Lakeshore

Dear diary —

Today I walked outside. I took my own picture there.



Love,

Jay

When idly scratching one's belly during sleep, it is best not to get a fingernail snagged in a surgical staple.

That will wake one up, even through the drug fog.

Imagine a few dozen nails dragged across a blackboard at once. There ought to be a word for that sensation.

Any suggestions?

I'm hooome.



There are no more ports, lines or tubes coming out of my body, except for the expected naturally occuring ones. My wound is healing well. The dope is good. lasirenadolce has been a champion beyond reason, and I am surrounded by the love of my family and friends.

I'll be on opiates for the next week or ten days, so expected intermittent and not fully coherent communication, but by Ghu I am back.

This morning, six days after being admitted to my hospital room, I happened to be in the bathroom and looking at ( the nurse's call there. )

Somehow I read "PULL FOR HELP" as "PULL FOR HEEP", and was promptly very impressed that OHSU had an emergency supply of Uriah Heep.

As my dad pointed out, this train of thought was not the least bit out of the ordinary for me.

Story of my life, lately.

:: laughs ruefully ::

Well, quality of life just went way the hell up.  Willa Catheter is no more.  And I love you guys so much that as a token of my respect and affection, I am not posting relevant photos.

Yet

Wet read came back on the path report.  Clean margins, clean lymph nodes.  I'll be around to bother you guys for quite some time come.

I'm going to live.

I'm off the IVs, as you can see here: Walker Cam
The real reason for the walker isn't balance — I'm ok with that. The real reason is to manage Willa Catheter. Her bag just doesn't accessorize well with anything I'm carrying. I've been walking more distance every day. The epidural was taken out yesterday and I'm on pain control by oral medication, but I lost bowel function during the Great Pain Crash, so I'm not being sprung until that stuff restarts correctly. In other news, I am feeling a lot more normal, as evidenced by my dreams. Last night I dreamt that this same team had operated on my Dad, then our daily care had been outsourced to a university dorm. radconbob was the ward doctor, and was taking great pleasure in explaining to me the joys of a low-bid menu. Back to bed for a while to surf the Dilaudid some more.  I'll try to be on later to read email and comments.

Dropped off completely yesterday as a result of some new adventures in pain management.  Let's just say the IPO failed on that venture.  I am better now but it made for quite an overnight.

Meanwhile, my extracted bit of colon tissue has made an appearance.  I am pleased to see my insides so directly

May be home Thursday, but still on very low energy/highly reduced schedule mode for a week after that point.

Doctor soon.  Later days!

Hello all of you wonderful people. On behalf of Jay and myself, thank you for all of the words of encouragement and support. He may not be posting much, but he is reading comments as he feels up to it. Keep ‘em coming!

Here we are at the end of day 3. Jay is sound asleep and I’m sitting here watching the twinkling lights of Portland from the Presidential Suite on the hill. No, really. On Saturday Jay couldn’t sleep because of the volume from the roommate’s television and I went to the Charge Nurse to see when the TV curfew was. He (who we now refer to as Awesome Shawn) moved us to the single room he had available which is the room they reserve for VIPs. So the Rockstar is in the Rockstar room as it should be ;) We have a spectacular view of the river and the mountains, the room is twice as big as any other private room I’ve seen on the floor with a separate kitchenette area and huge bathroom, we have a large television with a DVD player and plenty of room for the extra bed they provided me :)

As large as the room is, we’ve managed to fill it up a few times with family. We have the two moms, the dad, aunt #1, aunt #2, the sister, the child, the niece, the mother of the child and me as well as a few honorary family members. Jay says thanks to those of you who have offered to stop by, but he would prefer not to have additional visitors.

Since Jay had open surgery rather than laparoscopic, he has one heck of an incision. 20 centimeters vertically running from his belly button southward with between 25 and 30 staples. The incision site looks fabulous – no discoloration, no separation. All of the doctors and nurses who look at it say that it just doesn’t get any better. There are pictures and Jay will post them when he's back at it. We opted for an epidural during surgery, which continues to be the method of pain management. His pain level is usually at zero or one, however after walking it has gotten up to 3. We are very pleased. Much less loopiness with this route, too, which has been wonderful. I believe they will be transitioning him to oral medication by Tuesday.

As you can imagine, with an incision like he has, getting up and down without damaging it can be a challenge. The physical therapist was in yesterday to teach Jay how to get out of bed without ripping staples out. He went for one walk yesterday and today he took 5 – count ‘em – 5 walks. A few of them were double laps around the floor. Y'all don't worry – he isn’t overdoing it. He is doing what he is able to, no less and no more. He is committed to doing whatever he needs to do in order to get better.

Nothing too exciting happening and that is a very good thing. I should try to get some sleep before the next nurse visit, so that’s all for now. Remember to keep those comments coming and we’ll return you to your regular Jay programming very soon!

-Adrienne

Walked a little bit yesterday. Who knew bipedal locomotion was such an achievement? (Not to mention typing.)

I spent a bunch of last night dreaming I was pooping. Ah, wish fulfillment.

More later when I have more energy.

I am alive.

Hi everyone. Jay has been out of surgery since about 1:30pm. It lasted 5 hours and went exactly as planned. No surprises! He is currently in the recovery room being groggy. More later because right now I have to go try to breathe.

- Adrienne

The fear is gone this morning. Well, not gone, but sitting in its cubbyhole like an kindergarten hamster. The big Fear is lurking with it. I can't guarantee they won't return, but for now I am a millpond.

lasirenadolce has done a Production Book. We're calling this whole festival "Pink Macaroni". This thing is amazing, and when the dust settles a bit, one of us will post about it in detail. Basically it lets my family and friends know everything about my condition, preferences, medical situation, contingency plans, and so forth. Something happens, good or bad, all they do is look in the book.

In other words in times of stress that means less thinking, more caring.

They have promised me part of the colon section back in a jar. Imagine the endless possibilities for humor (or a charity auction donation). My (step)mother observed that I need to get one of my friends to knit me a colon cozy.

As for this morning, I am heading for the hospital dressed like I'm going to a con. May as well go to battle with all flags flying. the_child left me a sweet note last night after I went to bed (and I did sleep well). I'll have the knitted tumor kateyule made for me, which I've asked to have as soon as they'll let me in recovery or the surgery ward.

"NO TUBE" is written on my right nostril in Sharpie. "NOT HERE" is written on each elbow, per a suggestion in comments. The house is being made ready for me to return sometime next week.

All that's left is to go.

As the man said, I'll be back.

I love you all.

I spent the first part of the day closing out and handing off tasks at the day job, the next part of the day coping with Fleet (which beats the tar out of a gallon of GoLYTEly), then in a presurgery intake appointment, then time with the extended family, before settling down for a movie with the_child while lasirenadolce does her thing on prepping and planning the next two weeks.

No more prep for me. A short night's sleep, out of Nuevo Rancho Lake a little before 5 am, and into the OR. They're supposed to start cutting around 7:30 am Pacific time, and a preliminary guess is that I'll be in recovery around 9:30, and out to a surgery wing bed in the early afternoon. lasirenadolce will update here as time and Internet access permits.

Meanwhile, life continues to hand me good news. A friend emailed that she saw a whole pocket of the Mainspring [ Powell's | Amazon thb | Audible ] mass market paperback in a WalMart in El Paso. Today the_child made the cut for a role in the professional performance of ¡Entusiasmo!. I've told her that wanting to see her perform is what will bring me out of the hospital.

Y'all play nice while I'm gone. There'll be a quiz once I'm back.

Well, I'm on clears today. Last night was my last normal meal for, oh, quite a while. So I organized a family dinner at De Nicola's.

lasirenadolce was back in Tacoma for some much-needed R&R, and kenscholes couldn't make it, but pretty much all the rest of the Portland family loop were there — the_child and her mother, Mom and Dad, tillyjane and her retrostepson S— (yes, we're a Southern family, why do you ask?), lillypond and her friend C—. as well as the Niece, my aunt M—, karindira and Youngest Daughter. We were a mob in the back room, the dinner culminating with a dramatically architectural cake baked by the_child. I believe there are photos somewhere, but I no got them.

Amazingly I am still sleeping well, though tonight will be the killer. I am waking up quite early, and as I said yesterday, my world feels very narrowed.

Anent the Big Fear, I'm down to two right now. There's the one which crosses over into rational fear, about playing an endless, downhill game of whack-a-mole with a metastatizing cancer. While's that's possible, to all clinical indications it seems unlikely. It still dogs me.

The other is my unreasoning fear of general anaesthetic. I'm not even too crazy about sedation. I have my pre-op anaesthesiology consult today, and I will be rational, thoughtful and attentive, but by tomorrow morning the snakes in my gut will be the size of a sewer pipe coming out of my rib cage. I felt this way before I had my septum fixed back in 1999, and was fine. Like I said, unreasoning fear. Big Fear.

Still, the true terror for me is not dying. Oddly, I seem to be able to accept that possibility, slight as it is, with an almost eerie calm. The true terror is dying without waking up first, and being unable to say good-bye. So to manage that part of the Big Fear, I am writing some sealed letters today, which I will make a ceremony of shredding, or possibly burning, when this is all over. Just so my voice can be heard by my daughter, my parents, everyone else whom I love, one last time should I somehow manage to pass through the Door That Never Opens Twice.

I am brave today. Tomorrow immediately before the surgery I shall almost certainly be a gibbering craven. The day after that I will still be alive, and I will have won. Someday soon we shall all laugh together.