Trying this again.

The good news is that I am home again.  I was released from St. Mary's on Saturday. My goal right now is to eat and drink. I need to slow the weight loss and keep myself hydrated. I really do not want to spend any more time in the hospital, but that remains a very real possibility. I have a follow up appointment with DR. Kendrick's team on Wednesday. Depending on how that appointment goes will determine where I end up Wednesday night. I am really hoping for sleeping in my own bed that night

The problem is that it is hard to continuously eat and drink when you don’t feel good, especially after eating and drinking. Your insides are trying to figure out how to process the stuff you put in it. You don’t have a stomach to regulate how much food goes into you intestines, so you cramp and ache.  They tell you to stop eating when your insides hurt, but that seems to happen the moment you begin to eat. You also need to keep your calorie count up and you can’t do that if you are constantly stopping after a few bites.

So in the end, this all stems from nausea. When I was sent home the first time I was not sent home with any anti-nausea medication. This time I have three different ones available to me. I am halfway through day number two without throwing up what I eat. I will take that as a positive sign that things are starting to turn in my favor (knocking on wood). 

Now I just need to keep eating..

WTF... 3 weeks post surgery and I am back in the hospital

I should be home, but I am not.
I should be eating but I am not.
I should be off pain meds, but I am not.

It all started on Friday, then escalated Saturday. I was struggling eating simple foods.  Even things that I ate I'm the hospital would not stay down.  So it was hit or miss, try something new.  Sometimes it would work, sometimes it wouldn't.  I was home though, which felt good. 

Saturday night, or actually Sunday morning, just after midnight I started getting sick.  I hadn't eaten much so it was mostly the dry heaves  they lasted until 5:30.  For the most part I slept on the bathroom floor. By anyone's standards it was a miserable night. I though I could tough it out, but when it started up again around noontime on Sunday, I was done. 

I called the Mayo hotline number they gave me and their response was that I needed to be re admitted, and they wanted to know how fast I could get there  we arrived around 3:30 on Sunday and I am still here.  Yesterday they gave me a Popsicle, some cranberry juice, and ice chips, and none of it stayed down.  Today I was given a Pic line and they will start supplying nutrients through that this evening. I am still not eating solid food and am now down 30 pounds.

They checked for a twisted bowl and it was negative.  The checked for a blockage or a narrowing of the esophagus and it was negative.  I have had C.T. scans, X-rays.  I have poked, prodded, picked at and stuck yet still no relief.  

This is getting old really fast

Looks like I will be here for a while.

And I'll drink and dance with one hand free

Let the world back into me

And on I'll be a sight to see

Back in the high life again

(Back In The High Life Again.  Steve Winwood)

A little sumpin sumpin to start your weekend.

Results on biopsies.

Stomach.   No cancer or precancerous cells found.
Lymph nodes    No cancer or precancerous cells found 
Barrett's esophagus area.  No cancer or precancerous cells found

So I got that going to me, which is nice!

All I need is some good news 
All I need is some good news 
To put me on my feet 
To put me at ease.

(Good News.  10CC)

Week 1

First week at home.

I have been home now for just over a week and how am I doing? 

Positives.

I am almost off pain medication.  Since leaving the hospital they have had me on two strong narcotics that were kind of nice, yet had some nasty side effects.  So I am completely off one and only down to taking one of the Oxycodone at bed time.  I am trying to manage my discomfort with Extra Strength Tylenol.  My goal is to be off the pain meds tonight or tomorrow. 

Am I pushing to fast to get off them?  Maybe.  But I have a goal.  I want to be able to drive my car again, which I can’t to while on them.  I want to be able to poop freely without stool softeners or prune juice, which I need while on them. But the number one reason is that I want to enjoy a cocktail again.  Not that I need to have it, but I want some semblance of my life before the surgery to return.  Most likely will not be a beer or a long island, but I would like to sit on the deck once more and enjoy a nightcap.

I have slowed down the weight loss.  I am down another pound and a half, but since I dropped almost 8 pounds over the first couple of days, I will take that as a sign of slowing.  Now down 21.5 pounds since the day after my surgery.

Negatives.

I miss sleeping on my stomach or even on my side.  I sleep on my back, or I pay the price.  Your stomach has a flap that keeps the contents of your stomach from re-entering your esophagus.  When you sleep that is closed and all is well.  They removed mine with the stomach.  So if I lay down and for whatever reason my head slips below the level of the rest of my body, whatever is in there comes back to visit me.  If it makes it to your lungs, then you will spend 15 minutes or so in the bathroom in incredible pain.  It has happened to me twice this week.

I haven’t gone a day without my body rejecting something I ate.  It may be something that I ate just fine yesterday, but not today.  I wish I could go 24 hours without having something not coming back up.  I mean simple pleasures like popsicles.  I had them all the time in the hospital.  Yet since I have been home it has been hit or miss as whether or not they stay down.

I have called the help number at the Mayo clinic three times this week, looking for answers to help me get by.  The good news here is that they have not threatened to block my number yet.

I have spent three and a half hours in a local emergency room getting fluids because I was dehydrated.  I was also told that I am not eating enough and was showing signs of malnutrition.  Seriously did you read point one here, I am shoving all sorts of things into my mouth, yet the problem is that the food is not staying down.

I guess we can call it.  Transition week 1, Roger 0.  I will move on to week two.

so why would you care
to get out of this place
you and me and all our friends
such a happy human race
'cause we're tripping Billies

(Tripping Billies  Dave Mathews Band)

The first 48 hours or so home

OK, so I used a lifeline, or called a friend as it was called on the game show "Who Wants to Be a Millionaire".  I had been home for just over 48 hours and was struggling to get myself on a schedule as far as eating, sleeping and taking my meds goes. So I spent part of Wednesday night on the phone with my sister Melanie who also had her stomach removed. Then part of last night with doctors from the Mayo Clinic. I get that there is still pain involved as my body continues to heal, but there was something else going on and nothing I did worked, so I needed help.

I know that my sister Mel had gone through some of this so she was my first call.  We talked for about a half hour or so and she may have left the conversation feeling that she did not help, but she did.  I just wouldn’t know it for 24 hours. More importantly, it was just great to hear her voice. 24 hours later I broke down and called the Mayo Clinic hotline number I had been given and within minutes was talking with one of the doctors who had handled my case while I was down there.  An amazing service by an amazing facility. 

I would go into what was going on physically, but it really is disgusting. It involves flem, mucus, throwing up every time you eat, but it is early here and none of us really need that at this time of the morning.  Both Mel and the doctor talked about gas and how I could still have gas trapped inside of me from the surgery.  Mel talked about a Gas-X product that just dissolved under your tongue but all we had were the pills. I hadn’t been able to keep anything down so the thought of swallowing another pill held no appeal to me.  I would just tough it out until we could get some.  Needless to say I did not make it and finally took one of the pills last night around 8pm.  Almost instant relief.

I had also been having trouble sleeping since leaving the hospital, I just couldn't get comfortable. I would get an hour here or there but that was it.  Melanie recommended this product called the wedge pillow and it is just what it sound like, a pillow in the shape of a wedge.  Last night I had my first, uninterrupted, 4 hour sleep. It may not sound like much to you, but for me it was a slice of heaven. 

You see, sometimes you just need a lifeline.

My wife Edie has been amazing through all of this.  She keeps asking me about my meds, if I need to rest or when was the last time I ate anything. It is just that the answers to those questions are difficult to say the least. She has been a trooper and went along when I would ask to go outside for walks during this heat.  I have to admit that the last time was just so I could walk through the sprinkler system running outside.

This is my transition week. Can I go from being the old Roger to the new Roger without having a bevy of nurses and doctors around?  So far the answer to that question is no, but I am getting better.  

For those who want to keep score, I have lost 20 pounds from my first post-surgery weigh in on August 5^th.

What would you think if I sand out of tune

Would you stand up and walk out on me?

Lend me your ears and I’ll sing you a song

And I’ll try not to sing out of key.

Oh, I get by with a little help from my friends

Mm, I get high with a little help from my friends

Mm, gonna try with a little help from my friends

(With A Little Help From My Friends  The Beatles)

Chapter One Has Ended,

Well, I built me a raft and she's ready for floatin'
Ol' Mississippi, she's callin' my name
Catfish are jumpin'
That paddle wheel thumpin'
Black water keeps rollin' on past just the same
Old black water, keep on rollin'
Mississippi moon, won't you keep on shinin' on me...........

Yeah, keep on shinin' your light
Gonna make everything, pretty mama
Gonna make everything all right
And I ain't got no worries
'Cause I ain't in no hurry at all

I'd like to hear some funky Dixieland
Pretty mama come and take me by the hand
By the hand, take me by the hand pretty mama
Come and dance with your daddy all night long
I want to honky tonk, honky tonk, honky tonk
With you all night long
(Black Water  The Doobie Brothers)

Thanks you for all the well wishes and prayers......
I'M GOIN HOME!

So.. What went wrong? (warning.. Post operation image included)

Where do I start?  Short answer seems to be nothing.

For example, the surgery.  The surgery was supposed to be done laporscopicly.  Five Incisions, three for tools and a camera.  Then two to take out my stomach and to connect my new plumbing. Easy, Peasy.

However, once the got my stomach removed they found that the connection of the intestine to my esophagus could not be done laporscopicly.  Too much tissue and stuff in the way to pull it off. So the decision was made to open me up.  One cut center of my stomach, seven inches or so and the rest of the work was completed there. I can remember waking up in recovery and arguing with the doctors that they had not done that and they were wrong. I lost that argument. At the end of the day all it does is increase my healing time, but I really didn't want that scar messing up the six pack I planned to put there. 

So what happened during gutless days three and four? 

As I mentioned in my last post I was moving on to puréed food and to be honest the puréed pancakes were fine.  Dr Kendrick came in to check on me and I mentioned to him that I was sweating all the time even after a shower.  His concern was that sweats after this type of surgery can be a signal of a leak.  So off for a C.T. Scan I went.  Worst experience ever. I won't go into the details here, but there are folks here at Mayo having "conversations" about how bad it went. 

Th results from the scan showed a leak.  So what we did not want to see. All my blood work was fine but the leak was there and everything had to change.  No food, no water could be ingested for at least 48 hours.  Drugs could only go in via the I.V.  Then, another C.T. Scan and the we start the whole thing over.  The flooded me with antibiotics and hope that it would fix it or it would be another round of surgery.  I so did not want to have another C.T. Scan.

The rest of Saturday and all of Sunday were about managing pain and trying to keep me from drinking anything. Even without a stomach you still get thirsty.  The pain medication made me sick to my stomach (which I no longer have).  And yes,when someone is eating something nummy you still want to take it from them. Hunger pains or no hunger pains. 

This morning at our second round of doctor check ins, Dr. Kendrick came in and said that something wasn't right.  If I had a leak, then my blood work should show signs of the infection.  So he looked at the C.T. scans again and feels that the "leak" was just a staple used to hook up my new plumbing.  At least he is going to treat it that way until my blood work tells him something different.  

Bottom line is that I am back to having clear liquids and might be cleared to go home on Wednesday.

Yea Me!

But I had no way of knowing

Just how hard this journey could be 

Cause the valleys are deeper
And the mountains are steeper than I ever would have dreamed

But I know we're gonna make it
And I know we're gonna get there soon 

And I know sometimes it feels like we're going the wrong way 
But its just the long way home
(Long Way Home  Steven Curtis Chapman)

So I'm not dead yet, I don't want to go on the cart

Day 3 and 4 gutless.
Yesterday they moved me from a clear liquid diet to a purée diet.  Meaning I can have mashed potatoes and gravy. I have not tried the soup and broths yet, but after yesterday's adventures with food  they seem like a natural switch. I am trying the puréed pancakes for breakfast this morning so I will let you know how that goes.
I woke up yesterday feeling bloated and the pain was intense  they had me on  dilaudid pump for pain that I could push every ten minutes.  I just could never tell the difference and sine I cannot leave the hospital while still using it, I had them take it out. My sister Melanie and her husband Jim came back down to see me, but I hurt so bad I couldn't stay awake.  Sorry guys.
Next thing I knew it was a few hours later and I awoke to find my cousin Kathy sitting next to me.  Wasn't expecting that and it sent me into a coughing fit.  The good news is that it released the gas that was trapped inside.  Hurt like hell but afterwards I felt a lot better.
We topped off yesterday by getting moved into a private room .

Today has started off ok. Dr Kendrick came in and said that if I have a good day today with no pain the there is a possibility that I can go home tomorrow.  So much for that.
They sent me down for C.T.'s and that is where things went backwards real fast.
Now it's three steps backwards. Nothing to eat or drink for a few days  They are trying to get a hold of Dr Kendrick but it looks like I have sprung a leak. Not what I wanteted to hear.  No food or drink until they find out if it will heal itself
Today was by far the worst day here..
Some days suck.

Day 2 Gutless

Well I am up and moving some more. Still on a clear liquid diet though. May try some purée tomorrow though.  Not sure what they will purée, but I will be sure to share it with you all through the fabulous world of the Internet.
Slept a lot yesterday and had some guests.  Maddie drove down to see me as did Mel, Cody and Jim.
I find Myself getting tired really fast.


Had a pretty tough night last night as first I got a roommate who didn't know the meaning of its fricken 2:30 in the morning and I don't care what the republicans are doing.
Second I got dehydrated and had to have a catheter put in around 3am. So forgot how much fun they were to install.

This morning they took off the bandage covering my new scar 6-8" of fun.  I will need help coming up with a new story for that one.

There is nothing that is wrong

In wanting you to stay here with me.
I know you've got somewhere to go. 
(Lay down Sally. Eric Clapton)

Officially gutless

I am back, kind of anyway.  I just wanted to say hi and thanks for the support.

I am still on a liquid diet due to the fact that they ended up having to open me up to do the surgery.  The original plan was make 5 small two inch incisions and remove my stomach through one of them.

I wifi be in the hospital another day longer, but all in all am glad for the procedure to be over and for strong drugs

Until later..

Roger...Table for 1.. Your reservation is waiting

Good evening.
It is 8:20 pm Rochester time and I have received my time for surgery tomorrow.  My surgery is set for 9:30 am tomorrow at St. Mary's Hospital in Rochester.


I will be the second operation that Dr. Kendrick does so hopefully he gets the kinks and bugs out of his system during the first one.  Those were his words not mine! Needless to say he has a great sense of humor and took sarcasm extremely well when we met this afternoon.
I can tell you that I do not have to start my fasting until after midnight, so I am having a beer.  They said that it was OK..  At least a couple of them, but not too many.  Please define for me the words "not to many"..


I may not be posting anything for a day or so, so thank you all for your support.

Edie will post on Facebook when I am out of surgery and OK.

Other than that...  I will talk to you all on the flip side.

Time is wasting, Time is walking
You ain't no friend of mine
I don't know where i'm goin'
I think I'm out of my mind 

(Time  Hootie and the Blowfish)

And then there were none...

No more events.
Today is a day of rest and off to the Mayo Clinic tomorrow.  The month of Roger has came and left with the Hanover Harvest Festival and the fireworks of last night.  An amazing day filled with friends, food, fireworks and a roaring bonfire.  Thank you to all who were here and those who were here in spirit. It was an amazing day!

This isn't going to be a long post.  As you can probably imagine, the stress of the situation has taken control. Our plan for today is to just sit back and relax today. Tonight, the pizza light gets turned on for the last time, for at least until I can learn to eat pizza again.  I hope that we can start to turn it back on sooner than later.

I still do not know what time on Tuesday the surgery is. We will find that out tomorrow and I will post it here.

Have a great Sunday everyone.

"in a lunch pail town in a one horse way
you can live like King and Queen.
Let's steal away in the noon day sun
It's time for a summertime dream"
(Summertime Dream  Gordon Lightfoot)