Tuesday, November 14, 2017

Scars...

I was scanning through Facebook posts the other day when I came across this image and decided that I wanted to share it.

I have the wounds. I have the scars. Heck I even added a few more scars yesterday with the latest surgery on my eye. So at the end of all this, what will my story say?

Right now I am kind of a mess.
My right eye is completely covered with a bandage so I can't tell what the eye is going to look like. I can tell you that the doctor did say that healing was going to take three to six months and he also mentioned that it was going to look a "little rough' for a while.
I tried to get some clarity around a "little rough" but he said everyone comes out a little different. It's just that there is a big difference between having dark circles around you eye because you need a nap and what your eye looks like after taking fist to it. A BIG difference.
Well I am supposed to take the dressing off later this afternoon so I will know shortly.

The surgery went as about normal as it could with me. Meaning there was some slight complications. Instead of taking two hours to complete it took three and a half hours. The plan was to fix the bottom eyelash, but when they got in there they found that the top eyelash has started to roll inward also so they needed to fix that one as well. There was also a lot more scaring in the area then they had hoped for so they needed to clean that up before they could continue with the repair work. In the end though the surgeon was pleased with the outcome and feels confident that I have this part of the journey behind me.
The next step will be trying to get both eyes to play nice together again. Which will mean another surgery.

I don't know what my story should say, but this chapter heading should be titled.
Hey Idiot Don't Do This Again!

It's my life
And it's now or never
I ain't gonna live forever
I just want to live while I'm alive
(It's My Life  Bon Jovi)



Friday, November 3, 2017

November..

I am going to take a break from the latest misadventures of Roger to get back to the topic that this blog has been about. My life without a stomach.


You see November is stomach cancer awareness month. It gives me time to reflect and remember why I had my stomach removed. A time to remember why all the trials and complications were worth it.


Don't get me wrong there are days when not having a stomach really sucks and the upcoming holidays will magnify the suckness of the missing item. The office will be lined with treats and there will be the traditional holiday potluck. All of which I will need to steer clear of.
And before anyone says anything I know that suckness is not a word, but it fit.


Other than that eating is going well. I can eat one to two cups of food at a sitting. I have eaten more and in most cases it doesn't end well. I have found that eating five to six times a day is not realistic for me either so I have become a grazer. I am always eating something.
I make sure that foods I eat are high in protein and until my recent accident my weight had stabilized to a level that everyone seemed happy with. Now however I am working on trying to gain the lost weight back.
I used to get harassed by our family doctor that I needed to lose weight. "Just lose 10 pounds."  So I would lose 10 pounds and she would say good start now lets lose 10 more. Now when I go in it is "let's gain 10 pounds." There is just no pleasing her.

I can enjoy a cocktail or two. However I have found that alcohol effects me differently now that I do not have a stomach. Alcohol enters my blood stream much faster so I have to try to slow down as I drink. Mixed drinks and or wine work best which would be just fine if I didn't like craft beer as much as I do.
Supplements are normal part of my life now. I take calcium pills everyday, and since today is the third of the month, I started my day off with my monthly vitamin B12 shot.


I have had to tell the story of why I had my stomach removed to a lot of folks recently. A surprising number of them have been doctors and/or nurses. When that happens I wonder why they don't know about this CDH1 genetic mutation and it's link to stomach cancer. They should know right?
Then I remember how rare this is. In 2010 there were an estimate 110 families with the genetic link to cancer in the world. Recently I read somewhere that this number may have climbed to between four to five hundred families in the world. that is a huge increase, but in terms of the number of families this represents, it's the equivalent of a rounding error.
However we are making progress.
On November 11th, there will be a symposium going on in California surround stomach cancer and a stomachless friend of mine will be one of three people speaking there. There will be folks from all over there, so we are making headway in or quest to educate those who need it. To offer support those who need support, and raise money to one day break the link between this mutation and cancer.
Everyday brings us one step closer.


Happy Stomach Cancer Awareness month!

Like the fool I am and I'll always be,
I got a dream, I got a dream.
They can change their minds but the can't change me,
I got a dream, I got a dream
Oh, I know I could share it if you'd want me to,
If you're goin' my way, I'll go with you.
(I got a Name  Jim Croce)

Wednesday, November 1, 2017

Next Steps

So I spent part of the day with an eye surgeon where the sentence "Well, I got some good news and some not so good news for you". "What do you want to hear first?" was said.

Since I am an optimistic sort of guy, and it was early in the morning... I took the good news first.

The good news is that they can fix my eyesight. At least they feel they have a pretty good shot of doing it. There ended the good news.


The not so good news was that in order to completely fix my eyesight, it was going to take multiple surgeries. Now I knew that so that comment in and of itself was not unexpected. When I met with the University of Minnesota specialist, he said that they were going to have to do a few surgeries to get everything corrected. So hearing that today was anticipated.
The part I was not expecting was the urgency they are placing on the first surgery they need to do. It has nothing to do with the double vision and they are not going to address that until they get the first issue corrected. It also needs to be corrected soon or I could loose my vision all together in my right eye.
What is the first issue you ask? My eyelid. They are going to "rebuild" my eyelid.


After the second surgery on my eye, scar tissue built up under my eyelid which cause my eyelid to roll in on itself. When this happened my eyelashes were in direct contact with my eye and rubbing on it. When they did the third surgery, they made a small incision and rolled the eyelid back out. They then sewed the eyelid shut in hopes that it would heal that way. It didn't and the eyelid has rolled back in even further then it was before. The problem with this is that the rubbing on the eyeball will cause damage to the eye that is not reversible. They need to fix that ASAP.

The plan is that they are going to harvest tissue from my side and use it to replace the scared tissue under my eyelid. This will create a cushion behind my eye and prevent the eyelid from rolling back in again. According to the specialist I saw today this needs to be done now, so I can only imagine that I am not going to get a lot of time between receiving the phone call to set the appointment and the actual date of the surgery.


On a more humorous note.
The doctor was being very careful to explain exactly how they were going harvest "tissue" from my side to do the procedure. He was going on and on about for a bit and I couldn't take anymore. I told him I was running out of space in my skull for the stomach fat that everyone was putting in there. He just looked at me and stared. Some folks just don't get sarcasm..
What you are thinking?
A number of years ago I had a brain tumor. When they did the surgery to remove it they needed to fill the hole they made with something, so they harvested fat from one side of my stomach to fill it with. Now they are going to use fat from the other side to fix my eyelid. Now with all of the weight I have lost, I am running out of fat cells and with a second set of fat cells needed to fix my face, I am running out of space in my skull and face for additional fat to be added.


Things just keep getting more interesting.....


Hey listen here
Now I got mortgages on homes
I got stiffness in ma' bones
Ain't no beauty Queens in this locality (I tell you)
(Fat Bottom Girls   Queen)

Saturday, October 21, 2017

Taking A Break...

I wanted to post a quick update.
If you hadn't figured it out, I am taking a quick break from all of the medical crap going on with me right now. In fact Edie and I are in North Carolina visiting Jenny, Sam and Remi. It took a bit for the little guy to get used to seeing me with the eye patch on but all is good and he could care less.

For the most part I feel fine. My right eye is still pretty much useless. I wear an eye patch or just keep it shut all day. The eye lashes have rolled back inwards, it doesn't hurt as bad as before, but still irritating none the less. My right eye is far enough out of alignment that using it is impossible and the double vision give me a nasty headache within in minutes.

This week I have another appointment with the surgeon but they don't have an answer for the double vision. The plan is to head to the U Of M and meet with their optical specialist going foreword.

But until then if your lookin for me, I am in Carolina.






Wednesday, October 4, 2017

Surgery one step forward....

Apparently the surgery was a success. "Couldn't have gone better." At least that is what they are telling me.I don't know. I still have double vision. At least I do when I can see out of my right eye that is.
In order to help with healing, with the exception of one small section, they have sewed my eye shut. The appointment for removing the stitches is tomorrow so we will see how my vision is once I can see with both eyes again.


One of the side effects of having my eye stitched shut is that the stitches cause my my eye to weep all the time. With the weeping comes the crud that forms in the corners and along the bottom of the eye. if it doesn't form into crud, it runs down that side of my face. All in all it is not a lot of fun and I cant wait for the stitches to come out.

The other problem with all this weeping and crusting is having a goatee. All the crud and the goo ends up in there. I scrubbed and scrubbed trying to get keep it clean but it proved to be way to much work. So for the first time in close to 20 years, it is gone.
Don't know if I like the look.
Edie hasn't seen me yet.
The last time I took it off Maddie was very young and she fell on the ground laughing and pointing at me.




I am hoping for a more positive response this time.


We will see.


I’m starting with the man in the mirror
I’m asking him to change his ways
And no message could have been any clearer
If you wanna make the world a better place
Take a look at yourself, and then make a change
(Man In The Mirror  Michael Jackson)


Thursday, September 28, 2017

Last Few weeks... Part 4 Friday Appointment

Here I go again.....
Tomorrow morning at 7:30 I go back into surgery. I have added them up and this will be my 4th surgery and 17th time I have been fully sedated since August 2015. I’d cry “UNCLE’ but I am so far beyond that it is ridiculous.


So there are two goals for tomorrow’s procedure. First is to put a custom plate in that should be able to hold my right eye in place. They found someone who was able to create the plate and now I just need to get it installed. I am assuming that since it is a “custom” plate that they are going to charge me a pretty penny for it and in my opinion should probably come with “free installation”. It won’t, but one can hope. The best that I can hope for is that it will fix the double vision and allow me go back to being able to see through both eyes at the same time. I haven't been able to do that since the accident.
Second is it roll my eyelash back out. According to the surgeon there was less than a two percent chance that after the first surgery scar tissue would cause one of my eyelids to roll back in on itself so that my eye lashes were in contact with my eyeball.
Less than two percent chance, huh… He had only seen it once before, huh…. He wasn’t worried about it, huh… Shouldn’t be an issue, huh…
Very rare…. RIIIGGGHHHTT..
Now he has seen it twice. It’s not a lot of fun let me tell you. My eye always aches and waters consistently. They will fix that also.


I am both excited and worried about this surgery. Excited to be able to use both eyes again. I am going on almost two months without being able to use my right eye. Two months with having daily pain in that eye even when I don't use it. I wear a black patch on it as often as possible and when the patch is not on that eye has to be closed. It makes doing most things difficult. I can see out of both eyes, but since they are not aligned it makes using both at the same time impossible.


I am worried about the “what if’s”. What if this doesn’t fix the problem. What if I do this and after surgery tomorrow I still am still seeing double. I have discussed with a couple of doctors my options if that does happen and I really don’t like any of them.

A lot riding on tomorrow.



I come around all broken down and
Crowded out And you're comfort
Sometimes the place I go
Is so deep and dark and desperate
I don't know, I don't know
(Every Day   Rascal Flatts)

Friday, September 15, 2017

Last Few Weeks..Part 3 What I Learned Doctor Visits

So How did yesterday go?  Some good news, some not so good news. Seems to be the story of my life recently.

First the good news. And the shortest part of the update. The brace is gone!
After 6 weeks of having to wear a stiff plastic brace 24/7 I am now free of it. My neck is still sore, but only due to lack of movement. The brace was made to restrict my movement and let me tell you it worked just like it was supposed to. I am so happy to be rid of it.

Now the not so good news.
Both doctors I saw today, took one look at my right eye and could tell that it moved. My right eye has slide back and dropped some in the eye socket. They didn't need tools to tell. They had me open both eyes and could see that they eye had moved. The risk here is that they need to get it put in place as quick as they can before there is any damage to the eye. Like I said the not so good part of the day.
Next came more disappointing news. They can not schedule the next surgery as of yet. They have not been able to find any place to have the custom plate made. The regular plates that they have work 90% of the time, they just wont work for me. Go figure.


So what's with this plate? Well to explain that you need to see what shape my face is in (see image). Now this image was taken after my first surgery, but before the second emergency surgery.
The bumps you see along the left side of the image are the plates that were used to rebuild that side of my face. They are all still in place where they are supposed to be with the exception of one plate and that is the one causing all the problem.
It is really hard to see, but there is a plate on the bottom of the eye socket on that side. That plate is the one that needed to be remove during the emergency surgery. It was binding with the tissue around my eye. Without that plate my eye is just sitting in there with no support. That is how it has been able to shift it's position

Now in case you wondering, I did ask about the chance of my eye just falling out and they assured me it wouldn't happen. That would be awkward.

So what is next? On Monday, the surgical team will be meeting with another vendor they feel can create the plate. They will use a mock up of my eye socket that they created with a 3D printer and work to fit the custom plate into the mock up first. Once they are comfortable with the fit of the plate they will schedule the surgery.
My feeling I get is that they are going to try to move fast on getting me in and the plate put in place. I can only hope so, this one eye thing is for the birds!
And I wait....

Long promised road
Trail starts at dawn
Carries on to the season's ending
Long promised road
Flows to the source, gentle force, never ending, never ending
(Long Promised Road   Beach Boys)