Punk Kid in D.C. {Day 3}

Day 3:  This one is for Patsy.

This day was full of information...and nerves. We were given a list of four asks to work our story around, and the one that called my name was ACA mandates. If you follow me on FB, I generally avoid politics with the exception of healthcare.

Here's the deal. When Trump ran on a campaign to repeal ACA, I was terrified. I know the ACA isn't perfect, but there are specific mandates that provides those with cancer some much needed relief. And it wasn't until weeks after the election Trump stated he would keep the mandate on pre-existing conditions. That provided some relief; but when you're fighting chronic cancer, the mandate on lifetime and annual caps starts looking like your own personal expiration date. Real. Talk.

To be clear, we have fabulous insurance. Blue Cross Blue Shield even assigned a case worker after each major surgery to call and setup home healthcare if/when needed. It's great...as long as Fred is never laid off or wants to find a new job. And that is why I feel like such a burden. Because finding a job becomes all the more difficult. Say he finds a dream job, but they don't offer fabulous insurance...he'd be giving up a dream, for me.

The other reason I "get rowdy" about healthcare is for you - your family - your children. Because I have the perspective of the great big scary c-word, and no one thinks it could happen to them...until it does. Because when facing a scary diagnosis, whatever it may be, your energy should be focused on healing. And if it takes my chemo brained bald head going to the Capitol to advocate and improve even one life, I'm going to do that. I love you! You are worth my time and energy!

Okay, stepping off the soapbox...

While the ACA asks called my name, I had trouble wrapping my head around it and getting my story out. We practiced, I flailed. Not fail...flail! But I did get emotional. The tears come so easily now. When I tell our story, images from my dad's diagnosis to my own flash through my mind. The incredible kindness we have seen and received because cancer. The hurts. The beauty. The triumph. Yeah...emotion comes easily, in a good way. I wear my heart on the outside now.

Just when I thought we were getting down to business, and the tears had ended...they got me again. It was called "Sparks of Strength" a luminary event. I should have known from the name. For this event one-by-one we speak the names of who we are fighting for, and light a candle. My goodness the snot. By the time my turn came it was pouring out of my nose. (One of the post-chemo effects, runny nose...add tears and it's like a fountain.)

My dad.
Myself.
And Patsy.

I haven't spoken of Patsy Petzold in a while. In fact, when she passed, I didn't even mention it on Facebook. I couldn't. I was heartbroken. Patsy was the first colon cancer survivor I reached out to through email. As my first cycle of chemo came to an end, amid my celebration, she learned her maintenance chemo stopped doing its job. I initially reached out to Patsy because of how similar our stories were, from birthday to diagnosis dates, our stories matched exactly two years apart. In the very brief time I knew her, she mentioned her work with FightCRC, and her plan to attend Call-on Congress. She was unable to make that trip.

My story was unique, and based on the election results (and my fears previously discussed), I was ready to tell my story and fight to improve the lives of others. So when I saw the scholarship opportunity, I jumped.

I am here because of Patsy. I'm here because daddy gave me a story worth telling. I am here because my Knight gives me the love and energy to fight, every day. I am here because God isn't done with my story, and my goodness, what a beautiful story He is writing!

To Patsy's family, I hope you find comfort in knowing even a brief conversation with Patsy left a lasting impact. Her light was that strong! And I promise, as long as I have breath, I will carry her light with me as I advocate to improve lives.

Sharing the light...

With each hard turn that comes our way, it's made clear God has already carved our path. When I desperately need a gentle reminder HE is steering this ship, an angel appears! From complete strangers going out of their way to tell me I'm beautiful just as I was loosing my hair for the second time - to unexpected gifts and cards - to sending the perfect friend to help me work through my darkest struggles; His timing is always perfect.

For those that don't follow along on Facebook; after an extremely hard round of chemo, I feverishly started working towards improving our bedroom. Feverishly, because every other week I disappear and the chemo goblin takes over. And you guys, goblins canNOT decorate. It's a good day if they brush their teeth. Not. A. Joke.

Since I will be spending a lot of time in our bedroom, I've decided to turn it into a retreat. A happy and fun and cozy and calming retreat. The Knight and I have discussed new furniture for years, but never found anything to our liking. Thanks to some recommendations, I started looking at furniture on Macy's website. Because on chemo you don't have energy to shop. You pre-shop, create a list, and have a game plan.

As with furniture, we've also struggled to find a new comforter. The comforter has eluded us even longer than furniture; at least five years. FIVE YEARS! So after finding a few furniture options, I switched over and started looking at comforters. Little did I know, God was about to send us another angel.

In that very instant, a FB message was being composed. A couple hours later as I read the note, I realized the timing. As I was randomly searching for a comforter, God sent us an angel to cover the cost of a new comforter.
I. Was. Floored.
It was like a one-woman revival in my house.
And the tears...
My God Is Good!!!

You may think this is where our story ends.
We find a comforter and our sweet angel ships it off tied with a bow.
But you would be wrong.
Oh so wrong!!!

After sending our angel the comforter details, she asked about sheets. Not fully understanding her implication; I let her know it was a bed-in-a-bag set, and that we have two sets of nice/soft sheets. Then she asked about a rug...

Backstory:  When we moved into our place, there was a slight painting mishap. I'm a little bit on the clumsy side, your standard fall UP the stairs clumsy, so we've always had a rug in our room to cover my whoopsie-daisy. Did this angel know we've always used a rug? Nope! She's never set foot in our bedroom.

You guys. Prepare yourselves...
The rug was the very FIRST thing I bought. It was purchased before we even went furniture shopping!!! If you still aren't moved, you're dead. Because, my friends, that stuff is powerful! Get on your feet walk around the house because you can't sit still...POWERFUL!

Thank you kind angel for listening to His call. Thank you for another reminder that this story is much bigger than me and my illness. Each time we lay our heads down or step foot on our rug, we'll be reminded God is in the details. I don't know where this road goes, but if He cared this much about a comforter & rug...it must be good! I'm so excited to see what happens next.

Friends. If I can face this diagnosis and a lifetime of chemo (until God decides otherwise), and still find beauty and goodness and kindness in this world; certainly you can see it too! If it's this good and beautiful on this side...can you imagine?!! But don't fret, if you're having trouble finding the beauty, I promise to keep sharing the light!

My Truth, Part II

Confession. I've been concealing my truth again. I've been in a mental funk for a good four months, and I think it's because I'm not being transparent. Or the super cool buzzword...authentic. We live in a FB edited world, and tend to only show the happy times as if that is real life. But, in all honesty, I wanted to give everyone a break.

Cancer is exhausting, for both the patient and their support team, and mine was an especially long journey. At the beginning when meeting new doctors they would comment on my age, that has since morphed into boy you've had a bumpy road.

After chemo everyone has the same response, "So you're done, right. It's over. You're cured!? Remission?" I've always been particularly slow at answering the last two. Because in many ways, after chemo, the real battle begins. You have a parade of people supporting you during chemo, because it's an obvious physical weakness, but you are very much alone in the scan stage. The mental strength it takes to push through that anxiety, for me, has been an incredible struggle.

At the end of May, I had my first true post-chemo scan. They noted a tiny spot on my right lung. After further testing, inactive PET/too small to biopsy, my oncologist decided on a wait-and-see approach. The scan immediately following our vacation at the end of August showed growth as well as a small spot on the left lung, and a biopsy was ordered. Though the results were not 100% definitive, because once again they didn't retrieve a large enough sample, it's likely metastasis.
So there you go...

It's back.

I knew from the start this was a possibility. While I avoid statistics, because of my dad, I am aware. It's painful. To think of yourself in terms of a percentage instead of a human being. The places your mind wonders. It's not for the faint of heart. But I also know the God that created this body is the ultimate decider, and no matter the statistics, this journey is completely out of my control. No kale diet. No aloe juice. No alkaline water. No medicine. No doctor has or ever will cure cancer.

Think about it. Right now doctors are researching and experimenting with a way to use HIV to cure some late stage cancers. That's a dumbed down version, but yeah. HIV. The disease some claimed God sent to "kill off the gays" is actually being used to save lives. The very disease that brought people to their knees asking why God would send such a terrible illness, may lead to saving far more lives than that which it has taken. Friends. If something like HIV can be made into something beautiful, think about that in terms of our own lives. With time and renewed perspective, we can make anything beautiful. Except spiders.

Going forward. Treatment will be SBRT (radiation). While others may receive daily radiation, SBRT is able to hit the lesions with multiple angles therefore receiving higher dosage requiring fewer treatments. Side effects are minimal, fatigue and possible esophageal irritation. I've already gone through the initial scan, and today I had my "world" tattoos (if you watch Friends, you know). Then, after we return from vacation, the fun starts.

So, it's time for me to warrior up.
Again.
I am
sad.
I am angry.
And, at times,
I am weak.
Very, very weak.
But never
doubt my strength.
Still smiling.
Still laughing.
Still...
and knowing.

Psalms 46:10

Things 2015 Taught Me

* When someone calls me strong, occasionally, it's okay to let out a slightly conceded "yeah, I know." Because yeah, I'm one tough lady.

* When you feel super crabby, smile. Make someone laugh. Being the light in someone else's life, even when you find yourself in a dark place, is an instant mood booster. But it doesn't last long. This is pretty much why cancer requires good humor.

* The occupation "Hospitalist" is loosely translated to:  weekend devil that orders crazy meds until you have no appetite just so they can then order Ensure cause they're bored and think it's funny. I said loosely...

* Asian nurses hurt. You can tell them your skin is sensitive until red in the face, but they are still going to rip that bandage off and probably take some skin for good measure.

* When the C gets dumped into your marriage, it will turn small cracks into rubble or refortify the walls. Not saying our marriage is perfect, but it has certainly proven we make one heck of a strong team.

* Attitude really is everything. Really! Positive, half full, optimistic, joyful. Those people in the infusion room talk about life. Negative, half empty, pessimistic, doubtful. They talk about their side effects. I believe words have power and we receive what we speak. If that's the case, do you want to experience more life or the side effects of living that life. 

Lastly. I think I have previously written, somewhere, that my prayers have always been teach/grow/change and simply to experience everything. And while most may focus on the pain and what cancer or chemo may take away, or let out a eff cancer...

Here's what I know. I have been gifted the ability to experience this side of humanity. And it is an incredible experience. As someone that has prided themselves on being fiercely independent (to a fault), being offered help and humbling myself to accept my own weakness has certainly been a growing experience. 

And the people I don't personally know. Some named. One anonymous. That send unexpected gifts that bring me such joy. I know this will sound strange, but it feels like a reward. I know. Calling cancer a reward, girl lost her mind! Stay with me...

Being a caregiver and loving on my dad as he exited this world, was in a word stressful. Though grateful for the time, it eats away and drains your soul. As caregiver, you are literally giving your energy to that person. And I know this because I feel Fred feeding me with his energy. You don't realize how much it takes of you until they have passed and you're suddenly left without a to-do list. I gave so much of myself, and now my cup is being refilled as people send me their love and prayers.

I mean. Basically what I'm saying is Fred better win the lottery after all of this. Because being a co-caregiver and then primary caregiver proves this man I've married is a SAINT!

About Nurses

The nursing staff at Gwinnett Medical Duluth deserves some praise. While I was terribly miserable in the gerbil cage, they kept me laughing and entertained. I guess it comes with being young and not a complainer, but fairly often they would come into my room just to chat. So see terrible-awful Emory GenPop nursing staff, it's not me - it's YOU! 

It's here that, try as I may, I have accepted I'm never going to be able to connect with Asian nurses. The older the more difficult. Its cultural. You are their job. Filipino totally different. I recognize the accent. Talk about lumpia and throw out the only Tagalog word I know and I've got 'em! Yep, totally made it a game at this point. 

-10 points:  make the Asian nurse smile

-100 points:  make the Asian nurse laugh

-1 billion points:  Asian nurse gently removes a bandage

[Note:  Filipinos are Pacific Islanders not Asians, but I know...white people have difficulties distinguishing the two. If you're going to call them Asian, call them happy Asians. Watch Manny Pacquiao enter a boxing ring and you'll understand.]

It's here the nurses share hilarious stories about other patients. Like the guy that, not even kidding, asked the nurse for a back rub. I nearly laughed out the drain tube from that one. Or the man (not elderly, not paralyzed, no broken bone, or so much as a scratch on one arm) asked if the nurse was going to feed him his lunch. I was in such shock I couldn't even laugh. Either his wife does everything for him including wipe his butt, or the man is watching way too much porn!

It's here, that although I've heard it over and over, I start to accept that yes I am a positive person. And I can't quite understand why they tell me this. They always ask (because I'm young), I share my story (caregiver turned cancer patient), and they tell me I have a good attitude. Is it a feeling I project? Is it because I smile and make jokes? Or simply that I don't break down in tears? And in fact, on occasion, my story brings them to tears. Basically, show me the opposite so I can understand what a bad attitude looks like. 

It's here I get my first hug from a nurse because, while happy for me, she was sad to have me leave. And it's here I make it a challenge, 50 points per hug. 

Chemo Vacation

In preparation for the upcoming surgery, and to make sure my blood levels were normal, my last round of chemo (#6) was July 13th. My pre-op & colonoscopy are scheduled this week. Chemo free for nearly a month?!! Hello vacation!!! 

The FOLFOXIRI was so rough I decided to throw a halfway party for myself as reward. I needed desperately to acknowledge and celebrate my success. To all my dear friends and family that made the drive (and those that were there in spirit), thank you! 



The past two weeks I've spent my time visiting with friends that I haven't found time, or I had to cancel plans due to chemo. And getting some time in with the nieces and nephews while I had energy. No joke. The last time I played puzzles with Brooklynn I was so weak I had to tap out after two. Add chemo brain to the mix. I got schooled by a four year old! It wasn't pretty. 



TMNT with Rylan. Candyland with Brooklynn. A carousel ride with Jackson. Mother's blueberry cobbler. My spirits are fully recharged. I'm feeling strong and ready for the next surgery. 



In other news, I took the cue ball out in public for the first time. The wig is too hot and miserable to wear outside in the summer. I honesty forget I'm walking around bald, at least until I notice the stares and double takes. It's okay. Everyone has a cancer story, right? I convinced myself I reminded them of their loved one or friend with cancer. 

You know what would be great, if those stares were followed with a word of encouragement. Being on this side has made me rethink my own reaction. Tell her she's beautiful. Tell her she's strong. Change her story. Imagine. If someone had the courage to reach out, my story would be completely different. Our words have power, use them well. 

Cancer

A dear friend recommended a NetFlix special on Tig Notaro called "Tig". It felt like someone was telling pieces of my own story. And if she thought her story was funny, well, mine is down right hysterical! If you're filling in the blanks, you already know what's coming next.

I've got the cancer.

I was diagnosed at then end of February, and decided to fight silently. But for some reason, in the last few weeks, I've felt like it is time to share my story. I've been weak. Mentally. Physically. But as I started writing, I started feeling stronger. And that was one of my goals. So here we go...

Note:

•Most of this has been written at night while experiencing pain med induced insomnia and recovering from an intestinal virus. Don't judge too harshly. 

•Though this has all been written over the last month, I've post dated everything to correspond with the correct date. I've provided links to posts in chronological order below.

~~~

Everyone hears the word "cancer" and has the same reaction. I still remember when my dad's cousin, Barbara, told me he had cancer. The shock. The tears. The fear. But when I was given my own diagnosis, I felt peace. Cancer has worn out its shock value. The only thing going through my mind was "Okay Schiller, put your heels on, it's your turn to fight." [Cue 'Eye of the Tiger'] Yep, I could hear the 'Bam! Bam Bam BAMs!' in my head. 

And then came the hard part. Friends. When you were your dad's primary caregiver, and you find yourself walking in his shoes two years after he passed, the places your mind goes aren't so fun. But those thoughts will remain between me & God. Words have power, and I choose not to give them that power. At the same time, I want to acknowledge that I went "there". And occasionally, on the hard days, I find myself "there" again. 

My lowest point was when I started loosing hair. My chemo regiment (FOLFOXIRI) is aggressive, but hair loss isn't a side effect. I was told my hair would thin, and it would start midway through treatment. But by the second round, I was shedding hair. Shedding! I had held on to the idea of being sick but not "looking" sick. Lady with bald head screams "I HAVE CANCER!" 

Fred tried to make the shave fun, but I was miserable. I closed my eyes as the long hairs fell to the floor and felt my identity slip away. I look in the mirror at a body full of scars and face that I simply don't recognize. And that's on a good day. The bad days it's straight up Uncle Fester. (No, I haven't tried the light bulb trick...yet.) 

So I write. I write in hopes I'll find strength in giving this story a voice, and with that strength I'll find my reflection. I write because I want to recognize the lovely friends and family that encourage and lift me up when I am weak. I write because, once again, my husband finds himself being a caregiver to a cancer patient. I write because I want people to know cancer doesn't always come with a warning. I write because my treatment is so rare I haven't found much information, and hopefully others facing the same treatment will find this and go in little more prepared. 

Cancer type:  Colon...just like my dad. The kind that "older" people get. Typical reaction from anyone in the medical field is "oh, you're so young". Yep. Story of my life! 

Symptoms:  ZERO. I went to the ER because I was vomiting & dehydrated. I thought it was food poisoning. It was a bowel obstruction, and that's the only reason the cancer was found. I thank God every day for that bowel obstruction!

Family History:  It's recommend that with family history you get a colonoscopy 10 years prior to family member's diagnosis. That would have been 50 (52 to be exact), the typical age you start getting checked. I had planned on 40 to be extra precautions. Ha! If Fred & I are able to have children, their screenings would need to start at 24. 24?!!

Fun Fact:  I'm the second youngest patient my oncologist has treated for colon cancer. The other person was 18, and genetically predisposed. My genetic test came back negative. 

Warning:  Being colon cancer there may be things some find a bit TMI. I'll give a TMI warning!


Chronological Order:

1. Diagnosis*
2. Recovery
3. CT MRI Biopsy, Oh My!*
4. Treatment Plan & Chemo Round 1*
5. Chemo Round 2
6. Shots! Shots! Shots!
7. Chemo Rounds 3-5
8. MRI Check Up*
9. Chemo Round 6*
10. Digging Deep (pun intended)
11. Inspired

*Diagnosis & Treatment Updates

Inspired

Last night I randomly decided to watch Bryant Gumble's sports thingy on HBO. Yes, pretty sure that's the actual name of the show. (Probably not.) It was a segment about the domestic violence rate within the MMA. They interviewed Christy Mack who was beaten by her ex and sporting a bald head. And the reason she gave for being bald, it signified a rebirth. 

Well, isn't that a lovely way to think about chemo and going bald!?

I have never watched Bryant Gumble's sports thingy. I have never watched more than 30 seconds of a MMA fight. I have never heard of Christy Mack and something called a War Machine. A quick Google search and I learned she's apparently a porn star. The ex hacked her hair during the attack. She shaved the rest. And she too struggled with her new look, "It's hard to look in the mirror every day and see someone you don't know." 

My goodness! I'm always fascinated by how and whom God speaks through. So many would ignore her simply because of her occupation, but I deeply thank her. I have struggled with my hair loss. I needed desperately to rethink my situation. I needed hear those words. From a porn star beautiful human being. 

So here I am

Fighting

Proud 

Strong

Being reborn

And I know one day

me and this bald head

will feel beautiful again

Digging Deep (pun intended)

Another day. Another doctor. 

Dr. T is my GI doctor that I've never actually met. Dr. E (Surgeon #1) wanted to personally do the first colonoscopy, so Dr. T got the boot. The only difference between the two colonoscopies (besides the doctor) is drinking the fun juice. This appointment was basically to meet and prescribe the medication. 

The one thing Fred and I noticed was how uncomfortable he seemed. We've noticed this with every first meeting of each new doctor. They don't seem to know how to handle someone my age having this particular cancer. 

Dr. T must have thought I needed some hope. He kept telling us about a friend of his with the same cancer/same stage/same mets (older, of course) that is doing well over five years later with maintenance chemo. I think they expect me to be afraid, or nervous about the future. 

What they don't know is that I've had an amazing life. Every new experience has perfectly prepared me for the next. The night before my dad passed, as he made his final transition, was the hardest thing I had ever experienced. Honestly, it left me terrified. I knew it was preparation for the next hardest thing, and what could be harder than watching someone you love pass away while being responsible for their care?  

Well, here I am. Facing down the same disease. Knowing all the statistics (that I push to the back of my mind and ignore). Knowing what the end stage looks like. But also knowing wherever this experience takes me, I have the strength to push through. Physically. Mentally. Spiritually. I entered this world made to be breakable, but repairable. And after everything I've been through, I like to think of myself as bendable. 

"The robbed that smiles steals something from the thief."

-Shakespeare