Willie's cancer

We are both so happy to be home. Three nights here have been very nice and we are both adjusting to the feeding tube routine and meds he takes to still manage pain. Most of the pain is in his feeding tube area. We cut back the amount of milliliters per hour from 60 to 50 yesterday at 3 pm 10/30. He feels like 60 makes him too bloated. He still doesn’t have his voice back. That’s disturbing. He’s hard to hear and has to repeat himself which is frustrating and probably hard on his throat. He is eating and drinking a bit more. Drinking about 16 oz a day of water. He drinks a good 16 oz of coffee with cream and sugar too. Because j-tube site is still so tender and a bit red we reached out last night to Dr Loewen. To be safe, he gave him a prescription for antibiotics which is a 10 day cycle twice a day. Since it’s Halloween today, I am including some scary photos of his incisions etc so you can see for yourself if he’s healing properly. Skip the rest of this blog if you don’t like that sor...

We made it home today, 10/28/2025, Tuesday, at 3:30pm. It’s so good to be back home. Today was absolutely crazy! Nothing was the same. Breakfast for Willie didn’t come till 9:30 and it was kind of quiet from 7:00 am to 9:00 am. Normally everything happens from 7:00 am to 8:00 am during shift change; new nurse gets intro, blood pressure, temp, breakfast (liquid diet for Willie), medication, surgery check in, X-rays, blood draws, change dressings and on and on. After 9:30 it was non-stop traffic in the room as we waited to know for sure that we were going home. We had a good visit with one of our night nurses, Tara (Tar - uh), that took care of Willie on Thursday and Friday nights (day 3 & 4) as she was getting off shift and came in today goodbye. She was great and somehow we all became friends and built connections during that 2 day night period. The dietician, Melinda Johnson, came in around 9 to train us on how to use the Infinity external feeding pump and portable backpack. Lucki...

After 7 nights sleeping 💤 in the hospital it looks like we are going home today. Exciting! Willie has done really well making great progress towards healing every day. To me, it seems longer with all the sleepless nights of interruptions for medications at 10pm, 12am, 2am, and 6am, peppered with more interruptions for blood 🩸 pressure, temp, fixing leaky wounds, and call button needs. On the good side, we’ve had all that we need and the nursing care has been really good. Yesterday they did an xray and blood test to make sure all is well. We will be task trained on how to change feeding tube liquid nutrition and what to eat. He is currently in a “full liquid” diet mode. Here is something’s he can eat while he is on that for the next several weeks until he can move to “soft foods”. Today as we are patiently waiting to be discharged and talk to the doctor it’s been a different morning from the last 2. Normally between 7am and 8am which is shift change we have about 5 different people in...

Today is day 5 after surgery. It was a pretty good day. Willie got approved for a full liquid diet which means he can have all kinds of liquids. Most importantly coffee with sugar and creamer. He started his morning with his first cup of coffee since Monday and he was soooo happy. You should have seen him smile! Yesteday he ate and drank a little bit and today he ate and drank just a little bit more than that and even has some bites of potato soup for lunch and tomato bisque for dinner. He can have ice cream and smoothies now too. He’s taking it a little at a time and each time he drinks he must sit upright in a chair for 30 minutes. This is strict orders. It’s hard to fit that in with all the nurse checks, pain meds, CNA blood pressure and temp checks, beepers and buzzers going off in here constantly but maybe tomorrow. He has to do this forever. The reason is that ther isn’t a valve from keeping things from coming back up and potential aspiration and fluid going into his lungs whi...

It’s now Saturday morning, another 48 hours since my last post. Willie came here on Tuesday for his surgery, and has had 4 sleeps here and last night was pretty good. Both of us got several hours of sleep. 💤 Yesterday was a busy day! He got the nose tube which out that went to his stomach to suck out blood and bile from the surgery. Then around 9:30 took out the Foley catheter. That meant he can drink and eat clear liquids and get out of bed to urinafe. Therefore the entire day was spent on waiting to pee and getting up courage to drink water and eat jello. This photo shows what they are putting on his tray to eat and drink. 👇🏻 Yesterday they cut down the tube feedings to 15 mg from 30 mg per hour due to stomach pain he was having. That and pain meds seemed to do the trick. And they stopped giving him LR’s (electrolyte water) when they took the catheter out. He was supposed to drink water and stuff. But since it was the first day without the tube down his nose that didn’t h...

48 hours is how long it’s been since his surgery. To me it seems longer since I’m spending all my time observing Willie in the hospital and slept here the last two nights. To me, and the surgeon/nurses, he’s doing great. To him, not so much. Typical level of pain is 6-8 once meds wear off. But the nursing staff has gotten his pain mostly under control with a combination of intravenous Tylenol and dilaudid when he needs more help, and oxy every 4 hours now either 5 or 10 mg depending on pain level. The photo above shows many of the things going into his body right now. Nurse 👆🏻Taylor on the left and EJ on the right are his day nurses that took over from Olivia who we’ve had the last two nights, shift change at 7-7:30. These girls are amazing and have already gotten him up and in a chair for 5 minutes at around 10:30 am. It was super painful for him and he couldn’t wait to get back to the bed and some pain meds asap. It’s not a fun time for him at all and he’s in a lot of pain and read...

Surgery was yesterday, 10/21/25. We arrived at the hospital at 6:45am. Dr Loewen had to perform an appendectomy on someone before he did Willie’s Esophogectomy. Therefore, he went in for surgery at 9:15am. I was happily surprised that my friend Cindy Lee dropped by around 9:45 am to sit with me and distract me from the stress of it all during the 5 hour surgery. She brought me a super sweet care package too with special treats, water, sanitizer, magazines, crossword puzzles and a special angel that she found on her trip last week. We went for a walk too which was nice. It was a pretty day. That calmed my nerves and having her there was so amazing and very much needed. the surgeon came out halfway through the procedure to let me know it was going well so far. Then he came again at 2:15 to tell me surgery was complete and nothing else was found. The tissue he removed was sent to the lab to analyze. We are standing by for the results. He also removed a small lump about the size of an eras...

Friday 10/10 went to visit surgeon about PET ( PET TUMOR IMAGING W/CONCURRENT CT LOCAL SKULL BASE TO MID THIGH) that morning and get a blood type & screen done. It was a final consult prior to the surgery in 10/21. Results of PET were encouraging. Chemo worked to shrink the tumor. Nothing lit up on the scan. Impression 1. Significantly decreased uptake within distal esophageal mass.  2. There are new bilateral upper lobe nodular pulmonary opacities with mild associated uptake which are most likely infectious or inflammatory.  3. Mildly increased uptake within multiple nonenlarged mediastinal nodes may be reactive. Recommend attention on follow-up. This picture above is Willard getting the scoop on surgery from Dr Loewen. He’s going biking in Moab over the weekend and this week on vacay and promised not to break his wrist prior to surgery. Fingers crossed! He’s also a pilot. Tons of risk factors here and this surgery is no joke! Today, 10/13, Willard had another upper endos...