Waking at some point during the night creates a dilemma. Do I try to fall back to sleep or do I try to eat something? It has been 5 hours since that protein biscuit, there should be room. The walk to the kitchen along with the calories will likely disrupt my sleep. Sleep or calories? Calories or sleep? Not that I need to be awake at a particular time. It is hard to judge where I am in recovery. Was that nap after my long walk the length of Howard Rd progress? Was it a good day or should it be 3 shorter walks and no naps? As mundane as these questions are, they make one realize there is no guide to recovery.

Tonight’s answer was lemonade. Unfortunately I’m left to grade my own test to which my response is “Goodnight!”

P.S. Shoutout to Dave. A good friend who often has trouble sleeping and may be awake this very moment asking himself similar questions?

The pathology report is back. They found a single focus of signet ring cell carcinoma (adenocarcinoma). They also found a gastrointestinal stromal tumor. Twenty-two lymph nodes were biopsied and all were negative. Histology at the esophagus was squamous (teaching moment) which means Dr. Roses removed all of my stomach so no follow up treatment is necessary. Plan is to let the suture in my j tube dissolve over the next 2 weeks. At that time the doctor should be able to pull it out.

Conor took me to a matinee of the Avengers Movie. Nice to get out and do something. We went to the Movie Tavern. The 3 hour run time gave me time eat chicken tenders and a few fries. Feeling more energy each day. I even did some laundry. We will see tomorrow if I over did it.

I made it out to Plantation Horse Trials to watch Kiley ride dressage. It was wet and cold. Show jumping was canceled. Not the best of days but it was nice to be outside. None of this would have been possible if not for Sue. Can’t imagine the challenges she faced the past 2 weeks. Trips to the hospital, sleeping in her corner nest of room 1226, running home or into the city to take care of Kiley. At home, trips to the pharmacy, multiple trips to the market to find things I might eat. As much as I have gone through, I know this impacts those around me. Couldn’t ask for a better support team in Sue, Conor, and Kiley. Can’t do much to make Mother’s day special except to acknowledge my hero. Thank you , Sue. Happy Mother’s Day!

Sue asked this question which i hadn’t stopped to think about. I know what I eat travels into my esophagus then into my jejunum. I chew any solids I ingest to mush before swallowing. The antibiotic I take is a large pill. I swallow without problems. Even knowing I have no stomach left, the sensation is the same. I swallow and food goes to my stomach. The difference is that after I swallow I feel full on maybe 1 or 2 teaspoon. So I wait 2-3 minutes and go again. The week before surgery, I could eat, feel full, and stretch my stomach to include dessert. That doesn’t happen now. The simplest answer to how it feels is “no different “. Sensation and perception are same before and after. I suppose my brain has no reference for a body without a stomach.

It has been 2 weeks since the surgery. I still have moments when I ask myself, what have I done? But each day is a little better. A little more energy, shorter naps. I was about 197 lbs the day before surgery. Today I weighed in at 181. While I would like to be happy with the loss of body fat, I would be happy if I knew I could turn on my appetite when needed. I also need body fat for the nightly lovenox injection. Thank goodness for love handles.

There are careers for this: Nutritionist, dietician, food critic, chef. I didn’t choose any of those because they didn’t interest me. I clearly need to change my ways. Had my feeding tube evaluated. It would not simply slide back in so it is secure but I will try to get by without it. I need dense food. No concerns about heathy. Fat calories are good. Simple carbs like finishing off a bag of m&m is a no. I can only handle so much Ensure. Takes about an hour to finish a scrambled egg and a slice of toast. So yes, eating is now my full time job. When I’m not eating I’m still thinking if there is any way I can ingest more calories.

You won’t want to eat during this story unless you enjoy dinner while watching Dr Pimple Popper. The doctor drained the infection around the insertion of the J tube. There must have been a pouch in my abdomen. The puss kept coming. Sue said she almost passed out. I couldn’t watch and almost passed out from the pain. It does look and feel better. The home nurse will check on it tomorrow.

There is no denying my clumsiness. I couldn’t have been a surgeon. At work if I accidentally cut a nerve or artery no one suffers. Going fo walks with the NG tube dangling out of my nose was uncomfortable. It got in the way and was tugged on several times. Started a nose bleed. It was anchored well so the only damage was to my nose. There is a small remnant of that bruise on my left nostril.

Now imagine having a skinny tube coming out of the left side of your abdomen about the level of the belly button. Should have thought to tape the j tube to my thigh or abdomen. Was all set to start my first night of feeding. Pump was running, I stood to find my shirt and pants were wet. The infusion nurse was still here. Flushing the tube revealed that it was partially dislodged. I could feel the fluid enter my intestine. The pressure causes pain. I could also see the fluid dripping out of the incision site. The nurse cleaned up the incision. The doctor on call at HUP was one of the residents who rounded on me and is aware of my case. I’m to do without for now. My appointment is on Thursday to have this evaluated.

After 10 days at HUP, I am happy to be home. Grateful for the nurses, nurse assistance and everyone who took care of my needs. Don’t think I have ever gone 10 days without being outside. Looking forward to walks around the yard in place of around the nurse’s station. Can’t wait to start the next phase of recovery.

I’ve got no strings
To hold me down
To make me fret
Or make me frown
I had strings
But now I’m free
There are no strings on me

Feeding and IVs off!!