Wednesday, May 9, 2018

Spare Parts Anyone?

Do you know that there is a lab at the University College London that is called the “Human Body Parts Store”?
There is also a place called the “Anatomy Warehouse” where you can shop for body parts on line. Everything from heats, brains, bones, livers and kidneys.
Having this type of service available back in the day would have made Dr. Frankenstein’s “experiment” go a lot smoother. He could have even paid with PayPal and got the points.

Why would I bring this up?
Well I am going back into surgery on Monday.
This time they are going to put another cadaver bone it. Another I say? Yep.
The first one was to replace the smashed plate underneath my eye that holds the eye in place. Well that one didn’t work so they took it out. They then used a 3D printer to create a replica of my eye socket and then built me a custom plate and put that one in. It was made out of a cadaver bone. Well then they decided that wasn’t working so they took that out and replaced it with a leveling wedge (Not sure what that was made of though, but most likely a cadaver bone). Now they have decided that they are going to have to go back in, leave the wedge in and put another cadaver bone in.
And yippee me, and as a bonus, I get to have my eye sewed shut yet again.

So why this surgery.
I am losing vision in my right eye.
The vision is leaving slowly, but quickly if that makes any sense. A few weeks ago I noticed that there were times when I would have problems seeing out of the damaged eye. It would be blurry or so dark yellow that I couldn’t see anything. So I would blink a few time and most of the time the vision would clear. Now this is happening all the time. My vision is always blurry and it gets a little worse everyday. The images I do see might be flooded with dark yellow, red or grey. I can blink all that I want and it doesn’t clear up. This all happened in a matter of weeks.
To top that off my eye lid rolled back in on the eye again. That’s like the fourth time that has happened.
Now the right eye wasn’t aligned with the left so I don’t use it all that often. And I am getting used to seeing out of one eye, but I was still hoping for different ending to this little misadventure. The folks at the University of Minnesota are still working on it, but my confidence in a positive outcome is waning.

I was kind of looking forward to the next surgery because it was supposed to be the big one where they work on aligning the eyes again. Now with this latest setback that surgery has been pushed back indefinitely and two more surgeries have been added. So I will be having this one on Monday. Then we can schedule the alignment surgery 3-6 month later and then a third surgery after that to fix some  cosmetic issues with the eyelid.
The problem is that the last two surgeries will only happen if this upcoming surgery on Monday is a success. If not all bets are off.
I really don’t want to lose my sight in that eye.
It would really suck.

Hold it all together, Everybody needs you strong
But life hits you out of nowhere, And barely leaves you holding on
And when you're tired of fighting, Chained by your control
There's freedom in surrender
Lay it down and let it go
(Just Be Held   Casting Crowns)

Tuesday, March 27, 2018

When Stomachless And Causing Problems Pays Off

Quick Update From Yesterday's Surgery.

As far as we know the surgery went fine. My eye is sewed shut and will remain so until next Wednesday. So once we understand how the eye is working we can plan our next move.
This is my fifth or sixth surgery since the accident. Before each surgery I have mentioned to the surgical team that I do not have a stomach, we talk about why and then it is never mentioned again.

That is until yesterday.
I was told by a couple folks to make sure that the Anesthesiologist knew about it. So when he came in and did his spiel I told him that I had a total gastrectomy and about some of the challenges that could bring. He asked a lot of questions and said, "Ok that is important to know, thank for telling me" and excused himself (they were still working on getting the I.V. started).
When the Anesthesiologist returned he notified me that based on what I told him he was changing how they were going to change how they managed my health while I was out. Like I said earlier I have had a few surgeries with this misadventure, but this is the first time anyone came in and told me that they were changing my care due to the fact that I told them that I was stomachless. They may have changed it, but if they did they didn't tell me.

What did they change? The concern was something coming back up the esophagus and ending up in my lungs. So if I remember this correctly, instead of using medicine to make sure that nothing comes back up the esophagus, they made the decision to put a breathing tube in to block any chance of something ending up in my lungs.
I can only believe that the other teams did similar things but just did not inform me of it. This was the first time that someone came in and said I am going to change what I do based on this information.
I guess it pays to be a pain after all.

By the way to put the wedge they had to remove the custom plate. So I asked about the custom plate that they put in and if they were going to save it in case that for some reason this surgery went bad. The plate was made with a cadaver bone, so the short answer was no you couldn't save it to use again at a later date.
His question to me? Do you want it?
Heck Yea!

Everyone is helpful, everyone is kind
On the road to Shambala
Everyone is lucky, everyone is so kind
On the road to Shambala
(Shambala  Three Dog Night)

Saturday, March 24, 2018

Stomachless and causing problems.

One of the problems being stomachless is that people don't understand it. 
The concept of living without a stomach is completely foreign to them. You are constantly explaining why you don't have a stomach, how your plumbing works, and how your life changed after your total gastrostomy.
I would like to say that this limited to the everyday person on the street, but many medical professionals do not comprehend it either. It is just not that common of a surgery and CDH1 mutation, where the number of affected families grows every day, is still very rare.

Due to this you end up becoming your own health advocate.

For example.
This past week I received a call from the U to go over the prep and details on Monday’s surgery. You know details like where the surgery is being done. When the surgery is. What time I need to show up. Reminding me that I need to get a pre-op exam before Monday. All pretty normal stuff.
Then they told me that I could only drink clear liquids and have nothing to eat after midnight on Sunday.

Well there is a problem.
It is not that this is anything new. I knew they were going to say it. This is not my first surgery. What changed was the time that this surgery was going to take place at. Before now all of my surgeries/sedations (insert dilations for strictures here) have been right away in the morning. This surgery is not scheduled until 2:30 in the afternoon. I don’t have to show up before 1:00PM.
The surgery is one hour long, with and they estimate an hour in recovery.
So if I eat right after that, I will have gone almost 17 hours without eating and that is if I eat just before midnight. Not a big fan of eating that late. So it will probably be closer to 20 hours without food, if I eat around 9pm.

For someone without a stomach that is bad. We need to eat often, in small quantities. As I have mentioned before, what works best for me is to graze all day. I usually have one meal so to speak, and then just munch my way through the rest of my activities. It works for me. My weight has stabilized and even if I go three or four hours without food I am fine, In this case we are looking close to 20 hours without food and that is if I feel like eating right after the surgery. I am not sure I am going to be up for that.

So I let the scheduler know that this timeline would not work for me and asked if this was a hard and fast rule that I couldn’t break or was there some wiggle room with the midnight timing. I went through the whole stomachless thing and she did not know what to say. I get that a lot.
She asked if it was possible to “eat a large meal as my late meal to carry me over?” I explained to her that there was no such thing as a large meal for someone without a stomach so she would have to come up with a better plan. She said she would have to get back to me and with that we ended our conversation.

In the end I got a call back a few hours later with some options.
None of them were great options, but options none the less. The midnight thing is just something they tell everyone. It covers them no matter what time the surgery is. The actual number is closer to eight hours. Well they actually said eight hours, but they said eight hour before I checked in, not when the surgery was scheduled for. We agreed to disagree on that topic. On their timeline I can get up and eat as long as I do it before 5AM. Not gonna happen.
I talked with my doctor and she suggested that I get up as early as possible and if I felt like I needed something have a piece of toast and her words “don’t tell them, you should be fine.”

I learned a number of years ago that I needed to become my own health advocate. Too often in today’s world we get told standard answers that covers the person answering the question no matter the question or the industry you are asking the question of. If these medical misadventures have taught me anything is that you need to ask why. And if you don't like the answer ask again and again until YOU are comfortable and satisfied with the response.
In the end it is just about you.

I will post something after Monday’s surgery. Thanks for stopping.

These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel
(Why  Annie Lennox)

Wednesday, March 21, 2018

"Sometimes I just think funny things" Dudley Moore, Arthur

So at the end of my last blog, I made the statement that:
“Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.”
Remember that?
I thought it was a funny line so I added it.
It was just supposed to be a funny thought.

Then there was today.
Due to a bunch of different reasons I am moving my care to the University of Minnesota from North Memorial. This has nothing to do the with the care I received from North Memorial they have been absolutely amazing top to bottom. It is just better for my family and I if we move to the U at this point in my recovery.

I met with the DRs from the U of M this morning.
The next surgery is scheduled for this coming Monday. They are going to go in, remove the custom plate that was put in and put then replace it with the wedge. The wedge will raise the eye and move it forward. Once done then they can go in and work the muscles around the eye to get everything into alignment.

That is where the conversation got a little wonky.
Once I heal, a second surgery will take place. A different doctor will handle the procedure to do all the aligning. They are going to go in and make “adjustments” to the muscles surrounding the eye to get it as lined up as possible. They will then close me up and move me to recovery.
Once in recovery they will make the final “adjustments” to get the eyes lined up once again for single vision.
Adjustments in recovery you ask?

Remember the comment about going in and adjusting the headlights using the screws?
The statement I thought was funny.
It was just supposed to be funny.
Yeah, that is what they are going to do, sort of.

I will not have screws, but they are going to attach surgical thread or something to the muscles surrounding the eye.
Once in recovery they will then pull on each thread/string/wire/clothes hanger/whatever separately until they get the eye in a place where it lines up with the other one and I have single vision again.
Sounds painful.
My hope is for good drugs.

And I love the clothes I wear
Where their life goes I don't care
It's my price I'm proud to pay
I'm a freak
(Freak   Kiss)

Wednesday, March 7, 2018

Chasing Squirrels... A Medical Update

Now I might be aging myself a little bit here, but remember the round/square headlights on the older cars?
For one reason or another one would get out of whack and it wouldn’t look down the road quite right.
My dad would always ask me if I was chasing squirrels with that headlight because it was always running pretty high up in the trees. It was his subtle way of telling me to fix it.

So I kind of have a headlight/eye out of alignment. It is not up chasing squirrels in a tree out of whack, but out enough that I cannot use the eye. I have to wear an eye patch pretty much 24/7.
I have had five surgeries on that eye and have been working on setting up the sixth. Now I haven’t posted for a while and thought this might be a good time to give you an update on where my recovery is at.

Now this particular story starts with a comment about someone else.
Recently I was meeting with the surgeon who is, scratch that, was going to do the next round of surgery. The surgeon was saying all the right things and she was confident in the procedure, but then she made this comment;
“I was just talking with the lady in the next room and I was able to tell her that I was 90% sure that I could fix her problem. I am nowhere near that with you. My goal is to see if we can create a sweet spot in your vision field that you can function with.”
I think I will be getting another opinion. Thank you!

So I headed to the University of Minnesota and met with an eye surgeon there. Regrettably the news didn’t improve much. They ordered a new CT Scan which I had the next day. The team there that is going to review the CT scan and then let me know how they would proceed. However right off the bat they told me that they may need to rebuild the eye socket again. The concern is that my right eye is significantly lower and sunken further back than my left eye. Due to this the surgeon I met with doesn’t feel they could adjust the muscles around the eye enough to get it into alignment. He still needed to see the CT Scan and meet with the rest of the team, but that was his initial thought.

So I met with The DR from the U last Thursday and had the CT scan done on Friday. On this past Monday I met with the surgeon who did the last round of surgery at North Memorial and he concurred…… 
With the U of M….
At least kind of...
Like at the U Of M, he doesn’t feel that the muscle surgery will work because my eye are too far off kilter. His recommendation though was different. He wants to go in and put a wedge in to try to get my eye to align. A wedge?

This will give you an idea as to how tired I am of all of this, this is what popped into my mind. I picture one of those wooden leveling wedges that you use on door and window frames and the DR. with a hammer just tapping it until he thinks it’s level and then snapping off the excess.
Then once that is completed they can go in with a screwdriver and adjust the alignment screws on the sides like we did with the automobile headlamps.
It could work.
And the squirrels could rest.

I've always listened to your point of view
My ways I've tried to mend
And I've always been a patient man
But my patience has reached its end
(Blue Morning Blue Day  Foreigner)

Wednesday, February 21, 2018

Not A Long Post.

Just so you know I write this with a heavy heart today.
Why do we do what we do???
This question is a question that I have asked myself time and time again. What if I hadn't made the decision to have my stomach removed. Where would I be right now?

I think about it a lot at these points in time. Times when life reaches out and slaps you across the face saying you got nothing. You see a young lady I had a chance to get to know some died on Monday. From brain cancer. She was 26 or 27. Way too young.
Now on Saturday I will be going to a funeral. For someone I had recently gotten a chance to know, to support the guy she was supposed to marry and pay respect to folks I didn't know.
All along knowing that I survived, but I am not sure why.

For those of you who know me, know that I had a brain tumor in 2010. In the end the tumor came back benign. I now know two other people who had brain tumors, neither were benign and both are gone now. First Mike and now Allie. It really sucks. Cancer sucks.
Why was mine benign where there's were not. Why am I still here, when they are not?
What happened in my life to make me miss the shit that comes with cancer.
Don't get me wrong, I am happy it passed me by, but I wonder why me?
My tumor was benign. Case closed. I have had six MRI's and the tumor has not reappeared.

Then in 2015 I had my stomach removed due to crappy luck. The crappy luck part was that my little sister had to get breast cancer in order for me to find out that there was a 86% chance that I would catch a terminal cancer. She had to endure so much. She had to go through so much.

It is just at times like these I wonder what happened? There are no answers. Life just happens.
Cancer just sucks.

Please don't feel like you need to post anything to this blog. Sometimes I need it just to rant a little.
Thanks for listening...

Pack my bag and let's get moving
'Cause I'm bound to drift awhile
Though I'm gone, gone
You don't have to worry
Long as I can see the light
(Long As I Can See The Light  Creedence Clearwater Revival)

Saturday, December 30, 2017


As 2017 heads out of town, I thought I would throw a little levity towards at year that has been particularly tough.
Do you remember the TV show cheers? The opening music sang about how everybody wants to go where everyone knows their name.

I think deep down we all want that place somewhere in our life. Whether it is your local restaurant, favorite bar, store, or place of worship we all want that place where they know you. I mean really know you.

For me that is the River Inn in Hanover.
They call me by name. I get hugs. The owners know me. The staff knows me. Other patrons know me. They know what I like to drink and where I like to sit. They know what I have been through over the past few years and they check up on me. It's my place.

Now where your place is and at what level they know you at is very personal. You get to decide where it is and how well you want them to know you. And everyone's place is different for personal reasons. Once you have chosen this place and they get to know you then the place becomes special. And since you chose it, it become in a sense your place.

Well except for when it isn't, so let me tell you about yesterday.
I got a new place where they now know me by name. I didn't pick it. If I had a top ten place list where everyone knows me, it wouldn't had made that list either.
They know me by site and get my order ready when they see me.
This location pretty much sums up the last few months of 2017.
The place?
Walgreens pharmacy.
Yep I pulled into the drive thru to pick up a new prescription and before I can get my window all the way down the lady goes "Hi Roger, I have something for you." She then disappeared and came back with my new prescription. You know the year has been tough when the pharmacist knows you by name.
Here is hoping that 2018 has less pharmacy visits than 2017.


Sometimes you want to go
Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.
(Where Everyone Knows Your Name.  Gary Portnoy &Judy Hart Angelo)