Turn of Events & Stuff

​Chemo happened on Tuesday.   Wednesday Willie started having a lot of discharge and pain around the j-tube.  Sadly, it didn’t subside at all and he had level 10 pain so we sent a message with photos to Dr Loewen through MyChart Wednesday night.  He’s truly been suffering for 3 days and basically can’t move, just lay down.  

These photos give a good idea of what it looked like Wednesday.  The connection was a bit pulled away from the skin and the tube would fill with what looked like bile or stomach acid.  Yesterday after his shot of Zarxio he met with Dr Loewen to take a look at it.  He was sent back home to wait until the regular scheduled meeting on 12/11 for follow up.  

Today, he went in for shot #3 of Zarxio and came home.  But his serious pain and suffering continued.  Dr Loewen called around  3:30 and asked if he could come over to his office.  Turns out he decided the feeding tube needed to come out.  That was an office procedure and didn’t hurt as much as we thought it would.  After the tube was out, he felt less pain.  But with 3 days of bile leaking out his skin is very angry and red.  Dr said Desitin on that will help and to keep it covered with gauze until the hole heals up and closes.  

He will need to take all calories by mouth now since he can no longer rely on nutrition by feeding tube.  I’m pretty worried about since the surgery he hasn’t been eating much by mouth (maybe 300-700 calories at most when I track his eating).  He would get 1500-2000 calories through the tube.  So now that his smaller stomach and chemo combined he more than likely will lose some more weight.  He has held his weight since surgery which is so great.  I sure hope he can manage to eat at least 1500 a day but it’s going to be his biggest struggle until he finishes with round 4 on January 14, 2026.  

Below is a photo of the backpack that he has carried around since we came home on 10/29 and that he was hooked up to in the hospital too (same Jevity juice).  The bag to the left  gets filled with the boxes of nutrition.  Typically he would get 5 to 6 of them a day through the feeding tube which went in at 60 ml an hour (about 1/4 cup).  He would get a 2-4 hour break from the Infinity Pump each day but needed to have the tube connected for 20-22 hours a day.  It would beep loudly with kinked cord or needed to be filled.  So most times it would run out at 6am and he’d leave it off to shower and move around for awhile.  We changed the bag out every day and used a new one.  Also had to flush with 30 ml water every  4 hours all day long so it wouldn’t clog up. 

Something I haven’t mentioned in this blog is that after the surgery in October (esophogectomy), Willie lost his voice.  He’s super hoarse and not very loud.   It’s a struggle to talk and he’s very hard to hear.  At first we were hopeful it would come back right away as we were told that it’s normal to be hoarse after a long surgery with anesthesia and tubes down the throat.  It was surprising that it still hadn’t improved in a month.  Now it’s been 6 1/2 weeks since surgery and still not his normal voice with little to no improvement so far.  It’s been very frustrating for him (and me too) to have this issue on top of everything else.  Yesterday, Dr Loewen referred him to a speech therapist and he has an appointment on 1/7/2026 with that doctor.  Apparently there are some things they can do to help him.  We will see.  We look forward to him being able to talk normally at some point hopfully soon.   

I write this so that I can share about this process, to track our journey, and it helps me feel better.  It’s so hard to watch a loved one struggle with health issues.  It’s a battle every day.  It’s so hard to try and find ways to be supportive sometimes while juggling work, life, and all the things.  I know that it will probably get worse before it gets better.  I know it’s even more hard for Willie.  Each day is a new surprise that we can’t control, expect, or know what to do about it.  We are both counting the days he can feel better and start truly healing.  That day is coming.  This I know.  Still, it’s so hard to wait.