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...

Friday, March 31, 2017

A New Beginning.....

So I have a question for you. 
When taking off a band aid, which do you prefer?

  1. To slowly peel the band aid back, all the while trying not to pull out every hair that is stuck with it. The goal here is to remove the band aid. Leave the hair intact . All while causing the least amount of pain as possible.       OR...
  2. You just rip it off and get it over with? Leave bare patch of skin where the hair used to reside. You might scream and holler like a two year old at first, but a couple seconds into it you are just fine.
Why would I ask this?

My days of unemployment are coming to an end. I have accepted an offer to return to work with a company out of Inver Grove Heights Minnesota. I will be starting work on April 10th right after we return from a quick trip out to North Carolina to see Jenny, Sam and our Grandson Remi.

Now I have been out of work since January 1st and this new position is an amazing opportunity, with an amazing company, that should reward and challenge me for years to come. 
However with the start of this new chapter in my life brings up the question of what to tell and when. To be specific how or when do I tell them that I am missing my stomach. I know that I do not have to tell them anything, but lets be honest, it is going to come out one way or another. Heck there is a real possibility that that I will not even make it out of day number one without it coming up. Since this is the first time I have started a new job since I had the surgery, what do I do? Do I just let it come up and work through it, or do I just rip off the band aid off, tell them and get it over with.  

Secretly I am dreading that first day, where the team says “let’s take the newbie to lunch.”
What if they decide to do that and take me to a buffet? Remember I am a horrible date at a buffet.
What if they decide to take me to a place like Subway or Davanni’s where my lunch options are really limited? I love both of these places, but have not eaten there since I had my stomach removed.

Believe it or not the best place for me to go to lunch at is a bar and I am not sure how that will look on day one. Bar appetizers are almost the perfect size, I can eat one third to one half depending on what it is. The rest can be boxed up and I will have lunch for the next couple of days. But going to a bar for lunch on your first day, may send the wrong signal to my new co-workers.

Still if I don’t tell them, and we go to lunch, the group will be staring at me wondering why the heck I am not eating. Do I not like the place that they chose? Do I not like the food? Do I not like to eat? Why is he so skinny? Is he sick? Should we have hired him in the first place? Now none of these question may come up on the first day, but they might. And if they do I am going to have to tell them. So what do I do. The first few days is when teams and executives want to meet the newbie and see what they are all about. It is my opportunity to give them a good first impression of who I am, and I really don't want the fact that I do not have a stomach to dampen the day. The fact that I do not have a stomach has nothing to do with who I am professionally, but it is still there. It is always there as shadow over everything I do. 

What to tell and when. This should be interesting to say the least.  I will let you know how it goes.. 
Maybe they will wait until day two and then it is no big deal!

And though it's always been with me
I must tear down the wall let it be
All I am, and all that I was ever meant to be, in harmony
Shining true and smiling back at all who wait to cross
There is no loss

(The Wall    Kansas)

Monday, March 6, 2017

In The End Was It Worth It?

Last week ended on a tough note and it brought back a question I have asked myself many times since that day I was told I had the CDH1 mutation.
Did I accomplish anything by having my stomach removed?

You see I spent Friday and Saturday saying good-bye to someone I have know for a number of years. We were not super close, however I got to know him as we played softball together on the church softball team.
He was the young speedy quick player on the team that could stretch a single into a double or a double into an in the park home run. I on the other hand was the not so speedy quick player on the team who could stretch a singe into a single and easily stretch a double into a single as well.

They say you have two times and dates stamped into your life. The day you are born and the day that you die. Everything else is up to you and the decisions you make. If you believe that then it really brings into question whether or not having my stomach removed changed anything. I still have that end date stamped into my "being". There is still an expiration date on my time here and I am not sure that by having my stomach removed changed that date at all.

He was 33 and in great shape. A son, a husband, a father and his life ended in a tragic car accident. He got up went to work and never came home. His time on this earth had ended. I have to believe that if he knew what was going to happen on that day that he would have done something. Changed his route. Changed the time that he left for work or even called in sick. If he had would that have change that days outcome? Would his end date moved?

That's what I did. I changed the path that I might have been on. I got the warning shot that my friend did not. Did I accomplish anything by having my stomach removed?
Did I move my end date? I don't know.
I know that I will not die of stomach cancer.
Still did I change that date?
We will just have to sit back and see how this life plays out.

Two, three count with nobody on
He hit a high fly into the stand
Rounding third he was headed for home
(Brown Eyed Handsome Man   Chuck Berry)

Rest in peace Matt.