We are NOT having fun! Post #7

The calm before the storm. 🍪 

(Volunteers come around with coffee, juice, and cookies. Ken loves cookies. 😋)

Whoo boy. I'm kinda regretting promising authenticity. 😏 Don't let Ken's smiling face fool you, the past week has been he🏒🏒. (H-E-double-hockey-sticks.) When I was going through chemo, I affectionately dubbed the first week post-infusion "He🏒🏒 Week," referring to the brutal training of Navy Seals. Unfortunately, that label also applies to Ken. 

The infusion went well, though the pharmacy was running behind, so we had a late start. Then Mr "My-veins-are-great" decided to allow his veins to play roly-poly-olly, and a second nurse had to insert his IV, since the first one gave up. 🙄 Now, in all fairness, she only tried once; they're supposed to try twice before getting a colleague. Our nurse, I'll call her Sharon (not her real name), was interesting. She also works in the ER at the Royal Alex, which caters to a rough crowd, so perhaps she's adopted some of their crustiness? Or perhaps it's just the ER nurse thing - we all know they're rather, um, interesting...? (Right, Marigan? 😁) Anyway, she didn't inspire a lot of confidence at first, but we came to appreciate her dry wit as the hours wore on. And yes, it took hours. We arrived just before 1:00 and left at 4:30. The good thing about not being the patient is that you can go grab a snack!  The bad thing about being the patient (besides everything, of course) is that you have to walk miles to find a public restroom. (No sharing washrooms with the patients!)🤨

"Hope is what takes the power back from a disease that has taken so much, 

from so many. And hope is what we do best." 

This is on the wall in one of the hallways at CCI.

So, how did it go? Well, after his infusion on Thursday, he felt relatively fine. Friday wasn't too bad; he was feeling "off" and tired, but was still able to function. On Saturday he drove to Beaumont...twice...which pooped him out and may have contributed to his crash on Sunday. 

The side effects of CAPOX are delightful; they read somewhat like a list of potential methods of torture:

• loss of fingerprints 
• diarrhea (It's okay - you only need to go to the hospital if you exceed 7-10 bowel movements per day. 😲) ✅
• nausea ✅✅✅
• numbness, pain, tingling, or other unusual sensations in the palms of the hands or bottoms of the feet 
• pain, blistering, peeling, redness, or swelling of the palms of the hands or bottoms of the feet 
• pain, redness, swelling, sores, or ulcers in your mouth or on your lips ✅
• stomach pain 
• unusual tiredness or weakness ✅✅
• vomiting ✅

Those are the side effects of the capecitabine tablets he takes every morning and evening for two weeks following his infusion. He then gets one week off. There are six tablets, which, when one is nauseated, are a bit of a challenge to get down. 

I placed all Ken's chemo pills in this daily reminder...while wearing gloves. 

I'm not allowed to touch them.

The side effects of oxaliplatin, the second drug he receives via infusion every three weeks, are even more delightful:

• numbness, burning, or tingling in the fingers, toes, hands, feet, mouth, or throat ✅
• pain in the hands or feet 
• increased sensitivity, especially to cold ✅
• decreased sense of touch 
• nausea ✅✅✅
• vomiting ✅
• diarrhea ✅✅
• constipation 
• gas ✅✅
• stomach pain 
• heartburn
• sores in the mouth ✅
• loss of appetite ✅✅✅✅✅
• change in the ability to taste food ✅✅
• weight gain or loss ✅✅✅✅✅✅✅✅✅✅
• hiccups ✅
• dry mouth ✅✅
• muscle, back, or joint pain ✅
• tiredness ✅✅
• anxiety ✅
• depression ✅
• difficulty falling asleep or staying asleep ✅✅
• hair loss (It's hard to tell! 😄)
• dry skin ✅
• redness or peeling of the skin on the hands and feet
• sweating
• flushing

So, anyone keen to join him? No? Good! Ironically, Ken has a colleague who is receiving the same chemo, though for a different type of cancer. He began his treatment just weeks before Ken, and...he's still working!! Ken isn't sure how that's possible. 🤷 It just goes to show that everyone responds to chemo in their own way. 

Sunday arrived, and with it, the actual start of "He🏒🏒 Week." Although Ken has only thrown up a handful of times, he's been battling constant nausea. This is a common side effect; not many people escape it. However, Ken has always been so stinkin' healthy that I think he's only thrown up twice in 30 years. He rarely gets sick! I, on the other hand, had hyperemesis gravidarum and required medication with each of my three pregnancies; hence, I have plenty of experience with nausea and its cousin, the Great White Telephone. 🚽

Nausea can be debilitating, and this has certainly been true for Ken. Unfortunately, many of the antiemetics, medications that control nausea, are also sedating, like Gravol. He's taking two prescription medications, metoclopramide (Maxeran) and ondansetron (Zofran), as well as Gravol and Seroquel at night. If you look up drug interactions on the interwebs, it warns against this combination, but at CCI, they write their own rules. Seriously, though, if it means the difference between continuing treatment or not, it's worth experimenting. The challenge has been getting Ken to take the meds on MY schedule. Yes, you read that right, it's MY schedule, not Ken's. After several days of "I think I took such and such medication..." I put my foot down and took over med admin, following a MAR (Medication Administration Record) I'd drafted earlier. I like to think it's made a huge difference, but the reality is that he's into week 2, which means he should be feeling better. 😁 However, that doesn't stop me from claiming responsibility! Thankfully, as the nausea subsides, he's also had a bit more energy. During 

He🏒🏒 Week he slept most of the day and all night. Chemo sucks. 

This isn't exactly a glowing blog post, after all, Ken's toxic, not radioactive. (Sorry, not sorry! 😆) It's been a very, very difficult week. Seeing my formerly brilliant, ambitious, workaholic hubby turned into a retching rutabaga is not my idea of a good time. And I'm only watching, not living it! So, where is God in all of this? Right here. In the middle of it.

                                          

A diagram depicting the Internal Family Systems Theory

I was introduced to the Internal Family Systems Theory by my therapist, Kirsten. (ICU-PTSD is a thing, y'all.) She noticed that I often spoke of being a Pollyanna and dealing with Negative Nelly. Over the years, we've "identified" various characters in my internal family, such as Precious Priscilla, Practical Patty, and Sarcastic Stan. I thought that I'd banished Carson Noma, but alas, he has come out of retirement. 🙄 (Yes, I am aware that this may sound absolutely bonkers to most of you - hear me out!) When we chatted a couple of weeks ago, she asked me where my faith fit into my internal family. I choked back tears as I realized that I had overlooked a pivotal character in my story. Her name is Faith. She doesn't have a clever alliterative synonym; she is simply Faith. In my mind's eye, I could see her holding me up, but not only me, she was also holding up all the parts that were crumbling under the stress of our current journey, like Positive Pollyanna and Dolorus Delores. When I closed my eyes, I could almost feel the support and strength of her embrace, and as I marveled at the feeling, I "felt" a teardrop fall onto my arm — she was crying. 🥹 Not only was she holding me both up and together, but she was sharing my grief. It was quite an epiphany, an experience that made me so incredibly grateful that I don't have to walk this road on my own strength. Oh, I always knew my faith was undergirding every thought and action, but I'd never really thought about its role. Faith is unassuming, beautiful, but not showy. It lends hope when the way ahead looks unimaginably difficult and promises joy amid sorrow. Faith is not religion; it is a relationship with God. It's this relationship that gives me the strength to continue in hope. 💗

I recently heard the song "Strong" by Anne Wilson. I was initially put off by the instrumentation. It's not a ballad, and it certainly won't put you to sleep, but the message is incredible. You can watch it here: 

Strong, try to make 'em all think I'm strong

Yeah, the face I keep putting on says I ain't tired

But these tear-stained eyes ain't lying

'Cause hard, nobody told me life could be so hard

A weary soul with a worn-out heart that's barely beating

But every time I get that feeling

I hit my knees with my hands held high

Saying, "Dear Lord, Jesus, you know I can't do this on my own

I can't do this on my own."

Lord knows I've tried, but I'm good at falling down

Thank God you're good at picking me up off the ground

The world's gonna try to break me

But I know the One who makes me

Strong

Strong, like my daddy always told me so

There's a place you can always go when you got nothing

And then he handed me the one thing

That's strong, doesn't matter how old it gets

There's power in the words in red in this old bible

And when I'm desperate for revival

I hit my knees with my hands held high

Saying, "Dear Lord, Jesus, you know I can't do this on my own

I can't do this on my own."

Lord knows I've tried, but I'm good at falling down

Thank God you're good at picking me up off the ground

The world's gonna try to break me

But I know the One who makes me

Strong

Oh-oh, strong

I'm strong when I got nothing

I'm strong even when I'm weak

'Cause the strong arms of my Savior

Are holding on to me

I hit my knees with my hands held high

Saying, "Dear Lord, Jesus, you know I can't do this on my own

I can't do this on my own."

Lord knows I've tried, but I'm good at falling down

Thank God you're good at picking me up off the ground

The world's gonna try to break me

But I know the One who makes me

Strong

Oh, You make me strong

Oh, this world ain't gonna break me

'Cause I know the One who makes me

Strong