Ray’s Blog

The first thing I noticed when I came out of surgery was the NG tube in my nose, throat and stomach. Having that thing was the worst part of my early recovery but in a way it was the best because it forced me to write all my communications since it hurt so much to talk and swallow. So now I have a real-time journal that’s like listening to a one-way phone conversation since I was the only one writing. There are two parts, divided by when the NG tube was removed noted in my writing by “DAY 3.” After Day 3 I decided to continue my journal even though it wasn’t a necessity so from that point on it’s more like a traditional journal. I’ve transcribed it as is without editing. I’m amazed how much I was writing before DAY 3 which was about a 24-hour period. Enjoy.

FUCK!

Incision pain is OK

Unless I move

Catheter feels fine

I can push out urine if I choose to

Cuffs on the legs feel good

IV feels good

I will be walking starting tomorrow

Don’t remember surgery

I do remember getting the epidural

Operating room was scary

Too many people all working on me

Bright lights

Poor décor

Too many instruments

What the hell are they going to do to me in here?

In surgery I thought to myself

I was barely conscious in recovery

But that felt good

Do you really have to leave @ 8?

Good

Is this my permanent room?

But I sleep here tonight?

I’m tired so I think I can get to sleep anywhere

How are the kids?

Good

I want to watch my Dr. Katz after you guys leave

Internet?

Is this your pad?

I was asking for one but had little hope of getting it

They were talking to me but I didn’t want to talk

I asked two different people

I was at first told to whisper

FU

Just that

Everyone else has been great

That all ended when I hit the surgery room

They really should prepare you better for that

I would have liked to have seen the room first

As long as I don’t need to swallow

Cntr+alt+delete

I can’t really talk

Pretty good

I’m pretty tired

No real pain except when I swallow with this tube in my throat

I was told and Barbara is my witness that I wouldn’t need it by the surgeon

Have you been here all day?

WOW

What was it before?

Nice 101/67

I was told that because I slept through it really

After I came out of anesthesia

My incision feels good but at home I won’t have the epidural

Any Porno? Any fetishes?

Vegetarian

He didn’t talk to me in OR

I can feel it’s not there and it feels good

Is the switch to the left of my head? the light?

Adjust the bed so I can sit up

Can this thing in my nose be clipped down?

You made me pee!

She did but probably coincidence

I am tired

But you should stay

If I could spit out in a cup or something that would help

Where are the lozenges?

I would like to try them but if I need to swallow I may not want to do it

I either goes up or down

Let me try a piece of ice

I want to spit again

I seem to want (and do) swallow

Before I spit anyway

The laptop needs to be plugged in at some point

Let me have the laptop for a minute

I want to set it so it never shuts down

What else?

I thought he might be able to tell me something and I do want to know

He said that indicated chemo or you know that?

Did he say how much? Like a minimum?

Well, he did remove a lot of that anyway

It really doesn’t mater but how long has it been there?

It’s almost like the cure is worse than the disease

Who knows? That I have it

OK Yeah, I can’t really talk

Right

You can call my parents and my brother

So we still don’t know where else it may have spread to

We all know how accurate that can be. NOT.

That’s good about the visual

When does the chemo start?

Swallowed

My butt is starting to feel awkward

I’m going to try to move a little

I mean just the muscles

How do I sleep with all this stuff in me? Just try to stay still?

On my back?

Is it worth it to have Cary get someone?

Based on reports? Or verbal consults? Or both? Great!

When I went into the OR they were playing the Police and I explained why that sucked for me

The problem with the lozenge is that I will need to swallow. But let me try it.

How do I get more if I need them?

I assume the order went in OK

I have a button somewhere on my left side

Help me find it

It was a wire

It feels like there is a line under my butt

Catheter?

That is what is giving me discomfort

Maybe ask the nurse about it

Delgato didn’t mention stage?

That might be important

This thing was sucking pretty good before

Nose

Maybe I should just press the button

Have him come in if he wants to

Thank you

Maybe

It seemed not to be sucking too well

That feels better

Do I just press the button for another lozenge? It seems to be working well. I don’t feel the need to swallow. But it may just be numbing my mouth because of that. Better than not having it

Ask about Ethan. I would like to see him.

But maybe that’s being too selfish

I won’t really be able to talk to him but he’s a really good person

I’m glad you’re here

Clean me up and ask about Ethan

Ethan’s OK because he’s a doctor

So hopefully one more day of this

I just wanted to say hi since he was already here

He knows that, right?

This is not a house call

Christina, you would love the collars on my legs

Like BP collars

Lift up my blanket a little bit to see

I can’t turn one page can you get it?

Am I shooting for a particular number?

So I should start now?

10 deep breaths and one cough?

Every time they mess with it it goes good

But now that it’s in correctly …

I can hear the suction

Can you?

I couldn’t deep breath when I first came in (maybe not even now) and I was asked if I was a smoker

No, I just had half my abdomen removed!

Could Ethan give me any indication of when?

I have an itinerary to keep

These will be a great read

I can post the transcript later

It’s so detailed I should be able to reconstruct it

Poor handwriting won’t help

I know you do

Well, I’d rather not have this thing on my finger

So you told Ethan why we’re here?

Good

Could be better

I can’t talk comfortably because of this tube, sorry

Aydin kicked me in the colon

No one can believe it

GI Weinberger was shocked

No one wanted to admit it

Reyes – hematologist

I’m a little afraid that the tube is not working and also if I swallow I may disconnect it, break the tube and swallow it

Now that the surgery is over and we known that it is cancer

That’s what Cary said

Abdominal spasms

From eating fat

Pheno

Last smoked in college about 15 years ago

Not regularly but socially

39 1985-1992

Sat up in bed made fluid drain from tube

Started walking in bed. More drained with this method

Preparing for first real walk this morning

Mentally determined but incision point will be painful

Don’t want to overdo it

But don’t want to wimp out either

Largest discomfort is the tube down throat

That’s why I’m still writing

Cepacol lozenge feels good

A little after 5am

Went to bed at around 11:45

Up all night with all the noise

Everyone’s IVs were beeping when they needed refilling. Everyone’s BP cuffs were going off every hour on the hour

People receiving phone calls on cell phones

People yelling across the room for the nurse instead of pressing the button

No one knows how to whisper

Conversations at 2 and 3 in the morning

Some just in a lot of pain and can’t help it

Some attempting to wake up early and turning on lights

Nurses moving around all night

I hope I’m out of here soon

Would be easier to sleep

Watching Dr. Katz was a great idea

Can’t wait to see the episodes I haven’t seen

The ones I have still make me laugh

Draw blood

Maybe from my right hand?

I want to leave room for another IV placement in the left hand/arm

When I sat up this morning the tube began to drain. I certainly didn’t hear it while I was lying flat

Either it wasn’t or it was very slow

When I first sat up it made a lot of noise and I could see it draining

Then, I started walking in place to prepare for actual walking. That helped the drainage too.

I was a little warm last night

Sweating a little

Itching still there but still not bad

They want to know if the cancer has spread especially to the blood

Maybe 5-7 for the sore throat

Incision is fine unless I move

So we’ll see

Could you put my laptop here and plug it in?

I also want the DVDs

Are you going to be able to get the spray for my throat?

I think a lot of what is coming out is the cloroseptic

Blood thinner and stomach acid reduction

I don’t want to see anyone today

I still can’t talk

And am still uncomfortable with this tube

They really can’t remove it until my stomach starts working again

My nurse today is trying to get a spray for my throat. They need to clear it with Delgato

I’m constantly on these

You were here earlier?

It’s just hard to communicate

OK

I walked today. That’s how I wound up in this chair

It would be easier to sleep in the bed

I didn’t sleep very well last night

I’m getting g enough

Read (not out loud) what I wrote this morning

Order me the MP3 version of Avi Bortnick then put it on my memory stick

I think it’s in my bag. Check for it

It’s $8.99 the MP3

I’ll listen to that in a loop

It’s really just this tube

I got a shot of something to get rid of acid in my stomach to help expedite removal

whatever

Has Delgato approved the spray?

You’d think he would have already approved it

They’ve been monitoring my temp

I told the nurse who was on last night this morning that I was hot and sweaty last night

I’m just really tired today

When the cuff goes every hour

Can I get a cup to spit into

I just coughed and it really hurt

Can I have a supply on-hand?

I’m coughing up mucus and it really hurts

I have to get it out or I’ll just keep coughing up the same stuff

I’m supposed to breathe and cough every hour

The mucus is from my nose/lungs

I breathe with this but the coughing is happening on its own

My BP cuff goes off every hour that’s how I time the breathing

They expect me to cough but it hurts so much I’m checking for blood in my dressing

It’s a very abdominal action

I’m trying to breathe with my mouth to dry it out and I’m stopping the cepacol for a while

I tried that. Maybe later

If I keep coughing, I’ll ask for more epidural

Or morphine?

If this keeps up I really don’t think I want to see anyone today

Christina found a really great resource

Imtooyoungforthis.org

For caner patients 18-40 years old

I’m not feeling to well right now, I just started coughing and it hurts my incision

Tonight if I’m still here I’ll put on the headphones and listen to music

Not yet but he is expected

I’ll see the kids when this thing comes out of my nose

I’m not talking because of the tube

I have been

DAY 3

Yesterday was a good day

NG tube removed

Instantly able to talk and swallow again

Delgato removed it. No one would believe that the NG tube was causing my problems and blamed it on the air tube that was in during surgery. NOT

I just noticed this morning during towel bath that my entire right side is completely numb from thigh to above the waist

Thank god for that

Walked four times yesterday

Had the best walk yet this morning

Had my dressing changed for the first time last night

Incision is partially open because of prep not working as well as it could have. So to help prevent infection they leave the wound open in a few spots so it heals form the inside out. In the gaps the put packing material which is most of what the changing is about.

I was told I wasn’t left open too much but it looked like a horror to me

I was willing to see visitors after the NG tube came out. Jen almost was there to witness the removal. She’s probably glad she didn’t get to see it. Delgato did what looked like a judo move. He grabbed it with both hands turned his back to me an yanked it out pulling it over his shoulder. He used his entire body and his momentum carried him out of the room. And guess what, it hurt despite his claim to the contrary.

I saw Jen, Ken, Nicole, Tess, Mary Ann, Mike, Renee, Kim and Sondra today.

Spoke to Barbara, Mom, Dad, Bill, and Ken. And Margaret called too. I need to contact Barbara Kram and Alan toady. They walked in on me yesterday but I was asleep and still had the NG in.

I’ve been taken off the EKG and BP collar too so slowly being disconnected form the monitoring grid. Still have IV with fluid and antibiotics, Catheter, and thank god for the epidural. Once NG tube was removed I felt better but with that came the need foe more pain relief. But I’m at the maximum (10) does for epidural so they are giving me through IV every six hours something like heavy duty Motrin. It has done the trick for now. And brain still functioning. Next step is morphine.

I’m ready to be moved from this room which has dedicated nurses 24/7 but no beds are open yet. I should see a new more private and quiet room today. Slept well last night. It was less active in here but I also had on my headphones. What I had to listen to was all of Anastasia’s music. Although I was still awoken by things like BP, blood work, catheter empty and beeping still better than last night. I listened to Bindlestick Bill this morning. It was nice to hear a familiar voice.

Once I get moved into my other room I should be ready to see the kids. I miss them. Christina had the brilliant idea to get us all the same Webkins. She says the kids are very excited about this development. We can actually interface with each other on webkins.

Cassie is my nurse for today overnight and she is excellent. Also a cancer survivor so we had a lot to talk about. We’re almost the same age and she has two kids 12 and 14 and is just a nice person and who really knows how to do her job. Have gotten through 2 discs of Dr Katz. Off to number three. Oh, started eating ice chips yesterday.

Thursday already. Time is on my side as it keeps moving forward. Yesterday was a little hectic. I felt exhausted in the morning and doped up. I was afraid to go back to sleep so I had them hook me back up to the BP collar and pulse monitor just in case I flat lined or something. After two nights of trying to sleep in the step-down ward I was getting worn out. Second night was better than the first. I tried sleeping to music through headphones but there’s a lot of activity and people in that room.

Delgato saw me in the morning and put me on clear liquids a step up from the ice chips I had started the night before. He didn’t change my dressing which the nurses assumed he would do and for which I would pay for not having done later. I spoke to Christina over the phone so she could bring a few things over when she came and to tell her how I was feeling. I was going to wait to go back to bed until she arrived which turned out to be a very late 10:00.

The day was marked by many visitors, friends, family, doctors which distracted me from my recovery duties of walking, breathing exercises and resting. I will not let that happen today. Visitors are fine but I need to stay focused on recovery. I saw Reyes, Delgato and Weinberger all today. News was not too bad but not too good either. We were hoping not to need chemo but it turns out I need six month’s worth. One 48 hour treatment every two weeks. Unfortunately, the cancer has definitely spread to the lymph nodes. Reyes was able to get preliminary path results over the phone so nothing is set in stone yet but this regimen is the most likely course of treatment. I really wanted to be able to say I HAD cancer not I HAVE cancer. Hopefully I can say that in six months.

I had a crazy time starting at around 6pm yesterday and ending by 8:30pm. I had visitors trying to get me internet service, my dinner came but they didn’t know I was a vegetarian so I didn’t eat but then that was good because Reyes wanted me to get a chest CT scan which requires 6 hours of fasting. Then I had a small BM, first one since surgery, in my chair then had to go to the bathroom to finish with a soiled gown and connected to the catheter, epidural and IV. While I was in the bathroom my epidural ran out. It began to wear off. When I got out of the bathroom my dinner had still not been changed, internet not connected, Mike went to radio shack to get me a wire and then my dressing needed to be changed. Remember epidural they forgot to continue my other pain med. Then I had to go get the CT scan and be moved around again. Luckily, they were able to use my existing left-hand catheter for the contrast but they had to change out a connection and in the process they made it so I’m in pain from it. They jammed I into my hand so I can’t bend my hand backwards anymore. Not as flexible so I can’t hole things very well or use my hand to get up or down without it hurting. Then by the time I got back from my CT scan my dinner hadn’t been changed and everything that was frozen had melted and that had been warm was cold. After all of that I was in a lot of pain/discomfort and very tired. I couldn’t do my breathing exercises or didn’t want to. I ate my dinner at almost 8:30 and after that I had another BM. Easier this time without the gown change and medication issues.

Finally moved out of step down. Had a good walk. Walked Christina to the elevators. Sondra had brought the kids home from Ken and Nicole’s. The kids were supposed to see me but still being in that step-down and the evening’s ordeal put the kibosh on that. I miss them and they need to see me. Luckily, they were still awake. I had let Christina know I would stay awake so I could talk to them. Oh, I spoke to my parents but I couldn’t talk too long with them. It was great to talk to the kids and they were all excited that we will see each other tomorrow if all goes well.

Related posts:

1. I’m home from the hospital!
2. Another Chemo Setback, Part I
3. Portacath In and Completely Frustrated
4. What is That Pump Thing?
5. Showing a Little Gray