Monday, September 7, 2015

Hey, I might just pull this off!

Happy Labor Day everyone. I hope wherever you are that you are having an amazing end to your summer. 

Things here are going really well this time.  I am, for the most part, off of pain medications. Unless I eat the wrong thing, or too much of the right thing, I do not need them.  I still have a shelf full of medications and supplements that I need to take, but I am pleased that the pain meds are for the most part gone.

I am still losing weight, but even that has slowed down to a manageable level. I have lost two pounds since leaving the hospital over a week ago.  Managing my weight by counting grams of protein instead of counting calories has helped a lot. 

I still struggle though with eating and keeping myself hydrated. I feel that will most likely come around as these next few weeks progress.   

For food they want me eating small amounts every two hours or so.  The catch is that I cannot drink anything one half hour before I eat, or for one half hour after I eat.  That makes eating and drinking challenging. You are trying to schedule when you eat and when to stop drinking.  Basically I need an hour and a half with no liquids.  I can focus on eating and then once the hour and a half is done, try to catch up on my liquids.

Bottom line is that I spend a lot less time eating and keeping hydrated than I do planning on how to eat and keep hydrated.  If that makes any sense. 

The doctors have pushed my return to work date back to the end of September. So I have another 4 weeks to try to figure out how I am going to continue to eat this way, once I get back to my normal routine.

Tomorrow will be five weeks out from my surgery and it is finally beginning to look like I am turning the corner and starting gain some steam towards getting health again.

Thanks for all your support.

Breathe in deep. Let it out.
Wash the bitterness out of your mouth.
Threes no room left for darkness when, you’re filled with the light it comes out.

(Let It Rain   Zac Brown Band)

Wednesday, September 2, 2015

A few steps forward? Maybe!

We just arrived home from a visit to Mayo and I might have to call this a good day.

First off, NO PICC line.  If my weight had dropped to much, then they were going to restart the PICC line and send me home with I.V.s containing nutrients.  I really do not think I could have handled that.  The thought of being at home with bags of fluid attached to me didn't sit well.  The good news is that my weight was down only one pound since early Saturday and they were pleased.  No PICC line!  First thing that has swung my way so far and I'll take it.

We also now have an updated nausea plan and a new dose of one of the medications needed to control it.  
I now have specific protein goals to help me maintain my weight. I have some new menu options and we will see how they go. They also were able to explain a issue I was having with food coming back up, so I feel good about that. They were not to pleased with the small bag of chips I ate the other day however, but in my defense the bag of chips was given to me by one of their staff members. Not my fault.

The challenge I see right now is keeping hydrated. My taste buds have changed slightly and certain things do not taste good anymore. They say it is normal and it will pass.  I just can't handle the taste of water right now. There is a foul aftertaste that makes it hard to drink and keep down. We are going to be adding lemonade to it for the time being, but they want me to drink a lot, and it is too sweet to do that. If any of you have ideas, I would love to hear them.

And for those who know me well, they said NO to diet coke, long islands and beer.  I tried.


Or would you like to swing on a star?
Carry moonbeams home in a jar
And be better off than you are
Or would you rather be a fish?
(swingin on a star  Bing Crosby)

Monday, August 31, 2015

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..

Tuesday, August 25, 2015

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)

Saturday, August 22, 2015

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)

Thursday, August 20, 2015

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)

Saturday, August 15, 2015

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 5th.

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)