Can You Fail A Biopsy? (Post #4)
Ha! Or you can just get an overnight pass and not return...😁
In the 30+ years I've known Ken, I don't recall him ever failing a test...until we received the results of the biopsies Dr. Haase took during his surgery. 🫤
Oh, I know a biopsy is technically a procedure, not really a test per se, but it pops up as a "New Test Result" in the MyHealth app, so I'm calling it a test.🤭 I received an unwelcome surprise when I read the report and realized that while the surgeon had removed all visible cancer, there were more than a few microscopic cells left behind. Dr. Haase called us with the results the evening before Ken received the report and seemed quite put out that she hadn't managed to remove every single cancer cell - I think she took it personally.😊 During our conversation, she listed some of the places where the margins weren't clear but reminded us that the HIPEC procedure done after his surgery should have nuked any remaining cells. (Adenocarcinoma that has spread via a ruptured appendix is not a tumour that can simply be cut out; it's more like the caramel coating of a popcorn ball - it covers everything and isn't easily removed.) However, there was some good news among the bad - lymph nodes taken from the ileum and jejunem were clear of cancer, and of the 32 lymph nodes she removed from his colon during his right hemicolectomy (removal of the right and part of the top portion of his colon), 17 were clear. Of course, that means that 15 were cancerous, but Dr. Haase didn't seem too phased by that result; she was delighted that she had removed all the cancerous nodes and had a nice perimeter of non-cancerous nodes. 🤷🏻♀️ The size of the actual primary tumour (where the cancer started) was 3.5cm, which is almost double what it was on the CT scan taken in January, when it was 1.8cm. I'm telling myself that the first scan was wrong. (Closes eyes, pops fingers into ears and begins droning "la-la-la-la-la...🫣)
On April 17, Ken has an appointment with his oncologist...who is also my oncologist. What are the chances? 🤷🏻♀️ We have had wonderful experiences with Dr. Zhu, and upon hearing that he also sees GI cancer patients, we asked if Ken could see him. He already knows our history and is less likely to be shocked by our tale of woe. 😏 Anyway, I'm getting waaaay ahead of myself, so let's backtrack.
I couldn't kiss Ken when he was hooked up to oxygen or had an NG tube,
so I "kissed" a makeup sponge and brought it to him - a portable kiss! 😘
Ken was not exactly a model patient. Honestly, German doctors are the wurst! (Sorry, I couldn't resist! 😄) While he didn't go against medical orders, he was super bored, and by the time PO6 rolled around, which was Sunday, he was quite fed up with the terrible beds and constant disruptions to his sleep. (How dare the nurses check if he's breathing!! 😁) I was getting ready to spend another day at the hospital when he called:
"Guess what I did!?!"
"Uh-oh, what did you do...?" (He sounded way too excited...I was worried.)
"I got Dr. Haase to give me an overnight pass! And I'm not planning on coming back."
"Excuse me?!?!?"
"Come get me; I can't wait to get out of this place."
"🙄"
This is from the very man who has "sentenced" many patients to time in "jail" (his words) during his 25+ years of practice. You know what they say about walking a mile in another person's shoes...better late than never, right? 😊 So, Ken arrived home on Sunday and thoroughly enjoyed an undisturbed nap in our much comfier bed.
Ken was so delighted to be let out on an "overnight pass."
Upon leaving the unit, he was asked what time he would be returning. His response was to look like the proverbial deer in the headlights, so I replied, "10:00 in the morning." I was NOT keeping him home if his nursing needs were more than Marigan and I could handle. Yes, Marigan is a nurse, but she's an ER nurse and specializes in only keeping people alive until they're either sent home or admitted. (Or left to languish in a hallway for a week...🙄) And I am not a nurse. At all. 😖 Thankfully, when he called Unit 42 the next morning to ask if they had a fax number so he could send them his records (see photo below), they realized he was in good hands and asked Dr. Haase if he could remain at home. She, of course, said yes.
We take charting very seriously around here!
Again, my poor friend Mona was inundated with WhatsApp posts prefaced with, "Incoming gross photo alert!" and questions such as, "Is this normal?" On Thursday, Marigan removed half of his 42 staples (no worries, there are dissolvable sutures underneath), taking out every other staple and replacing them with steri strips; on Friday, she removed the rest. (If they stay in too long, they are difficult to remove; as it was, Marigan had to do some serious digging to remove one particularly stubborn staple that wanted to stay with Ken forever.) I was concerned about re-introducing solids into Ken's diet, as my research showed that a post-cholecystectomy (gall bladder removal) diet was essentially the opposite of the foods recommended after CRS-HIPEC. Dr. Haase just laughed when I asked her opinion and told us, "Ken's gallbladder was so full of rocks, it probably wasn't making much of a difference." Well, then! So, other than the anticipated bowel challenges (I've never been so grateful for a huge bathroom window that opens! 😷), he's done remarkably well.
Which is problematic. 😖 I remember feeling great during my own surgical recovery and forgetting to pace myself...and I have never ever worked even remotely as hard as Ken has most days for the past 30 years! He's suffering from some serious work-related whiplash, but not the physical kind. 😏 Imagine going from a day that begins at 7:30 am and ends at 12:30 am, with only brief breaks for breakfast and lunch (provided these occur at all) and perhaps an hour's rest after work, to waking up and not knowing if your body will cooperate with your plans for the day...provided you have any. It's been quite a shock to his system!
When Ken broke his leg in 2018, I rigged up two shower
curtains to a cable affixed to the ceiling. (Our main
shower is in the basement, and I wasn't keen for him to
bum scoot down 14 stairs.) I hooked one up again. 👩🏻🔧
So, what's his prognosis? You know, can you do me a favour and NOT ask Ken this question? Seriously? He has Stage 4 cancer; are you deliberately trying to be cruel? 😠 For pity's sake, if you want to know the stats...Google it!! Unless you are a close friend, family member, or part of the medical community, this information is seriously none of your business. 🤷🏻♀️ I've encouraged Ken to respond by saying, "Well, I'm alive today, and tomorrow looks likely," but he's too nice to say that. 😇 Because Signet Ring Appendiceal Adenocarcinoma is so rare (0.15 in a million as per The American Journal of Gastroenterology), there isn't exactly an abundance of research papers available, especially recent studies involving both CRS and HIPEC, so no one really knows. Yes, his cancer was listed in the biopsy report as Stage 4C (there is no 4D), but there's always the G-factor (God Factor), which throws a monkey wrench into everything. 🐒
Unfortunately, I didn't get the "Where is the cancer?" surgical miracle I'd wished for. 🤷🏻♀️ In 2014, a dear friend was told he had 18 months to live. The other day, he reminded Ken: God is not a God of statistics (so, yeah, he's still here, in case you missed that part...😊). As I've stated before, I believe, unequivocally, that God can heal Ken using whatever means He chooses. What I don't know is whether that's His intention, and if it is, when. It would be nice to know the plan in advance, but as God hasn't shared that with us, we're just taking it one day at a time.
That's definitely easier typed than lived. 🙁 Trust me, I'm not in denial; after generating more than 7 pages of notes while reading medical articles, I'm all too aware of the gravity of Ken's situation. I am, however, also aware that the God who brought me from "We're discussing the need for ECMO" to walking out of the ICU 6 days later hasn't changed. 💗
Some days are easier than others; cancer isn't just a battle of the body but also a battle of the mind and spirit. We're all terminal; that's an inescapable fact. 🙃 As the facetious like to remind us, "No one gets out of here alive." However, there's a difference between receiving a "grave diagnosis" at age 54 (terminology used by the government when filling out disability forms) versus age 94. God has given us the will to live, and this is a good thing! So, accepting that God's plan for Ken's life might be shorter than we'd prefer isn't easy to grasp. I had an epic "Jacob-wrestling-with-the-angel" battle the other night when I tried to understand how my becoming a widow before I'm 90 could be a good thing. But then I realized that I'm not God; I don't have to understand the future, and I certainly don't have to explain it. What. A. Relief. My job is to trust. That's it. Besides, Ken may live to be 94 and surprise us all. 🥰
On my way home from the hairdresser on Tuesday, I allowed Prime Music to create a playlist. A song I'd never heard before caught my attention; it felt like the cry of my heart put to music. So, while I'll never pretend that I don't have periods when "my faith and fear are at war," when I remember God's faithfulness, I am flooded by peace, yes, that "peace of God, which surpasses all comprehension" (Philippians 4:7). I'm glad He's still good, because certainly isn't. 🫤
Peace In Trusting by The Isaacs (YouTube link)
God only knows how I've cried
Heartbroken, and my hands are tied
But He's been faithful time and time again
And although I don't know how it ends
There's peace in trusting the Lord
Peace when my faith and fear are at war
So I don't have to worry, He knows what's in store
And there's peace in trusting the Lord
There is peace in trusting the Lord
If His will should not go my way
If the answer is not what I've prayed
Then I'll trust Him for what I can't see
'Cause I know He knows what's best for me
There's peace in trusting the Lord
Peace when my faith and fear are at war
So I don't have to worry, He knows what's in store
And there's peace in trusting the Lord
There is peace, peace, peace in trusting the Lord
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