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!

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!)

CT MRI Biopsy, Oh My!

Five weeks after surgery I was finally healed enough to lay flat for thirty minutes, and able to get a new MRI. The previous MRI showed a possible spot on the liver, but it wasn't a good scan because it was post-surgery. This was a big one. The one that would confirm stage III or IV. 

•I have a tiny 1.5 cm lesion on the liver.

•I'm officially diagnosed as stage IV.

A biopsy followed to confirm colon cancer. 

Enter the most painful thing I've experienced to date. Biopsy #1. Going in I knew there was a 50/50 chance it would be painful, and because of the location they didn't allow much sedation. I felt the crunch as the needle passed through my tissues. I was crying on the table. Crying! I am not a crier. I breathe or moan through pain. When I cry, it's bad. And the pain didn't go away after the procedure. Two rounds of morphine did nothing. Dilaudid finally got the pain under control. And then I spent the next five days drugged, attached to a heating pad. 

When you label something #1, there has to be a #2. Yep. All that pain and it wasn't a good sample. Just the thought of having go through that all over again had me in tears. But the second would be done at Emory, and I made them well aware of the pain I experienced during the first biopsy. The first was CT guided, but the Emory biopsy team came in and based on the location they wanted to do MRI guided. It meant I would have to reschedule, but if there was even a slight chance it would make the procedure less painful I jumped!

By the time the MRI assisted biopsy was scheduled, I had completed my first round of chemo. This time I was under twilight sedation. You can listen and complete tasks, but typically don't remember. Oh, I remember. I let out a good moan as the needle pushed through, the doctor was surprised that I was awoken by the pain and quickly increased the sedation meds. I was given a script for Percocet to manage any post procedure pain (I wasn't prescribed anything after the first biopsy). The team at Emory did a fantastic job, and I only had minor pain. Hallelujah! 

If your lesion is high, on the "top" of the liver, ask for a MRI guided biopsy. Seriously. No one needs to experience the level of pain I went through with the CT guided biopsy. 

Diagnosis

At the end of February, I was sick. Terrible stomach cramps, vomiting to the point of dehydration. Fred and I had tickets to Oysterfest and I was thinking I would meet up with him later, nope. By the time he got home I was deciding between urgent care or going to the ER. I let him sleep and when he woke up the next morning I had decided ER. 

I was given some fluids in the ER, and they did a CT scan. There was a spot on my colon, but the doctor assumed it was inflamed because I was sick. I was recommended a surgeon, but more of an "eh, if you get around to it". My symptoms continued, so we made an appointment. 

By the time we got to the surgeon, I just knew it was endometriosis related. From my last surgery, I know my uterus is stuck to my intestines. It had to be that it entered my intestines/colon. Even given family history my surgeon (Dr. E) kept assuring me it probably wasn't cancer. I was admitted to the hospital for a colonoscopy. 

Fast forward. I had a bowel obstruction & was wheeled into surgery. 

I awoke to a body that felt like a bomb had gone off. Eighteen inch vertical abdominal incision, 34 staples, and a temporary ostomy to boot. Yeah, the poop bag. Later on I would be grateful for my tummy gremlin (stoma), but in the beginning I truly hated my body. 

I was alone when I was given the cancer diagnosis. And that was the day I learned how much of a mental game I had ahead. That day I fell apart. It was student nurse day. I was breaking mentally, and my body reacted physically. The nurse & student nurse didn't notice. The patient care tech took one look and knew I needed to relax. She gave me my first bed bath, and helped me calm myself. I'll be forever grateful for her care. 

My brother and Fred arrived at the same time. How do you tell your husband we're about to start another cancer journey? Again?! So soon after we had lost my dad, to the same damn cancer? I whispered it to my brother first, and I guess that gave me enough strength to speak it into existence. Stage III Colon Cancer, possible spot on the liver. 

Recovering from surgery, cancer diagnosis, and having to learn how to manage this new body was impossible. Fred jumped in and learned everything. From helping the ostomy nurse, to sponge baths, to distracting me so I could push through the next pain med, Fred became my saving grace. At one point he was helping me shower and wash my hair, and I look down at myself naked, body ripped apart, belching like a man and just start laughing. I tell him I've never felt sexier. The truth is I have never felt more loved. This man is truly my super hero. 

We quickly learned I was given the worst care when I didn't have someone sitting with me, so Fred started lining up "babysitters". Friends that would stay with me, and give him time off to take care of our house, rest and wrap his head around what was happening. Friends that held my hand, rubbed my feet, and helped me feel human. I even had friends jump in and help the ostomy nurse. I have some GREAT friends, and words don't exist to express my gratitude. 

My hospital room smelled like a floral shop!

I was released from the hospital after 6 days, and I spent the next month recovering. Based on how easy it was to get up and walk after surgery I expected an easy recovery, it wasn't.