Friday, August 4, 2017

Two Years And Counting Through A Different Set Of Eyes

So today marks two years without my stomach. I had a couple of things I thought about writing about, but then changed my mind to give you a different perspective on my journey. I asked my wife, Edie, to give you a different viewpoint into the last two years. A different look at the same journey by those whose lives this also affected.
Hi everyone!
Roger has asked me on the eve of his two year anniversary of having his stomach removed to write from my point of view about the experience. So, here I am.

When we first found out that Roger had the CDH1 gene mutation, he was struggling with the decision of what to do.  He asked me after a couple days, “What would you do?”  I told him that I thought it was a ‘no brainier’, get the surgery done so that you’re here for your kids and grandkids. I’m not sure when he finally decided to go through with the operation or if what I said had any impact, but he did.
Everything seemed to be run of the mill, or as run of the mill as prepping for having your stomach removed can be. Then things turned south, it was about two days after the surgery…things were anything but run of the mill.  I never regretted my ‘no brainer’ comment so much…I felt like I should have just kept my mouth shut. Complication after complication, the first month we were in the hospital more than we were home.

His sister Melanie, was such an inspiration for him. I’m glad they stayed in such close contact, I however felt helpless, guilty and in the way.  There was nothing I could do to help him, I couldn’t fix him.  I am a wife and mother, I am supposed to fix things I am supposed to make everything better.  That’s my job, that’s what I do.  Reading his blogs was out of the question…I’ve only read maybe three of them.  I start crying every time.
Every time he gets sick I feel guilty, every time he dumps I feel guilty, every time he eats too much I feel like it’s my fault.  He is an adult…an amazing man…strong, gentle, loyal to a fault, and forgiving I hate to see him go through what he goes through.  I have to turn away so I don’t cry…

When you love someone as much as I love Roger, which is only a fraction of what he feels for me, seeing their pain…their struggle, you want to make it better, you want to make it go away.  Knowing that what I feel is only a portion of what he is going through…really doesn’t help.
I try to stand strong, I try to always be there for him.  It doesn’t ever feel like it’s enough.  I listen when he’s frustrated, I let him vent. I wish there was more, so much more I could do for him.
“Eat slower”, “not so much”, “maybe you’ve had enough”….the best and I’m sure the one he’s most sick of hearing “Chew, chew, chew Daddy man, chew, chew, chew.”  These are the things I tell when I don’t know what to say.

The experience did provide me with valuable information:   When someone you love is going to be in the hospital for an extended period have a lap blanket and pillow handy always.  No matter what the procedure or how short it’s going to be always pack snacks and some ‘light’ reading.  Pack chargers and keep your electronics close…you never know when you might be playing a round or fifteen of Alpha Betty.  Family updates are a must.  A one hour procedure will be at least two if not more.  Half hour procedures do not exist.  Cheesecake for breakfast is ok.  For me having a yoga mat wherever I went was huge...the patient waiting room with the ‘relaxation’ or ‘meditation’ station on was a must. 

That’s it.  I know Roger always uses a song lyric in his blogs…the song/phrase I cling to is ”Your life’s not falling apart it’s falling into place” Casting Crowns ‘Just be Held’

Friday, July 14, 2017

Greetings From Texas

Greetings from Austin Texas. I am here on a short business trip and thought I would do a quick update on my most recent test results.

If you remember, the lab test were to try to figure out why I could get so tired to fast. I could be doing fine and then all the sudden be so tired that I could not stay awake. It would happen while at home, in the morning, while driving, or sitting in meetings. It didn’t matter when or where, I would go from being fine to almost snoring in a matter of seconds. That does cause a problem while driving or at work. So I had a battery of test done to try to figure it out. 

All of my test result came back fine. All were low side, which I expected, but all were in the “normal” range. One test I was worried about was the one for diabetes it came back fine. They have decided to continue to test me twice a year for it since my father developed diabetes late in life.

So what about the problem I am have experienced with getting tired at the drop of a hat. Well that is where the poor decisions come into play. Being stomachless has it’s challenges. The first thing that they tell you is that you need to eat 5-6 small meals a day. In theory that may seem like an easy thing to do, but during the hustle and bustle of the day you forget.
My days go fast. I sometimes blink and four hours are gone. I could be running from meeting to meeting, from production, to estimating, to planning or to sales. Or even worse running from plant to plant which is an hour and a half away. Sometimes, many times, I don’t take the time to eat. I figured I would catch up later. Therein lies the problem.

Without a stomach I have no place to store extra food to draw on during the day. If I miss a meal, I just missed it. I can’t eat more later to make up for it or eat more to build my energy up. It is just gone. What the doctors feel is happening is that I am not taking in enough protein during the days leading up to the loss of energy episodes. It is my bodies way of reminding me that it needs more fuel to keep going and I should have eaten more the day before. It is just hard when the hustle and bustle of life steps in. Take this trip for instance. Yesterday was a full day of travel and meetings. I was able to eat twice. During my stomach days I would have been just fine. We will just have to see what the next day or so brings.

As much as a person without a stomach tries, they will no longer be “normal”. Normal folks can eat once, twice or three times a day and be just fine. I have to eat or think about eating constantly in order to function and there are many days I do not do that.
I just want to be normal again and I won’t be. I even pushed my doctor on that and asked what I could do to be more normal and her response was that I am not normal and will never again be normal.  “Normal people do not have their stomach removed” was her response.

So I have to accept that I will always be the exception to the “normal” rule. In other words, as my friends have been saying for year, “there is something off with Roger, we just can’t put our finger on it yet.”
Hey I think I found it.

Have a great weekend.
If you all want me to settle down,
Slow up and stop all my running 'round,
Do everything like you want me to,
There's one thing that I will say to you,
I'm not like everybody else,
I'm not like everybody else
(I’m not like everybody else   The Kinks)

Sunday, June 25, 2017

Fear And Then Hope....

Since I am fast approaching two years without a stomach, I thought I would reflect on topic I hate. FEAR.

My greatest fear is that one of my children inherits this shitty gene. Even worse would be that my oldest daughter has the mutation and it was passed on to my grandson. I am barley out of the starting blocks and this genetic mutation could have moved on two generations. That is my definitation of fear, and I lay awake at nights thinking about it.

That said, there is HOPE.

Now I am not going to take any credit for what you are about to read. That comes from an amazing young lady going through the same thing my sister Mel and I are. Her name is Heather. She had her stomach removed last year due to the same genetic mutation. In her family's case the mutation turned into cancer that claimed her mother's life. Now Heather and her husband worry about the same thing as I do. They have a young daughter and struggle with the same question, WHAT IF?

Here is one of Heather's blog dated June 17th....


This man right here is the man, the myth, the legend....he is nothing short of amazing and someone I really look up to.

Meet Dr. Parry Guilford.  He is the Director and Principal Investigator of the Centre for Translational Cancer Research in New Zealand.  HE is the man who discovered the CDH1 mutation and continues to research it.

I have been in contact with him through email and he is kind, caring, and quick to reply back with any questions I have had.

He just received a 5 year Grant from the New Zealand Health Research Council to continue strong research on the CDH1 mutation and HDGC.  He is EXTREMELY confident that by the time Paige is able to decide if she wants to test for the mutation (she has a 50% chance of the mutation), that she will NOT have to have a total gastrectomy.  He has spoken, before, about Chemoprevention Approaches...specifically one where 1 week every 5 years, these kiddos (grown at this point) would take a low toxicity chemoprevention medication to avoid HDGC.  They are "making great progress identifying weaknesses in the cells with CDH1 mutations and there are a few drugs which are looking promising (at least in cell culture experiments)."  It's unlikely that they will have something set in stone within the next 5-10ish years, but "hopefully we will have started trials by then."  "It will take quite a long time before we are confident that the chemoprevention drugs are working."

Hearing all of this great news from Dr. Parry Guilford makes me SO whole day, week, month, and year were MADE hearing that Paige and any of her cousins IF their parents test positive will NOT have to have a TG and there will be other options!! :) :) :)

Like I said, Dr. Parry Guilford is nothing short of amazing and I appreciate ALL he has done for myself, my family, and other CDH1 families.  I don't think he realizes how great he truly is, but I have tried to let him know exactly how I feel!!! <3

I can't echo these feelings enough. As a parent, as a grandparent I can only hope that there are people out there like Dr. Guilford who care enough about this crappy gene I have to continue to fight for us, for our families.

It is people like Dr. Guilford who give me hope.

As for the amazing Ms. Heather. I have not yet had the pleasure of meeting her. We only know each other through our blogs, Facebook, emails and text. Once things slow down for both families we will get the chance to meet.

Thank you Heather.

If you would like to read more about Heather's story visit the No stomach for cancer website and go to the blogs link. You will find her there.

Saturday, May 20, 2017

Almost Asleep At The Wheel..

A number of years ago a friend introduced me to a poem simply called "Don't Quit"

This image is the first verse of the poem that has stuck with me throughout the years and I have leaned on it many times during the trials of my CDH-1 journey.

So why bring it up now? Well this week I have found myself needing it once again.

Early last week I was driving to work when all of the sudden I started to crash. I went from being wide awake singing with the radio to not being able to keep my eyes open in a matter of seconds.

A couple of days later I was in a meeting when it happened again. Earlier this week on the way home it happened again and then once again on Wednesday as I worked at the store. I go from being full of energy doing something to no energy and fighting to stay awake.

So yesterday I saw my doctor so that we could talk about it. And soon the topic of conversation switched to testing me for diabetes. Not what I wanted to hear. It does make some sense due to the fact that my father developed diabetes late in his life. But still a kick in the gut.

All I could do was stare at my doctor and shake my head. In the back of my mind I was just saying to myself I am done. I want off this road trip. She then reminded me of something I have always known. There is no destination in this journey I am on. There is no end to this where I will be once again normal".  As she simply put it, "normal people do not have to have their stomachs removed".
My body is going to adjust and react differently as I get older just so it can compensate for my missing organ.

So I donated five to six more vials of blood and am waiting for the results. Besides the normal blood work, they will be checking my B12 levels and for diabetes. If my B12 levels are low I will have to begin giving myself injections every two weeks. And if I have diabetes, well let's just say that will bring a whole nother level of fun to this crazy mixed up life I live.

In the event that these test do not show anything out of the ordinary, I was given a referral to have a nutritional study done at the University of Minnesota. My doctor believes that the issue is most likely that something is missing from my diet and this is my body's way telling me. The study should be able to help identify it. This study request was sent to my insurance company to see if the cost of the study will be covered.

So I sit and wait. Are we having fun yet?

Instead of a song I am going to place the Don't Quit Poem here. There is no author attributed to it so I do not know who wrote it. It has helped me in the past and did again this week. I would also like to thank a good friend of mine for introducing me to it many years ago. Thanks Tim.

Don't Quit

When things go wrong, as they sometimes will, when the road you're trudging seems all uphill, when the funds are low and the debts are high, and you want to smile, but you have to sigh. When care is pressing you down a bit. Rest if you must, but don't you quit.

Life is queer with its twists and turns, as every one of us sometimes learns, and many a fellow turns about when he might have won had he stuck it out. Don't give up though the pace seems slow, you may succeed with another blow.

Often the goal is nearer than it seems to a faint and faltering man. often the struggler has given up when he might have captured the victor's cup, and he learned too late when the night came down, how close he was to the golden crown.

Success is failure turned inside out the silver tint in the clouds of doubt, and you never can tell how close you are, it might be near when it seems afar. So stick to the fight when you're hardest hit
It's when things seem worst that you must not quit.

Thursday, May 4, 2017

Wait There Is Smoke!

Dateline May 3rd 2017

My appointment was at the University of Minnesota and I was there to get zapped by a laser.

The procedure was being conducted as a training class on a new piece of equipment which meant, as long as agreed to be their lab rat, the visit was free.  So I said...  Sure, what the heck.

Now I have mentioned before how much I dislike my scar. It didn't feel or look right and I wanted it fixed. So for the past few months I have been going to the U Of M to have steroid injections directly into the scar. The reason for this was to get the scar to flatten out. For the most part this worked. The injections weren't pleasant, but they did the job.

So this brings us to yesterday's laser treatment. They were supposed to be done to change the color of the scar. However when I arrived at the appointment things changed.

First thing I was told was that the laser treatment they were training on would not change the color, but instead would force the scar to reform properly this time. So I asked what was the difference between this and the steroid injections I just went through. His explanation was this time we are going to use the laser to due "controlled trauma" and then "vaporize" the scar. It sounded painful and I prepared for the worst. The good news was that there were going to use a numbing agent on the scar to help reduce the pain of being shot with the laser.
Now the numbing agent was just a numbing cream. The nurse was trying her best to follow the rules. She had a long swab and had it slathered with numbing agent. She was trying her best to smear in evenly across my scar. However a huge glop of the numbing agent dropped onto my hand. She then quit worrying about procedure and used her finger to smear the cream.
As for the glob on my hand? Well I decided to do what any guy would do and I wiped it on my pants. That was all well in good until a few seconds later when I rubbed my eye. Yep numbing agent in my eye. Don't try this at home folks I am a professional.

The procedure was to be done in the next room. My wife had to wait for me in the first room while the procedure was being done.
Once in the room, they made the decision to "train" on a second laser to help with the color of the scar. To do this one of the nurses had to go back into the room that my wife was in and get the second laser machine. When the nurse went into the room, grabbed the laser machine, she looked at my wife, smiled, and said "we are going to make him cry".  Really who says that?

So what was worst part of the session? Easy, that was watching them prep the machines. To make sure that lasers were aligned and working properly they tested them on tongue depressors. The first one they did was the one to change the color of the scar. I saw a flash of light and that was it. The second one was the one that needed to do the "controlled trauma" and then "vaporize" the scar. This one, when they hit the tongue depressor, produced a huge ball of smoke. All I could say was "Oh my god that is a lot of smoke". DR. Jue just smiled and responded, "yea, this one could hurt just a bit".  

The procedures went fine and I survived. The first laser they used was the one to try to change the color of the scar felt like a rubber band snap.  The second laser which was the one schedule to do all the damage, thanks to the numbing agent, only felt like small pin pricks. 
In fact the procedure went so well that they have agreed to do another 2-3 of these "training' sessions on me over the next couple of months for free.

We had so much fun, why not do it again!

What can this strange device be?
When I touch it, it gives forth a sound
It's got wires that vibrate and give music
What can this thing be that I found?
(2112    Rush)

Saturday, April 22, 2017

An Anniverary Of Sorts.

So I was looking through some of my old post when I came across a blog I wrote just over a year ago..... And I missed an anniversary of sorts.

In this particular blog I mentioned how I had received the all clear on the tumor that they found in my esophagus. And with that came the news that I was all done with my trips down to the Mayo Clinic. I had ended one big part of this journey. A little over a year ago the hospitalization portion of this adventure stopped and it is kind of a big deal.

You see since then: 
I have not had to be admitted back into the hospital even once. 
I have not had to worry about how I was going to get to and from Rochester or who was going to drive me.
I have not had to worry about strictures.
I have not had to have dilations, or talk about getting another “damn stent”. 
I have not had a I.V. stuck in my arm.
I have not been put to sleep.

Now that is not to say that this year was filled with sunbeams and unicorns. Plenty of things have happened to take the place of hospital stays, as they say "life goes on". I also don't go a day without being reminded that I do not have a stomach. I have to think about it every time I eat, because if I don't then something gets stuck. Yes, even after all this time without a stomach, I still get food stuck on more occasions than I care to admit. When food gets stuck, then the area where the food is stuck swells and nothing goes down. Not even water. So once this happens there is nothing I can do about it except wait it out.
It is just my new normal but it is a new normal without a hospital stay.

On a side note, I have finished getting the steroid injections for my scar. All in all I had four sets of steroid injections. They were painful but they seem to have done the trick. My scar is not as pronounced as it once was.

The next step in this process happens on May 3rd when I go back to the U of M for a “training” session . They are going to be training on a new laser procedure which they hope will help reduce the redness of the scar tissue. Since it is a training session, there will be 25-30 people in the room when they do the procedure and I will be their test rat. Test Rat, another bucket list item checked off.

Funny story though. When the Dr. was “selling” me on this idea, he mentioned that it was totally safe and I didn’t need to worry about it. The most common side effect was an upset stomach. I just stared at him.
He went on to tell me that they could give me some medication before the procedure to lessen the impact to my stomach if I was concerned about it. Again I didn’t say anything I just looked at him and smiled. Really? 
It must have been five minutes later when he stopped mid-sentence and started to laugh. “telling a guy without a stomach that I could give him something to calm his stomach…. It’s gonna be a long day.” 
And I agreed to let this guy shoot me with a laser!  At least the procedure is free.

Hear the echoes and feel yourself starting to turn
Don't know why you should feel
That there's something to learn
It's just a game that you play
(Time Passages.  Al Stewart)

Friday, April 14, 2017

Week One Is In The Books

So I have successfully completed my first week at my new job. This week has been filled with onboarding meetings. They were stacked one after another. There was three onboarding lunches that I had to worry my way through, but with the exception of Tuesday all of them went just fine.

Did I tell them about my stomach, or lack there of? Yes, I did on the first day. There was talk about taking me to a popular pizza buffet, so I decided it was probably in my best interest to tell them. At first they had the normal questions I get asked like, "You can live without a stomach"? "Where does the food go"? But then the topics just switched and we were done the questions. In the end there is a lot of work to be done and they are glad that I am there, no stomach and all.

The hardest part of this week has been trying to keep my weight up. I have lost six pounds over the last eight days. I kind of figured I would loose some weight, but the six pounds is a little much. I am currently sitting around 183 pounds. I really don't want to get much lower. However with the meeting running back to back it left little time for me to keep up with my eating.

Next week should be better. There is still onboarding and a trip but things should slow down and I should be able to get into a rhythm of eating during the day.

But for this weekend I will relax.
What is on the docket for this weekend?
Well it is Easter.
What would you think of a gutless Easter Bunny.
I will post pictures. Have a great weekend.

She's somebody's hero
A hero to her baby with a skinned up knee
A little kiss is all she needs
The keeper of the cheerios
The voice that brings snow white to life
Bedtime stories every night
That smile lets her know
She somebody's hero
(Somebody's Hero  Jamie O'Neil)

For my Brother-In-Law Jim
Sending Our Love...