Tied to the Bottle (Post #8)

 

Starting upper left, going clockwise:

The entrance to The Cross Cancer Institute (CCI)

CCI was built in 1968; it's older than both Ken and me!

Ken is waiting for his appointment with Dr. Zhu.

I found on-street parking, but because it's only for an hour, 

I'm not sure it was worth the stress! 🤨

Sorry for the lack of communication; life has been a bit turbulent lately. 😵‍💫 

And that would be the biggest understatement of my life. 🫤 

While I was going through my own treatment, Ken would often say that it's harder on the caregiver than the patient. After Ken's second infusion, I asked him if that was still true. 😇 "Come on, that was a stupid comment." Actually, it was more like "Khum ahnnn, thad was a 'tupid commennnnnt."  No, he wasn't drunk; he was in the midst of Hell Week. Yes, it occurs every time, and no, it doesn't usually improve with each infusion; rather, the opposite. 🫤 It is extremely difficult to watch loved ones go through chemo, especially if you've gone through it yourself, however, I can walk to my greenhouse (for a few minutes), read a book (within earshot), or watch a show on Britbox (Mini vacation, anyone?) and forget about chemo...at least for a teeny, tiny while. When you're the patient, you don't have that luxury. You are always the patient, and it's relentless.

Ken's first infusion wasn't fun, but we muddled through it. However, the days following his second infusion were awful. He became severely dehydrated due to the side effects and required hospitalization.

Top photo: Waiting for his treatment to begin. 

Bottom left: Ken was messaging with someone also undergoing cancer treatment.

Bottom right: We stopped by an exterior store on our way home, knowing that such an outing would not be possible in the days to come. (They're almost ready to begin re-siding our garage, thanks to the garage fire in November.)

Following his second infusion on Friday, May 15th, Ken only felt okay until the next day. By Saturday evening, he was really struggling with nausea, though he didn't vomit. By Sunday, he was miserable. Unfortunately, when you exceed 10 trips to sit on "the throne 🚽," you feel anything but royal, more like suffering from a royal pain in the butt! Literally. 😣 This continued through Monday and Tuesday, with Marigan and me growing more concerned each day. Immodium is no match for CAPOX chemo! Unfortunately, Ken was unable to keep up with his fluid loss due to his nausea.

During a conversation with Donovan while he was in medical school, I learned a bit about delirium. The MedlinePlus website describes it thus:

What is delirium?

Delirium is a mental state in which you are confused, disoriented, and not able to think or remember clearly. It usually starts suddenly. It is often temporary and treatable.

There are three types of delirium:

• Hypoactive, when you are not active and seem sleepy, tired, or depressed
• Hyperactive, when you are restless or agitated
• Mixed, when you change back and forth between being hypoactive and hyperactive

I recall Donovan's shock and how disturbed he was when he observed a patient with delirium. His instructor had warned the students that learning about it in a classroom and viewing it firsthand are very different; Donovan concurred. Due to patient confidentiality, 😁 I will not share the particulars of Ken's symptoms; however, below are excerpts from the AI overview result of a Google search for "dehydration induced dehydration."  

Dehydration can induce delirium, a state of sudden confusion and impaired thinking, particularly in older adults. It's a serious condition that requires prompt medical attention. Delirium caused by dehydration is often reversible with proper treatment, which includes addressing the dehydration and managing any underlying causes. 

Understanding Dehydration and Delirium:

Delirium:

A sudden and temporary change in mental status characterized by confusion, disorientation, and difficulty focusing. It can manifest as agitation, restlessness, or, conversely, lethargy and decreased awareness. 

Dehydration:

A lack of sufficient fluids in the body can disrupt normal bodily functions, including brain function. 

Connection:

Dehydration can lead to delirium due to its impact on brain function and blood flow to the brain. Decreased blood volume from dehydration can reduce oxygen and nutrient delivery to the brain, causing it to malfunction. 

 

Symptoms of Dehydration-Induced Delirium:

Sudden confusion and disorientation: Difficulty understanding surroundings, forgetting recent events, or not knowing where they are. 

Changes in behavior and mood: Agitation, anxiety, fear, depression, or a short temper. 

Difficulty focusing: Trouble concentrating on a conversation or task. 

Cognitive changes: Impaired thinking, difficulty with speech, or memory problems. 

Other signs: Dry mouth and skin, sunken eyes, decreased urine output, and in severe cases, hallucinations or delusions. 

By the time we'd returned to the Strathcona Community Hospital on Thursday, Ken had reached the end of the list of symptoms, including the "Other signs." But I'm getting ahead of myself...again. ☺️

Ken awoke on Wednesday, May 21st, looking absolutely awful. He was less than keen to go to the hospital, having just been there a couple of months ago for his surgery. Thankfully, the Cross has a Triage Line for patients to call whenever they have a concern. After relaying Ken's symptoms, which at the time were sunken eyes, dry skin, and other bodily irregularities, the nurse on the other end said, "You know what I'm going to tell you, right?" "Oh, I know; he just needs to hear it from someone other than his wife." ☺️ So off we went to the Strathcona Community Hospital. Upon arriving at the ER, the triage nurse was not impressed when I kept answering the questions he was putting to Ken...until he realized that Ken was a less-than-reliable historian and would just turn to me and ask me to answer anyway! 😁 They gave him some IV fluids and ran some blood tests. Unfortunately, they were unable to run any urine tests...which should have been a blazing red warning sign, but no, Ken snowed them. I think they were awed that he was a neurologist (insert eyeroll here) and were therefore more inclined to give him the benefit of the doubt. When they told him that they would only let him go home if he promised to continue drinking, his reply was, "I can do that!" Um, yeah, no. Actually, that would be a hard no. 🙄 In retrospect, it was probably part of his delirium, but he thought he was consuming vast amounts of fluids when he was only taking sips from various glasses, bottles, etc. "Well, maybe you didn't have anything he felt like drinking, Heather!" Yeah, that would also be a hard no. Here is an incomplete list of the items in his "bar."

• Body Armour Sport Drink in multiple flavours
• Vitamin Water in multiple flavours
• Ginger Ale
• Sprite
• Remedy Kombucha in various flavours
• San Pellegrino in various flavours
• Cranberry juice
• Orange juice
• Mango juice
• Raspberry juice
• (No apple juice, he associates that with being ill as a child and refuses to drink it!)
• Joyburst drinks in multiple flavours
• Sparkling water in multiple flavours
• Milk
• Water, except he doesn't like to drink water 🤷🏼‍♀️

You think we offered enough choice? 🤔

Facebook post from May 21rst, the day of our first ER visit.

We returned home, and Ken continued to decline. The next morning, during a fleeting moment of clarity, Ken told us to call 911, as he was unable to walk unsupported. That's when I knew it was bad. He wanted to go to the hospital?

No, I didn't stand around taking photos; this is taken from the doorbell cam. 😊 Pro tip: stretchers don't wheel well through gravel. 😬 

They took him back to the Strathcona Hospital, and I followed in our own vehicle. The ER doc on duty just happened to have worked with Ken 11 years prior, during several of our trips to Hinton. When Ken's condition continued to deteriorate despite more IV fluids, he called Ken's oncologist, Dr. Zhu, who was at home, sick. Thankfully, Dr. Zhu is as dedicated to his job as Ken is to his and somehow managed to find a bed for Ken at the Cross. According to the ER doc, this was "a minor miracle." So thanks for praying! Granted, he wasn't transferred until 11:45pm, but he got there! 

It's amazing how God sends his angels to care for you when you're incapable of doing so yourself. I received a text from a friend asking if she could bring me a snack on the evening of our first visit to the ER. She brought me a snack, alright...for a family of four! (I ate it over both days we were in the ER.) Not only was it delicious, but knowing that she was not just praying but supporting us in a tangible way meant so much. "Why didn't you call me? I would have brought you something!" Yeah, well, when you're watching your husband decompensate, the last thing you remember to do is call someone to ask for food. This was a lesson to me: don't wait for someone to ask for help, just do it! 👟 I know I'm not the only one to have benefited from her love, but I think she'd be embarrassed if I mentioned her by name, so I'll just say that her name starts with "T"...and ends with "racy." 😇

Facebook post from May 23rd.

According to my Google Timeline, I have visited the Cross 73 times, but my interaction with the admitted patients was limited to walking past them as they smoked/vaped outside the entrance. The vibe at the Cross is simply different. In the words of one of the docs, "I still work here because it's the one place where compassion hasn't dried up." Don't get me wrong, we've experienced wonderful care in other hospitals; however, the staff are usually run off their feet, and let's face it, the public has become a wee bit more entitled. ("I'm so sorry I'm late getting your glass of water; the patient across the hall just coded." Actual words said to an irate family member of a patient in the ER. Seriously?!? Do better. 😠) 

Ken was on Unit 30 under the care of hospitalist Dr. Makdoom. Hospitalists are doctors (often family doctors) who care for inpatients when specialized care isn't required. Dr. Makdoom is fantastic!! Not only is she an excellent communicator, but she has that extra sense all good doctors have; you know, the one that enables them to see past your bluffing. Much to his dismay, Ken wasn't able to snow her! 😏 Upon arrival, Ken was put in a corner room about as far away from the nursing desk as one could get. That lasted a day. He "required a bit more observation," so they moved him to the room right beside the nurse's desk, which is the hospital equivalent of having your desk moved to right beside the teacher's. I think this is probably as close to being a troublemaker as he's ever been! I'd love to tell you about some of his shenanigan's but my desire to stay married is stronger. 😆 However, I will say that the Pope did not visit him, no matter what he may have told you! (Pope Leo had been in the news a lot.)

Facebook post from May 26th.

One of the greatest challenges in dealing with a delirious individual is knowing when they're "with it" (rarely) and when they're not (usually). This challenge was exacerbated by the fact that Ken is so stinkin' smart, and I wasn't used to being married to the equivalent of a hilarious toddler or dementia patient! 😁 I found it interesting that despite not being himself, Ken continued to be super sweet and kind to the staff. Like, over the top sweet. "You are the greatest nurse ever!" and "Wow! What a fantastic idea! You guys here at the Cross are just brilliant!" It was rather entertaining, though it did make me wonder if patients with delirium exhibit their true personality. If so, I have concerns should I ever suffer from delirium! 😬 Perhaps I should just apologize preemptively? 

Over the next week, Ken slowly began to improve. He had been calling me from his landline, as he was forbidden to have his cell phone (long story I'm not at liberty to share...😜), and I think I sprung a leak when he called on Monday morning, the 26th, and I realized that he was "back." What. A. Relief. (He wasn't completely back to normal; that didn't happen until June 2, a week later.) They continued to administer fluids, potassium, and anti-nauseants until he was given an overnight pass on Thursday, a week after being admitted. If all went well, we would return on Friday morning for more tests and his formal discharge, and again on Saturday for more fluids. Dr. Makdoom was amazed at his progress. Apparently, when he was admitted, she told one of her medical students, "He's not coming out of this healthy." She was certain he would require a kidney transplant or dialysis. Never underestimate the power of prayer! 💗 

Facebook post from May 30th.

Ken had the usual blood tests followed by an appointment with Dr. Zhu on Wednesday, June 4th. He should have received his third chemo infusion on the 5th, but the decision was made to cancel it and switch to the FOLFOX regimen instead. This required the insertion of a port, a small implantable device through which chemo is administered. The Cleveland Clinic describes it as:

A small, implantable device — about the size of a quarter. It goes under your skin, and a thin silicone tube connects the device to a vein.

Many people need ports for medical care, especially those undergoing cancer treatments. These devices reduce the number of needle sticks necessary for blood draws, infusions, and injections. A port can help make chemotherapy safer and just a little more comfortable.

Facebook post from June 5th. My definition of "soon" 

may not be the same as yours...🤷🏼‍♀️

This is the model used for teaching about the procedure and how to take care of it. They didn't mention a name, but I think they should call her Portia. 

(I'll show myself out...😄)

Facebook post from June 13th. 

Ken had his first FOLFOX infusion on June 16th. The couple beside us were newbies and watched us unpack with great interest. Okay, so perhaps using a rolling carry-on suitcase and overnight bag is a bit unusual, but I've never been able to figure out how the people simply carrying a small bag or purse manage. Where do you put your snacks and drinks? What if you get tired of the only book you brought along? Then what? You just sit there, bored? Or worse, what if the battery in your phone goes dead and you don't have a charger!?! 😱 

This infusion looked a bit different than the first two, with Ken receiving leucovorin (folinic acid) and oxaliplatin via IV into his port, followed by a bolus of fluorouracil. (A bolus is a syringe of fluids or medication given directly into the patient's vein.) Then they hooked him up to a bottle of fluorouracil and sent him home. 🍼  

Photographs of a pump similar to what Ken uses, at various stages of emptying.

Throughout our collective cancer journeys, I've often had moments of utter disbelief, positive disbelief, that is. Seriously, though, who wakes up one morning and thinks, "I wonder what would happen if I put medication into an elastic bladder and attached it to a tube inserted into a patient's chest?" 🤔 The mechanism sounds too simple to work! The following is the AI Overview from a Google search for "How do elastomeric pumps work?"

Elastomeric pumps, also known as balloon pumps, are small, portable devices that deliver medication intravenously at a controlled rate. They work by utilizing the pressure from a deflating balloon-like reservoir to push the medication through tubing and into the patient's vein. These pumps are non-electronic and do not require gravity or external power sources. 

Isn't that cool?!? 🤯 There are rate limiters to ensure the flow is correct; Ken's pump infuses at a rate of 5ml (1 tsp) per hour. He wears this pump for 46 hours, and then I detach it and dispose of it in a special bag, and we bring it along for disposal at our next appointment. (Yes, they trained me, and no, I still don't want to be a nurse!) Chemo medications are highly toxic, so we were given a spill kit, just in case of leakage, kinda' like the one pictured below. 

Tomorrow is Ken's second FOLFOX infusion. The side effects of FOLFOX are much, much more manageable compared to CAPOX; we are so relieved! Even with the inconvenience of being "tied to the bottle," it's a much better fit for Ken. 🍼 The only downside is that the infusions are every 2 weeks, instead of 3. Oh, and then there's the whole "don't hook your tubing on something and rip your port out of your chest" thing, which is a bit of a downer. 

Teaching me how to pretend I'm a nurse.

But life goes on. The days of early alarm clocks, a busy day at the clinic, and late nights filled with yet more work are just a blurry memory. I enjoy 2 cups of coffee most mornings now! 😊 Of course, I much prefer our former life, before cancer ambushed us again. 😔 

Today is my Alive Day; it's 3 years ago today that my post-surgery recovery went sideways and I got a wee bit too close to the pearly gates. In the time since what feels like another lifetime, only one thing has remained unchanged. Jesus. A song popped up on my playlist recently: "Still Waters" by Leanna Crawford. The lyrics are pretty incredible and have settled my soul rather frequently over the past tumultuous weeks. I pray it blesses you, too. 💗

Great Aunt Maurine said at a hundred and three

"Write scripture on your heart for when you need it

'Cause anxiety hates Psalm 23

So just say it to yourself 'til you believe it"

And I'm feeling like I'm needing it right now

[Chorus]

The Lord is my Shepherd, I shall not want

He leads me by still waters 'til my fears are gone

Though I walk through the valley of the shadow of death

Oh, I know You are with me, my Father, my friend

Your goodness and mercy will follow me all of my days

I know by Your still waters I'm safe

[Verse 2]

Lord, I believe You can set mе at ease

Turn this broken piеce in me to peace and quiet

I know there's power in Your word

So I'll say it over and over 'til my soul's reminded

[Chorus]

The Lord is my Shepherd, I shall not want

He leads me by still waters 'til my fears are gone

Though I walk through the valley of the shadow of death

Oh, I know You are with me, my Father, my friend

Your goodness and mercy will follow me all of my days

I know by Your still waters I'm safe