Health Update

As always, my case is never typical. PET & CT scans show lesions in the two lymph nodes and lungs have shrunk, but the lesion on my L4 vertebrae has grown. Dr. H was perplexed that I have both shrinkage and growth. 

Going forward...⚠️TMI Warning ⚠️ 

(This is cancer, it's not always pretty.) 

•••Dr. H wants a break in chemo (possibly all summer) due to the diarrhea side effect being uncontrollable. Seriously, I have had to eat Imodium like candy (40 pills a day +prescription Lomotil...yes, I followed Doctor's orders). It has since improved, but I still take a daily dose of Imodium to maintain control. Additionally Dr. H has prescribed Sandostatin, a shot 3Xs/day that will further control the yucks. 

•••Dr. Shrake, my radiologist, has agreed that I can have radiation on the L4 lesion. It's not cceligible for SBRT, so that means I'll have daily radiation for 5-6 weeks. When I say cancer is my job, it's the absolute truth. Currently the pain level is a pretty intense 7/10, literally a pain in the ass that radiates to my left hip, so Dr. H increased my extended release Oxy. The good news is once it's zapped the pain will be gone. 

•••Additionally, we will return to Dr. Alese at Emory Winship for a 2nd opinion. He will decide if it's time to look for a trial, or agree with Dr. H who is contemplating possibly going back to Irritotican +Erbitux (no Avastin or 5FU pump) in order to control the diarrhea. If you recall, it's Erbitux that can cause a nasty facial rash. 

💙💙💙

Overall good news. The lesions are shrinking, and the one that isn't is about to be zapped with radiation. So even though pain is intense, it will improve over the next few months. I was nervous about taking this pain on an upcoming cruise; after one night on the increased ER oxy dosage, my pain level has dropped from 7 to 2/10. Additionally I'll be getting a massage before the trip, so hopefully the combination helps ease my pain level. Dr. H stocked me up with other meds for breakthrough pain. 

Oh, the joys of making sure you can enjoy vacation while having cancer pains. 

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.

Punk Kid in D.C. {DAY 2}

Wherin the itchy hat comes off...

One of the evil side effects of chemo that no one really talks about...because nausea and neuropathy get ALL the attention; insomnia. Day 2 of 4, and I've slept maybe three hours. While sitting trying to listen to a discussion I start to doze, but the minute I get to our room my mind starts buzzing. I timed my non-naps around topics of interest or participation, but grateful Fred was there to be my second set of ears to fill me in on what I missed!

Aside from the insomnia, I was also in a lot of pain. Honestly, I didn't even realize the pain level until I didn't have access to a HOT shower. Apparently one hot shower a day is enough to relieve my muscle tension, but our hotel shower was lukewarm at best. I have all the oxy and hydros, but nothing for muscle tension. Thankfully my nurse was able to call in a muscle relaxer to a local pharmacy, and seriously save the week!

After picking up my script (and one insane Lyft ride), I returned just in time for the group share. This is where you stand up in front of 150 other attendees and share your story. And this is where the nerves kicked in...public speaking is not my favorite. You guys know how much I hate spiders...well, I'd take a sit down meeting with a spider over public speaking. But as the stories continued I began to realize this is my tribe, they fight - they are strong - they hurt - they cry - they are angry...just like me! The nerves fell away and I simply listened to my tribe.

Usually I would try to prepare something in my head, but I was so enthralled by everyone else's story; by the time my turn came, I was blank. I stood up. I was wearing a hat instead of Pearl (my wig), and it had been itching like crazy all day...so that's the first thing that popped into my head. I took it off. I was bald. And then people started to clap...then they started to stand. And I silently thanked Daddy, for a legacy and story worthy of a standing ovation. For me, ditching the hat was symbolic. I was breaking open and bearing my truest self. If all those before me could bear their souls, I could too! I can't fully recall my words, but I do remember explaining the hurt and heartbreak of having to turn to Fred and tell him he'd have to do it again.

Poor Fred had to follow that show, but as always he is the rock of this relationship. (Clearly, making me the rolls.) He spoke of bringing Daddy into our home, and that although I asked it wasn't even a question - we were going to be the ones to care for and love him through. I am forever proud of the man I married, but it's a special thing to witness his story touch other survivors and caregivers; people that have personally lived similar stories.

From that point on, I never covered my head again (except when outside, because winter). I try looking back. To that Heather that just lost her dad, grieving; for months, she couldn't go a night without reliving his final week. She had given so much of herself, she didn't know what to do when he was gone. And now, the level of selfishness I feel...knowing Fred is giving of himself in the same way. We both needed this release. This welcoming. Into a tribe of people that are fighting to improve and save lives!

Punk Kid in D.C. {DAY 1}

The chemo goblin is slowly leaving and I'm attempting to begin writing about my Call-on Congress week.

DAY 1 - Meet & Greet

Being an introvert a "Meet & Greet" is essentially my worst nightmare. Nevertheless, our friends and family and strangers sponsored this trip so I was determined to be present every minute! The first person we met was event photographer and fellow survivor, Evan Cantwell. The photo of me with the blue scarf & feather, Evan took that! He immediately put me at ease as we shared stories and laughed about the ostomy diet. (Corn chips are a no-go!)

The second person we met was Andrew, whom I would describe as FightCRC's cheerleader. He's that kid at the sleepover that stays up all night and STILL has energy the next morning. At the closing dinner, he performed his own one-man version of some N'Sync song. I think. (I never purchased a boy band album post-NKOTB...pretty sure that makes me an OG.) It was Andrew that introduced us to our mentor, Walter.

Walter has soul. You know those people that you speak with and just know there's something deeper; like he knows exactly why he was put on this Earth, and it was cancer that set that voice free. Walter's story is powerful...God's hands all over it. Because he was aware of the blessing that his cancer was found early, Walter pays it forward by advocating for those Stage IV fighters that can't advocate for themselves. He further explained what to expect over the next few days; telling us it was as simple as sharing our story and not being afraid to show emotion (tears, anger, whatever it comes out as). It can't be that easy, right?! There's got to be a certificate or handshake...advocating can't be that simple!?

As we left for the evening, I ran into my favorite Instagram find Sarah DeBord (@theSarahDeBord). Sarah is a Stage IV survivor and thriver! Emphasis on THRIVE. I complain about my post-chemo joint pain and ankle swelling. Sarah has "fat lefty" (lymphedema in her left leg). Dumbed down version; she had so many lymph nodes removed her body has a hard time getting rid of excess fluid and it builds up in her left leg. BUT that doesn't stop her from living. She just completed her 107th round of chemo and travels and advocates and inspires little 15th rounders, like me.

And yes, if you're reading this trying to plan for Call-on Congress 2018, we Uber'd to the Meet & Greet. The tavern was less than a 1/2 mile from the hotel, but it was super cold and I only manage 1/4 mile (no hills) before needing a break. Pause while I laugh at myself thinking I would be able to hit a walking trail after chemo infusions. Ha.Ha.Hahahahaha. Ha!

So there you have DAY 1 of 4.

To all those that donated and made this trip possible, we honestly cannot {Thank You} enough!

For those secretly wondering why we asked for support, or why we don't ask for more financial support:

When facing chronic illness, you quickly evaluate expenses and priorities. Obviously much of our disposable income now goes towards medical bills, but we still allow for a small vacation budget because we desperately need a break from doctors offices and hospitals and cancer. After my diagnosis, our once week long vacations became extended weekends or tag along and split costs with the Hicks's. (Thank you Hicks's!) For us, Call-on Congress was not a vacation but work. I couldn't ask Fred to financially support a trip that didn't give him a minute away from the cancer bubble. Hence the call for sponsors.

Late last year I finally accepted this illness as chronic, and applied for disability. Yes, nearly two years in before I was willing to accept that I wouldn't be returning to work anytime soon. That money will go toward bills, repairs we've put off, and travel. I told you guys Sarah is my inspiration; I too plan to live & thrive & travel while fighting Stage IV colon cancer!

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!

March

Dear Friends,

March is Colon Cancer Awareness Month, a cause very near and dear to my rear. In less than two weeks, the Knight and I will be attending Call-On-Congress. A trip we were able to afford because I was awarded a scholarship AND your generous donations! We will spend two days in training, followed by an entire day at the Hill meeting with members of Congress. Thankfully my doctor has allowed for a short chemo break, so I will have the energy to walk those hallowed halls.

For those interested, this link provides some ways you may participate from home. There are two fantastic panel discussions that will be live streamed via Facebook. In addition, I plan to post an update or video to Facebook at least once/day.

Today I'm asking you for your continued and specific prayers. I fancy myself a writer and not a public speaker, so I'm taking what feels like a giant leap. Pray my voice finds the words, and the confidence to speak those words. Pray those words find the ears that will lead to change(s), and potentially save a life.

💙

Health Update: 2017

Fair warning. This one is long. Go ahead grab some popcorn, make a cocktail, put the kids to bed, take a pee break (if you're not already reading this while on the throne). I'll wait...

...no really, the cocktail was for me.

First, let me clear up a little confusion. My last social media post was a bit confusing. By posting I was "at Emory" some people believed I had been admitted, when in fact we were there for our consultation per my last update. Just a visit. Not a sleepover.

Secondly, I'm going to lay down some quick knowledge. While everyone is "aware" of cancer, very few seem to understand the basics like staging. Maybe it's time for a generic cancer education month. In all honesty, I avoided putting it out there because I was so fiercely protective of the words I spoke. While I struggled to remain positive, I didn't feel it was my responsibility to educate. The information is out there. It takes 3.6 seconds to google.

But here we are. Walking down the road I mentally prepare for but never verbalized.

By definition, Stage 4 means medically incurable. BEFORE YOU EVEN START:  That's not to say there are not Stage 4 cancer survivors. I'm saying in order to survive, you need a miracle. Because of medical advances in cancer treatments many diagnosed Stage 4 are thriving and living longer than ever before. As long as they have a chemo drug that holds off growth, and the researchers keep pushing out new/improved/effective treatments; more choose to view Stage 4 as chronic versus terminal.

And that has been my mindset. I have chronic cancer knowing complete healing will only come from God. Some of you may have even picked up on my word. I refer to myself as a cancer "warrior" versus "survivor" because my fight would continue after chemo. Survivors quickly return to their old life with little effect. Warriors may return to their old life in small ways, but continue to float back into the cancer universe be it lifelong side effects or additional treatment.

Currently the cancer cells reside in two lymph nodes on my left upper abdomen, and a new spot on my spine L4 vertebrae (lumbar). Inoperable.

I need a miracle.

Medically I will restart chemo, and be on it for the rest of my life. Chemo is not the cure. God is the cure. Chemo gives me time. Maybe enough time to see Joe Biden's cancer moonshot find the medical cure for cancer. Chemo until God gifts me with a NED (no evidence of disease) or the chemo stops working, at which time we move to the next available treatment and pray it is equally effective.

Thankfully I will be able to continue treatment at my oncologist's office in Duluth. (((Volunteers please see last paragraph.))) The plan is to restart my previous chemo regiment (the easier two chemo drug concoction) FolFiri because it has already proven effective. Currently I'm weighing a choice of biologic that will be paired with chemo. Avastin or Erbitux. One google search for "erbitux rash" and you see the dilemma. Given my skin sensitivity and anytime they say only 10% chance, I fall within that 10%, we're leaning towards Avastin.

Have I wrapped my head around this? Not in the slightest. No matter how prepared, it doesn't make reality easier to digest. Just as one goes through the stages of grief, I imagine it will be the same. Ever so slightly more steps forward than back. I expect I'm going to make an ass of myself (more than once). And I will find a place of acceptance and peace in a much different way than friends and family members.

This feels like the most discombobulated post I've ever written. I generally try to focus on the good, but some days I get bogged down with what cancer has stolen. That part hurts. Life is very different from what I had envisioned.

I'm grateful for your continued prayers.

---

VOLUNTEERS:  Yes, even though chemo is local we still need help! The less time Fred spends with me at doctors offices, the more time the two of us have together AWAY from cancer. Fred will prioritize and attend post-scan appointments, but your gift of transportation is a massive blessing! I will be setting up a Care Calendar, if you're familiar with Meal Train it is a similar concept. I can request/schedule transportation, meals, or simply set visiting hours.  Chemo is scheduled to restart January 30th, so looks for a post on FB within the next week. (Thanks to Andrea for the recommendation!)