me the reasons he believes I have an excellent {his word} prognosis. The fact that the removed cancer {which was small} responded to the herceptin as evidenced by the change in HER2 receptor status was encouraging. There have been studies indicating that change in receptor status has positive effects on outcome. The fact that what remains is HIGHLY estrogen receptor positive is also encouraging. We already know that ER+ cells don't respond all that well to traditional chemotherapy, but it is the ER+ cells that respond to Tamoxifen, so IF there are any cells left floating around in there, they will hopefully be rendered dormant by the little wonder pill, Tamoxifen. In addition to the Tamoxifen, I am also having my ovaries suppressed with Zoladex injections every 3 months in an attempt to shut down estrogen production. If the cells don't have the estrogen, because it's either not there or it's being blocked, they can't divide all willy-nilly like they want. Finally, one of the MOST encouraging things is that my KI67 status {the number that shows how fast the cells are dividing} went from 35% to ONE PERCENT!!!! There have been several studies indicating that people who were not lucky enough to have a pathologically complete response to neoadjuvant chemotherapy, but had a clinical response, had low post-treatment KI67 status, and were ER+ have a comparable prognosis to those people who DO have a complete response {which is excellent!}.

So all in all, the meeting wasn't BAD, it was actually pretty good, as indicated by the only statement that really matters, the one in bold above. But the initial shock of "I'm not very happy." was hard to swallow. Thank GOD Dr. K's wonderful nurse practitioner was in the room to step in and let us know what he was really trying to say. Thank GOD Dr. K spoke up when he was confused about my "unhappiness" so that he could clarify why he said he wasn't happy. Thank GOD that the nurse practitioner was willing to sit with us for an extra 30+ minutes to reassure us and answer our questions. Thank GOD I live in a place where I can get the kind of treatment and care I am getting.

I don't know what the future holds, but I do know who holds the future and I completely trust Him to take care of me and my family.

Now we move forward. Onward, to radiation and tamoxifen and ovarian suppression and herceptin and healing and reconstruction and GETTING BUSY LIVING!!

Thanks for being there friends, and for waiting extra long for this update. XO