Looking a wee bit sleepy as we wait together in pre-op.
There's a line on a poster in the Visitor Lounge just outside Unit 42 that sums up the last couple of days well:
Significant, indeed. 😬
All smiles!
Ken and I arrived at the Grey Nuns on Monday, March 17, at 6:15 am. (See, I WAS only joking about calling him an Uber! 😊) We arrived at the pre-op unit on the second floor where Ken was given a gown to change into, and the cutest "grippy socks." (My kids wore these types of socks almost exclusively growing up, hence the nickname.) A nurse came in to go over a checklist with Ken and then it was time for him to go down to the OR. It is a weird feeling knowing that your husband is about to be carved and marinated...🤔
1. Friends brought me treats! 2. I set up camp in the cafeteria with my
garden-planning binder and bag of seed packages.
3. Second Breakfast. 4. Marigan joined me during her break.
I was looking forward to uninterrupted time, as the whole planting planning process can be rather time-consuming. Ha! Did I say uninterrupted? Yeah, no...my phone was blowing up with messages from all around the world, literally. I received a beautiful message from the daughter of our former babysitter who is living in Egypt, and of course, messages from family in Bolivia and Mexico. Oh, don't get me wrong, this was not a bad thing, though it did make it difficult to pretend that I was just hanging out, not waiting for my husband to come out of surgery. 🫣
I popped over to Canadian Tire to buy more seeds and treated myself to Second Breakfast at McDonald's. (Second Breakfast is a thing at our house and occurs when the first breakfast is too early and you risk becoming hangry (hungry+angry) before lunch.) Friends made sure I wouldn't forget to eat or drink and brought me a delicious smoothie, fresh strawberries along with other treats, and a large (as in Venti) latte from Starbucks which gave me a welcome caffeine boost. This was greatly appreciated, as my appetite disappeared as time wore on.
Around 10:00 am, I realized that my wish for a "Where's the cancer?" surgical miracle was unlikely. I must admit to some disappointment; it would have been SO cool! And doesn't everyone dream of being a case study written up in the New England Journal of Medicine? No? Just our family? Weird...😁
And so the hours passed. I spent some time in the chapel once I realized that garden planning would not be happening; for some reason, I couldn't concentrate! 🤷🏻♀️ This was a great place to be as I had the whole place to myself. 🙏🏻
Just after 2:00 pm, I made my way to the Visitor Lounge just outside Unit 42, the unit to which Ken would be brought from the recovery room. I had called earlier and they suggested checking in around 2:30 pm, as they thought he should be settled in and ready for my visit by then. Unfortunately, 2:30 came and went and there was no news. That was a bit nerve-wracking and I could feel my thoughts getting a bit squirrelly, so I popped in my earbuds and cranked the music, listening to "When My Heart Is Overwhelmed," by The Raynes Family. You can find it here.
In this dark place of fear, I look for refuge,
In this tumult and this storm, I look for rest,
I seek for the shadow of Your wings,
Lord, the peace You give is best.
When my heart is overwhelmed, lead me higher,
To the Rock where I know that I can stand.
You're my strength and my salvation, my strong tower,
And I'm held in the palm of Your hand.
I'll sing praise unto Your name,
And Your goodness I'll proclaim,
Even when the waves of fear are all around,
When I am overwhelmed I'll run to You.
I'll not yield to the stronghold of worry,
I will cling to the promises You've made,
You are Almighty and You change not,
And these trials in my life reveal Your grace.
When my heart is overwhelmed, I'll run to You.
Despite years of therapy, I'm still not great at identifying my stressors and even worse at expressing how they make me feel, so Romans 8:26 is a Bible verse that has often brought me comfort:
"In the same way the Spirit [comes to us and] helps us in our weakness. We do not know what prayer to offer or how to offer it as we should, but the Spirit Himself [knows our need and at the right time] intercedes on our behalf with sighs and groanings too deep for words.
Amplified Bible
I quickly run out of fingers and toes when I try to count the times I've turned to music to help me gather my scattered thoughts and pray for me. I can't imagine a world without music!
Marigan joined me after her shift ended and finally, at 4:27 pm, I saw them roll Ken past the lounge and onto Unit 42. What a relief! Unfortunately, my relief was rather short-lived; he looked pretty grim.🤕 His skin had a yellowish cast and he looked as close to "stoned" as he'll ever get. (Hopefully...😁) Ken has Gilbert Syndrome: "a common, harmless liver condition in which the liver doesn't properly process bilirubin. The most frequent sign of Gilbert Syndrome is an occasional yellowish tinge of the skin and the whites of the eyes as a result of slightly higher levels of bilirubin in the blood. Gilbert Syndrome requires no treatment." Source: Mayo Clinic He looked like he was trying to impersonate a banana! Thankfully, his colour was much better by the next day.
Because Ken was cytotoxic, we had to gown,
glove, mask, and shield up. It was a bit warm. 🥵
Marigan and I chilled boiled in his room while he dozed. Our nurse, Paula, was fantastic and inspired confidence which was a huge comfort; I'm so grateful for nurses! By dinner time I had been awake and on the go for 14 hours on precious little sleep, so when it became evident that Ken would not miss us 😵💫 we left. I arrived home to discover a note under my pillow:
Ken slipped this under my pillow before we left for his surgery on Monday morning. 😍🥰
Tuesday, PO1 (Post-operative 1) is the first day after the surgery. Ken was feeling pretty good and even managed to spend some time sitting in a chair.
The surgeon came by after lunch and told us that the surgery had gone well. While she found more cancer than shown on his scans, which is often the case, she was confident she got it all. Yay! This was fantastic news! Whatever cancer cells were left over were annihilated by the HIPEC (Heated Intraperitoneal Chemotherapy.)
What wasn't so fantastic was the list of sites where she found cancer:
1. Appendix: Obviously, that's where the cancer started.
2. Omentum: The National Cancer Institute describes this as "a fold of the peritoneum (the thin tissue that lines the abdomen) that surrounds the stomach and other organs in the abdomen." Ken actually had an omentectomy, which is the removal of the greater omentum.
3. Peritoneum: (see above) This is usually the first site of metastases for appendix cancer.
4. Bladder: Not unusual.
5. Colon: Also not unusual, though we're happy he didn't end up with a colostomy despite needing a hemicolectomy.
6. Rectum: No comment.
7. Liver: Unfortunate, though she assured us that she carved out the spot.
8. Diaphragm: Weird, but again, understandable given its proximity to the appendix.
9. Small intestine: See Diaphragm.
She also removed his gallbladder, as it was full of gallstones "It looked like it was full of gravel; like a bean bag!"
Oh, I almost forgot one of the most important parts...
...she did away with his navel! For real. 😧 I didn't realize how strange an abdomen looked without one until I saw it, though the train track of ~45 staples winding down his trunk did distract me, and I didn't even realize it was missing until this was pointed out to me. 🤨
Thankfully, his tumours must have been quite small, as his PCI (Peritoneal Carcinoma Index) was only 17/39, despite having so many sites. The PCI is determined using the diagram below; anything below 20 is considered good, with most patients scoring between 15-20.
Unfortunately, on Tuesday, he may have attempted too much too soon and didn't feel that great the next day.
On Wednesday, PO2, we finally got a peek at his incision, which is mighty impressive! Or perhaps I should say I got a peek at his incision; Ken was not keen to look. 😖 (I debated taking a few nursing courses...for exactly 17 seconds. 🙃) Most of the day was spent with Ken dozing as he struggled to control his nausea. As a mother of three who required medication for hyperemesis gravidum throughout each of her pregnancies, I have great sympathy for people suffering from nausea. And yes, of course, I reminded him of how sick I was and how I carried baggies with me everywhere I went, just in case my tummy rebelled; I've never claimed to be a saint! 😇
Thursday, PO3 was tough. Ken's nausea was debilitating, and he dozed to avoid vomiting. His emesis bags were definitely nicer than the Ziplocs I used while I was pregnant! They have a paper cone around the top, which helps ensure that the stomach contents go into the bag, not all over the patient, bedding, or anywhere else. I got very, very good at realizing when he was in imminent need of one, which was a good thing, as he had a nasty tendency to hold the bag with his finger on the inside of the cone! 🤮 They kept giving him more anti-nausea medications, but nothing seemed to help, and after 5 emesis bags, I was considering asking for medication for myself. 🤢 (How do the nurses do it!)
Thankfully, this bag only contains milk to demonstrate how it works.
The paper cone is brilliant!
By evening, it was obvious that Ken needed a miracle...or an NG (nasogastric) tube. Or maybe the NG tube was the miracle? I put out a call for prayer, hoping to avoid the need for the tube, but that wasn't actually the right thing to do - I should have asked for prayer that God gives the medical staff wisdom and that His will be done, not mine. Ooops. 😬 All through history God has answered prayers differently than prayed or anticipated. The Israelites didn't dream of being brought from slavery in Egypt to Canaan, the land of milk and honey, and the Jews did not recognize Jesus as their Savior; they wanted a king to overthrow the Romans. Humans can be rather short-sighted. 🤷🏻♀️
This diagram is labeled as Stomach Pumping, which is kinda' is,
except that Ken's pump only went on intermittently.
Soon after Ken's diagnosis, "Your Ways Are Higher Than Mine" by the Collingsworth Family, appeared in the My Soundtrack playlist, a compilation of songs Amazon Prime Music thinks I'll enjoy. They were right! The lyrics were all too fitting:
It's not what I prayed for,
It's not what I wanted,
It's not something I understand.
My circumstances seem so confusing,
I'm placing it all in Your hands.
One day I'm sure
I will look back and marvel,
At how You knew best all along.
You see from Heaven,
You know it's the hard times,
That make my face steady and strong.
Your ways are higher than mine
I want mountains to move
You want me to climb
So I'm gonna trust Your work, Your will, and Your time
Your ways are higher than mine.
When I start to doubt, help me believe,
Somewhere, so far above me,
Your ways are higher than mine,
I want mountains to move,
You want me to climb.
So I'm gonna trust Your work, Your will, and Your time,
Oh, Your ways are so much higher than mine,
Your ways are higher than mine.
You can hear the song
here.
After they inserted the NG tube, it became rather obvious why Ken hadn't been feeling well. It pumped out 1, 100 ml in less than an hour! It slowed down slightly after that, but yikes! The nurses were impressed, and I learned that stomach contents can be army green. 😖
PO3 is often the most difficult day following surgery, according to my friend, Mona, a nurse who happens to work on Unit 42. (I don't know where I would be without her, she not only helped me through my own surgery 2 years ago but has been such an incredible comfort and resource during Ken's journey, giving me critical info such as: "Don't stay in the room when they insert the NG tube - it's gaggy." 😁 It has also been cool to hear other nurses praise her!)
WARNING! Gross photo alert!
Below is a photo of the collecting container filled with Ken's stomach contents.
I've made it tiny, so if you are squeamish,
you should be able to retain the contents of your own stomach.
Friday, PO4, was a much better day. Ken was actually able to stay up for longer periods, and we even took a brief jaunt outside. Okay, so it was very brief - more like "Oh, it's colder than it looks! Let's take a photo as proof we did this and go back inside!" 😄 Having an NG tube isn't a lot of fun, but it sure beats non-stop nausea. Ken was able to think clearer and started to chafe at the thought of staying longer. Unfortunately, the initial plan of going home by the weekend was kiboshed by the need for the NG tube. However, we would much prefer that he stay a few extra days rather than have him come home only to require readmission - you don't want to visit the Emergency Department!
Today is Saturday, PO5, though it feels as though we've been here for much longer. Ken is pushing himself to get well enough to go home, perhaps a bit too much. 😬 We're glad he's doing so well and have had moments of awed reflection when we consider the medical treatments available. We are so grateful to live in Canada!
This sign was displayed in the cafeteria on Monday. It's a lovely sentiment,
but one I'd rather not be able to relate to so well.
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