The Unexpected Update (Post #9)

 

What do you mean, unexpected? You've been promising us an update for months, girl! Uh-huh, I know, I know, sorry — life got in the way, as it so often does.  However, I've given myself permission to eat chocolate while blogging, so hopefully I'll be posting with a bit more regularity. 

I had no idea just how cherished a gift my prize of a $100 gift card each month from Jacek Chocolate would be. It's almost like God knew I'd need more really, really good chocolate than usual!

What I mean by unexpected is that the contents of this blog may come as a surprise to most of you. I promised you authenticity, and I meant it! However, first, let's bring you up to speed. 🏎️

At the end of June, I posted about Ken's journey thus far, which has been anything but easy. I then posted a personal update on my blog (which can be found here) in mid-August. Unfortunately, despite switching chemo protocols from CAPOX to FOLFOX, Ken continues to struggle with debilitating side effects, which is not exactly the most thrilling blog content.

Due to the awful side effects and the fact that chemo is actually not proven therapy for appendix cancer, Ken has stopped chemotherapy. His last scan was clear, and we trust God with the future!

I'm so grateful for incredible health care workers like Dr. Makhdoom. She was working the Saturday when Ken came in for extra fluids at CCI and thought he looked rather terrible. (I personally believe she did NOT want him back as a patient on her unit, but...🤷🏼‍♀️) She arranged for Ken to become a patient of the virtual hospital. No, this is not tele-health, it's a program provided by the province:

    If you or your loved ones ever need hospital-level care, you may be eligible to receive it from the comfort of your own home through a Virtual Home Hospital. Virtual Home Hospitals allow eligible patients the opportunity to leave the hospital early and may even avoid admission to a physical hospital by moving the care you need to your home or other safe location.

("...may even avoid admission to a physical hospital..." See? I may not be wrong about Dr. Makhdoom! 😇)

A really cool Point of Care blood testing monitor used by the community paramedics.

Each new patient is assessed by a physician, then placed under the care of a nurse practitioner. However, the actual care is administered by community paramedics. We met some wonderful people, as Ken required IV fluids every couple of days, and oh, the stories they told! (No privacy breaches occurred during the course of our conversations, promise!) Our favourite was the paramedic who owned a rental property with a tenant who refused to move out. Unfortunately, he also refused to pay rent. Instead, he threatened to burn down the house...which he did, using a Molotov cocktail. Fortunately, though he lacked accuracy when throwing his bomb and risked losing his hand by picking it up and lobbing it at the house again, this time breaking a window and creating a raging inferno, he was unhurt. Unfortunately (for him), he forgot that life is not lived in a vacuum, and a neighbour filmed the entire escapade, from when he filled the bottle while squatting on the public sidewalk in front of the house, to when it went up in flames. Oy. A wee bit hard to deny involvement when everything is caught on film! I had to think of Proverbs 26:18&19:

Like a maniac shooting

flaming arrows of death

is one who deceives their neighbor

and says, “I was only joking!”

Yeah, tell that to the cops, buddy...😏

In retrospect, some of Ken's challenges were probably linked to POTS, a diagnosis finally made during his stay at the Grey Nuns Hospital (GNH). POTS is described on the Cleveland Clinic website as:

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes a number of symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness, and fatigue. While there’s no cure, several treatments and lifestyle changes can help manage the symptoms of POTS.

Wait, he stayed at the Grey Nuns, as in, longer than the usual 12-hour wait in the waiting room, then the 10-hour wait in the hallway, followed by a 6-hour wait after you've seen the doctor, waiting for test results? Yup, he sure did. Though he was only in the waiting room for a few minutes (psych patients are fast-tracked) followed by two days in ER. Unfortunately, chemo side effects are not limited to physical symptoms; indeed, up to 50% of patients report challenges involving their mental health. 😕

Phew! Man, that was hard to type! No, not physically, but because I struggle to portray my incredible husband as "less than." Less than extremely high-functioning (the only way I'd known him), less than capable of retaining ridiculous amounts of information in his brain without a day timer (!!), less than the rock that everyone else leaned on during their time of trouble. But I've come to realize that having a mental health crisis does not make a person "less than." And once more for the people at the back:

Having a mental health crisis does not make a person "less than!"

Now I have your attention, don't I? 😁 So just to give you a bit of context, when I was going through chemo, I also found the mental health side effects troubling. (Wow, understatement much? 🤥) I blogged about it here. However, every. single. person. has a different chemo experience. I was able to get through with some extra meds, therapy, and mega amounts of prayer. Oh, and chocolate...of course.

Unfortunately, Ken's experience was considerably worse than mine, and staying at home was not an option. Though we both battled intrusive thoughts, his were relentless and were continuously intensifying in acuity. The Google AI Overview defines them this way:

"An intrusive thought is an unwelcome, upsetting, and involuntary thought, image, or idea that enters your mind, often without warning and regardless of your values."

Did you notice the part in bold print? Everyone can get intrusive thoughts, even you. The Google AI Overview of intrusive thoughts and chemo puts it like this:

"Intrusive thoughts—unwanted thoughts of stress or trauma—are common during and after chemotherapy, often involving fears of cancer recurrence. These thoughts are a normal part of coping with a stressful event, but can increase anxiety and distress."

Okay, this is a test; without looking, what are the first two words in bold print in the last paragraph? ARE COMMON. Did you remember correctly? 🤔

While watching Ken battle these side effects was extremely difficult, the whole situation was exacerbated by the knowledge that he was staying on Unit 93 at the Grey Nuns...a psych ward. 😣 Isn't that sad? I mean, life is challenging enough without worrying about what other people are going to think about you! Like a Stage 4 cancer diagnosis and complications of chemotherapy aren't enough stress? 🫤

So what was it like on Unit 93? Well, pretty awesome, actually. I was pleasantly surprised bowled over by the whole experience. (No, not literally, I'm too klutzy to bowl...🤕) I don't know what your preconceptions of a psych ward look like, but mine were more than a little antiquated, probably because they were based on the black and white version of "Miracle of 34th Street," where Santa is incarcerated at a mental institution. I should have expected some improvements since 1947, when the movie was filmed. 😄

Although this photo is of St. Lo's New Hospital during the post-war period, this is the mental picture I had of a psych ward. Just a wee bit inaccurate...😆

Between his initial hospitalization for his ruptured appendix/abscess, his surgery, and his time as an inpatient at CCI, Ken had spent about 20 days in the hospital, including his days spent in the ER. However, this ballooned to 55 after his stay on Unit 93. Why so long? Well, their goal is to reduce the number of readmissions. As such, the patients are not only given medications to assist their recovery, but are encouraged to attend sessions where they are given tools to deal with their challenges. These may involve learning CBT, defined as:

CBT stands for Cognitive Behavioral Therapy, a type of psychotherapy that helps individuals change negative thought patterns and behaviors to improve their mood and manage problems. It is a goal-oriented, practical approach based on the idea that thoughts, feelings, and behaviors are interconnected. CBT is an evidence-based treatment for a wide range of conditions, including depression, anxiety, eating disorders, and chronic pain.  

What CBT is not:

• brain-washing
• a replacement for medication
• a fixed, formulaic therapy
• simply empathy or support
• a way to change someone's personality
• the best approach for everyone
• anti-Biblical

The Google AI Overview has this to say about Christian CBT:

CBT and Christianity can be integrated in a therapeutic approach called Christian CBT, which combines biblical principles with evidence-based CBT techniques to help Christians address mental health issues by aligning thoughts and behaviors with Scripture.

I found an absolutely incredible article explaining Christian CBT, which can be found here.

Below is the first paragraph:

Cognitive-Behavior Therapy (CBT) is essentially reprogramming of the heart through deliberate actions of the will. This often involves exposure in facing one's fears, reframing situations in a healthy perspective, and calling out your heart for what it is and retraining it through repeated actions. This process takes time but has proven transformative results. While CBT strategies differ from person to person depending on their situation, the goal is that you would "be transformed by the renewing of your mind" (Rom. 12:2).

Thankfully, the Grey Nun's Hospital is part of Covenant Health, a catholic institution. However, this does NOT mean that all activities have been approved by the Pope — hardly! 😄 (Pretty sure he does not know that they exist.) What it does mean is that a chaplain says a generic prayer over the intercom at 8 am and 8 pm. It means that "Spiritual Care" is offered to all patients. Covenant Health's website describes Spiritual Care as:

Our teams offer spiritual care services to all patients, residents, and families, regardless of faith, background, or tradition. We honour each person’s wishes and unique journey. 

But what I've noticed is that it creates an atmosphere of hope, where healing is anticipated, not a surprise. And this goes double for Unit 93. So what does that look like in practice?

I'm unfamiliar with protocols on other psych units, but at the Grey Nuns, it means that in addition to the morning session, there are also 1 or 2 afternoon sessions. Interspersed with these are other activities such as a group walk around the hospital (I must admit to having visions of the walls coming tumbling down à la Jericho...😂), Bingo (with candy bars as prizes), or karaoke (no, Ken did not participate. 🫣) They have fun! Of course, not everyone participates, but the prevailing mood is one of optimism and camaraderie.

Unit 93 is circled in red.

Allow me to give you a quick tour: upon entering the unit through double doors, you will see the nursing station on your left. Straight ahead is one "pod", which consists of a sun-drenched common area brightened by skylights with comfy chairs in front of a huge TV. (There is also a smaller, separate TV room, in case you don't enjoy watching sports 24-7.) Behind the chairs are rows of tables on which you'll find puzzles, games, and craft materials. This is also where the patients are encouraged to eat their meals, so they can socialize rather than eating in their rooms. Circling this common area are the patient rooms, most of which are private, one-patient rooms. They are outfitted with the usual hospital bed (though the mattresses are superior to those in the post-surgery unit, as per Ken 😊), a built-in desk, and a closet. Each room has its own bathroom. Not quite the image I had in mind...🙃 Oh, and Ken's room had a huge, and I mean huge, (5'x5'?) window facing west. He thoroughly enjoyed watching the sun set each night. According to our daughter's colleague, who works at psych units in other hospitals, the care given at GNH is the best in the city. I believe it. No one wants to need care on the psych unit, but I'm so glad it's available. During Ken's stay, I saw massive improvements, not only in him but in other patients as well. The goal is to discharge patients back into the community with the necessary supports, and this is evident in every action taken. During the course of each nurse's shift, the patient's assigned nurse would sit down with them and check in on how they are doing. They also had an OT and a rec therapist, as well as a social worker to provide support. 

Celebrating our 30th anniversary at the hospital...with Harvey's!

So, where was God when Ken was in the hospital? 

Well, thankfully, He is omnipresent and was able to be with Ken, while also being with the rest of the world. 😇 Yes, He was with Ken; we could feel His presence.

He was there where Ken's parents would visit, and his Mom would read inspirational stories aloud for hours. 

He was there when friends would call to pray over the phone. 

He was there when Ken received his ketamine infusions and didn't suffer any horrible side effects. 

He was there when I despaired of ever having my husband back. 

He was there when Ken was discharged because he was doing so incredibly well!

Oh, he's not out of the proverbial woods; thankfully, it's autumn and the woods are gorgeous! 😊 He continues to have weekly CBT sessions via Zoom as well as IM (intramuscular) ketamine injections at a colleague's clinic. 

 

Ken's parents were an amazing support. Here we're celebrating Ken's birthday with Lederkuchen.

Watching Prayer Meeting together in Ken's room.

Ken's not the only one learning this past month. I was watching YouTube, learning how to install insulation, vapour barrier (don't forget the nasty acoustical sealant), and Gyproc. Then I watched even more YouTube and learned how to mud/tape/mud, sand, then mud, then sand, then mud, then sand, then...😬 I'm not the greatest at this part, hence, my deep affinity for wallpaper. Busy, busy, textured wallpaper. 😁 (When we had the siding on the house redone, we replaced our front door and sidelight with a larger front door, then removed another door, which is no longer necessary, given its proximity to the sunroom exit. This needed to be finished on the inside and since no one told me I couldn't, I tried!)

Do me a huge favour, please, and do NOT look too closely!

I also learned Biblical CBT:

"Give all your worries and cares to God, for He cares about you."

                                                                                         1 Peter 5:7

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

                                                                                 Philippians 4:6-7

"So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand."

                                                                                      Isaiah 41:10

I've shared songs by Danny Gokey in the past. He lost his wife after she had surgery due to a congenital heart condition when they'd been married only 4 years. When he sings about trust, it means more than someone whose idea of "trial" is breaking a nail or losing their favourite (insert name of tool here). However, there's one line in the song I've posted below that I'm still struggling to sing with conviction: "I'll count it joy when I am tested." Hmmm, yeah, not there yet, but I'm still working on it! For now, I'm just grateful for the moments of joy I've been given, as they're a good reminder that God is good, even when life isn't. 

"Stay Strong"

I've been waitin' for breakthrough, I've been prayin' for change

I know You'll work it all for good but how long will it take?

I've been asking for healing and I'm not gonna lie

I'm ready for the miracle, God, let it be this time

But if I never see the promise on this side of the grave

My hope might be shaken but my faith will never break

Because I know the day is coming when You'll right all of the wrong

So I'll praise You in the waiting and my faith will stay strong

God, You taught me to trust You, You showed me how to believe

You're the author and the finisher of what You start in me

So I'm not gonna doubt it, I'm gonna hold onto peace

'Cause if I have You and nothing else, I still have everything

I'll count it joy when I am tested

'Cause You bring beauty from my pain, it's never wasted

But if I never see the promise on this side of the grave

My hope might be shaken but my faith will never break

Because I know the day is coming when You'll right all of the wrong

So I'll praise You in the waiting and my faith will stay strong

Because I know the day is coming when You'll right all of the wrong

So I'll praise You in the waiting and my faith will stay strong

Will stay strong