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The Road Before & After Surgery
October 10, 2017
A Much More Friendlier Kind Of Scare!
Mood:  chillin'
Now Playing: Day 2836-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Now...this is a much more friendlier kind of scare that we need in our lives!

A little more Halloween fun here in the country...

S-C-A-R-Y!

No pun intended! HA!

Thank goodness for our country scarecrows helping to keep a smile on our face~

I have yet to get any relief. We also have yet to hear back from two of my other specialists. Although we anticipate to hear something from them by the end of the business day tomorrow. Their surgical day, which means we can expect both calls much later in the afternoon. I am already scheduled with one of my specialists who is also a surgeon. They quickly worked me into their schedule Monday morning. Initially, they wanted to see me first thing Monday morning. But driving in the car is hard enough right now with the pain. Making a drive across state lines for an hour or so was just impossible to do Monday morning. So we are hoping that by waiting until Friday. My body can at least bring it down a bit when it comes to the pain. So far...I have yet to catch a break.

What I am happy about is finding something that I can tolerate that doesn't make matters worse for me. Instead of fudge pops that didn't work the first or second try, even with two totally different brands. Eric found some fudge pops at the store today that are actually ice pops that taste like fudge pops. With a 6-pound weight loss in less than a week due to the inability to hardly consume anything without it causing unbearable pain or vomiting. It was the first silver lining we have found when it comes to something for me to consume. Just like with gastroparesis...right now everything is trial & error.

What we have been bracing ourselves for is the new 'norm.' This might be our new norm, although we sure don't hope so, but radiology imaging and reports don't lie. We are still going through the initial shock with everything. As well we anticipate more news that might not turn out to be very promising through out the remainder of this week. With the 'United GP Walk' going on through out this entire month. It looks like we might be walking much later this month. Not during our usual second weekend of October. Even with some really AMAZING news that came via mail today. It was hard to be excited. It's honestly hard to really focus on much of anything right now. Our minds are already fully occupied on decisions that will be made by my team of specialists. It's extremely important to know if this may be the end of a very long journey. 

Fear is still running rampid in my mind. But there are moments through out the day, when we both still find a reason to laugh. A reason to smile. Another successful raindance chalked up for Eric! How does he ever predict these things? The precision is just mind-blowing! Heeheeheehee! Some silly folks...they still believe in his raindancing. Who really has Sioux Indian in their blood after all...me or him? Hmmmmm....

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 11, 2017 3:03 AM EDT
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October 9, 2017
Finding My Way...Through The Dark.
Mood:  not sure
Now Playing: Day 2835-Next GP Chapter... Turning Lemons Into Lemonade :)

 

This is what makes me smile.

A few visitors, or two, or three, or four, or even five greeting us this morning. Thankfully they all showed up for breakfast before the phone calls began...again.

The only reason I say...again...is because myself and Eric personally feel as if we literally came full circle. How I felt before oncology treatments. Before the big medical mystery was solved 15 months ago.

Now...not only have I come full circle. But so has the race to save my life. Yep, we began that race, once again, early this morning. The first specialist here in Indiana whom was contacted by the hospital to review recent radiology reports and other labs. Their decision this morning was rather disappointing. I now overwhelmingly feel the death sentence standing before me. I am not so sure that there is really any clear answer or exit strategy this time around for me. Another specialist whom felt things were far too advanced to handle such an extremely complex case. Sure, it was very disappointing. But I have to admit...we weren't too terribly surprised. It's still very disheartening to be faced with the inevitable after such a long, brave battle.

This mornings first specialist declining to take on my medical case led to once again, a very overwhelmed team of specialists back in Ohio. My first of many appointments was quickly scheduled for this week. With two other specialists still scrambling to retain all of the hospital records, reports and other pertinent information. Nothing like coming face-to-face with fear. A real fear that this might be the beginning to the end with my health. My life. I have learned with amazing counseling and life coaching over the years that coming to grips with reality is very important. Realizing your deepest, darkest fears is also a must. Being able to speak your mind through your emotions is a god given right. So is having the ability to not be ashamed to admit that sometimes...you will be defeated by something far bigger than what can be handled here on earth.

I know that my guardian angels in heaven are very close to me now. As a beautiful angel wind chime that hangs down from the cloud room, bedroom ceiling fan made the most beautiful chiming sound this evening. No one was around, but I felt the presence of who I believe is still here with me. Watching over me from heaven. I still have yet to shake this new feeling of being very sick. We also have yet to find some sort of narcotic to help control the pain. So I bravely do so without pain medication assistance. I am fortunate that my pain tolerance is anything but normal. But pain like I experienced today, sure doesn't make it any easier. Especially when all I want to do...is try to relax, take it easy and sleep.

Tomorrow is a new day. Two other specialists will hopefully be able to give more insight on what can be done. If anything at this stage. I dare not dance with the word...hope. Expecting the worst, but possibly being surprised with something a bit more positive. We will take anything right now. Even a mercy surgery. I refuse to suffer in this kind of manner. So something has to give.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 11, 2017 2:03 AM EDT
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October 8, 2017
Now...What?...
Mood:  not sure
Now Playing: Day 2834-Next GP Chapter... Turning Lemons Into Lemonade :)

 

The waiting game begins.

So much...for hospital physicians estimated guess on what the heck is going on with me. So much...for cat scan imaging coming back with absolutely zero, zip, zilch. Not once. But twice. So much...for this too shall pass...because it hasn't yet over the past 10 days.

The final radiology reports came back this morning. This after needing to be carefully read and reviewed by two other radiologists due to two separate cat scans failing to show a slue of problems. One big nightmare of a mess.

It's crazy to just sit here and think about how fast things have quickly progressed with my health. Literally in just a mere 5 months since my last rescan. At least back then things weren't not even a touch...this bad. In fact, the largest ovarian tumor is now more than doubled it's size. The lower portion of my small intestine as well has it's own serious connected problems going on that were not present just a mere 5 months ago. That is just 'some' of what was finally discovered using different imaging machinery at the hospital.

The toughest pill to swallow is the inability to take morphine due to causing even further GI issues. It worked really well in the hospital via IV. But then once I got home, three days later...my entire GI tract locked up on me. Now it's back to 24-hour pain and overwhelming discomfort until my team of specialists can figure out who needs to address which part of the damning radiology reports. The far bigger pill we might have to swallow...IF there is anything left that can be done. Instead of things just staying within the ovary after a failed attempt at a very high, maximum dose of radiation therapy. Everything has now quickly spread like wildfire, out of nowhere. I still am lost for words, yet thankful to have some sort of voice here on this blog. The only place where I will talk about the huge elephant in the room with regards to my health. Elephants'...plural now.

It's all really a HUGE, GINOROUS, damning of a shame.

If you are wondering what the heck is going on with this blog. I am still in the middle of transitioning this blog over to a new website. Becoming this sick, out of nowhere, sure didn't help out matters. It's hard to find more than an hour to refocus myself from the pain and place my attention towards the new website. A new home for this blog that won't continue crashing due to the inability to handle high volume server requests. The current webserver is still overcoming some serious issues. As once again...the blog has crashed while I am waiting for engineer assistance. Thanks to everyone for being patient as soon enough, this blog will have it's new home. YAYYYY! Something positive during a really dark time for myself and Eric.

It's been tough over the past two weeks. We have no clue what to expect, whether alone what to anticipate come tomorrow morning. It's like a really bad version of, "Anything Goes," by Florida Georgia Line.

Now what?... Who knows.

 

 


Posted by GastroparesisAwarenessCampaignOrg. at 11:03 PM EDT
Updated: October 8, 2017 11:07 PM EDT
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October 7, 2017
Never Give Up...Never Give In.
Mood:  hug me
Now Playing: Day 2833-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Not one...but 2 cat scans over the course of a mere month.

Both failed to pick up not just the existing tumors. But more than what we could had ever anticipated. This is what happens when oncology treatments don't work. This is what happens when you begin staring down death.

Yesterday morning...7:30am. The phone calls began. I already knew deep down in my heart that the news wasn't going to be good. Myself and Eric already knew due to symptoms that are continuing to only get worse. The pain was off the charts yesterday morning into the early evening hours. I hardly got any sleep. That makes two of us. There was no need for me to pick up the phone. It can wait until we head up to the hospital later that morning. Facing the music of what lies ahead.

Isn't is crazy, how life can change in an instant. 

It has been almost 5 months since my last rescan. After myself and my specialists had come to a decision to discontinue rescanning what had already shown signs of growing back. Unfortunately, over the past month, new symptoms had to urgently be addressed. Yet, the inability to manage new symptoms had my specialists scrambling to once again, rescan. Two cat scans using the same imaging equipment failed to show serious issues that had escalated over the past 5 months.

The results that were finally picked up by radiology using other imaging equipment..painfully damning as one-by-one...placed on the big screen.

Yesterday morning marks the beginning of a chapter that we both had dreaded for a very long time. We not only have a very long week ahead of us...next week. But there are decisions that now must be made. With not much time to make them. As we both bravely kept our composure at the hospital while being handed what I feel is a death sentence. We came home feeling defeated and most definitely, beyond devastated.

I can only hope that by sharing my journey over the years. That those whom also bravely put a smile on each and every day, always remember, that God only gives his strongest battles to his bravest angels.

Never give up. Never give in.

 


Posted by GastroparesisAwarenessCampaignOrg. at 1:16 AM EDT
Updated: October 8, 2017 10:19 PM EDT
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October 6, 2017
Sometimes...
Mood:  bright
Now Playing: Day 2832-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Sometimes...all you can do...is shake your head.

Yesterday evening, after a long day at the hospital. We sat down to discuss what might be ahead of us this morning. When final reports come back from radiology. What ends up in the hands of my specialists. Not only were we both mentally spent after a very long day. But as well, I was still dealing with the knife sheering pain, nausea and vomiting.

10:30pm. Just when we are finally able to sit down and relax. After the first round of some very strong pain medication. A text message runs across the screen of my cell phone.

It is very sad that we had to deal with a parent sending us a threatening text message yesterday evening. When all we wanted to do was finally be able to relax before needing to be back at the hospital this morning. All we both could do...was shake our heads. After knowing issues with my health that started as a young child that have progressed as now...an adult. It is very sad that of all people. A parent fails to understand that stress does only one thing when you are sick. It only makes matters worse. Not better.

What is even more disheartening...is when Eric had to finally get to the point of calling the local police department in hopes of having assistance to stop the threats via text message that went into another war of words on the phone. It's one thing to send a threatening text message. Yet, it's another thing to do so again on the phone. When the person starting it happens to be a parent. Eric was already emotionally charged with what we had yet to learn from radiology reports. All I can say...is how extremely disappointed that we both are that any parent would further subject their adult child to more stress. We have enough to deal with right now. We didn't need any further stress.

Physically...my body can't handle anymore of the same ole song & dance with dysfunctional family issues. The door must remain closed. As we ask for those whom have been contacting us to no longer do so with regards to family. For those who have continued to ask. No. We will not be attending any family wedding over this weekend.

We vow to continue focusing our full attention to serious matters at hand. We also vow to remain diligent to live the rest of our lives as peacefully as possible. Moving forward...happily ever after.

There is not one single thing nor one single person in this world worth taking away your happiness. Never allow anyone to steal your smile. Life is far too short for any pettiness.

 

 

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 7, 2017 12:33 AM EDT
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October 5, 2017
A Little Message...Behind The Dime :)
Mood:  d'oh
Now Playing: Day 2831-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Toss, turn, toss, turn.

I dreaded this day. Eric dreaded this day. What I dreaded most...was once again falling naïve to something that I should had known better.

Another scan...two in less than 30 days that showed absolutely nothing. WHAT?!? Could it really be some sort of miraculous miracle? Prayers answered? Or is this just some sort of fluke with the same piece of high-tech machinery? Two separate cat scans. Both failed to show the internal war within. Yet...blood work reports from in and out of state showing otherwise. Metastasized tumors. Things spreading to the point of symptoms that have not only continued. But have gotten far worse in a matter of a week.

Clearly...not only were my specialists dumbfounded. But so were the radiologists who could not locate the tumors with the same imaging equipment, cat scan. Even the largest ovarian tumor that evaded all possible oncology treatments. Unfortunately, I once again fell victim of being totally naïve. Believing that somehow, I was miraculously cured. Possibly even by the power of prayer. Sure, I do believe in those kinds of miracles. I believe there is a God. I also believe in angels.

This morning was the start of a very long morning. An even longer afternoon. Followed by a very shattering evening. All of my hopes...quickly crashing down. How dumb was I? To be so naïve. We are scheduled back to the hospital tomorrow. To face the music of a very long journey. Quickly spiraling out of control as the tumors were ironically found by the hospital radiologists today. A long process of finding the right imaging equipment that could see through organs all fused together. Hiding the internal war within. So far, we were only told that things looked far worse. On top of the largest tumor literally twisting the lower portion of my intestines while pushing upwards on other surrounding organs. Another infection that quickly spread which meant more IV treatments and pain medication so I can be a bit more comfortable.

Who I am most disappointed in...myself. How naïve to believe that somehow I was cured by some miraculous intervention. Yes, I always tend to be extremely hard on myself. Chalk it up to the fighter within. I have given it everything that I have got over the past 15 months. Maybe I was even a bit naïve to believe that somehow things wouldn't get worse until much further down the road. Not as predicted by my team of oncologists, 12-24 months. Disappointed...isn't the word. Defeated...feels much more appropriate. As my specialists...once again...quickly scramble to get the infection under control. Along with some sort of pain medication that doesn't make matters worse with my obsolete GI motility.

I am left with one question...when does this all end?.

Even us strong gals have our breaking point. Yes, it's perfectly okay not only to express yourself, your feelings, your opinions. Contrary to what family always told me...that it isn't okay to express yourself by any means. It's also perfectly normal. But most importantly, it's very healthy and beneficial to cry your eyes out. As I did once we got back home from the hospital. There is so much that I still want to accomplish with my life. Two online businesses I have yet to finish. After just receiving the approval for a temporary work permit. Sometimes...it feels as if everything comes crashing down at once. But I know in the end...I can chose, once again, to fight with everything I have left inside me. Or...I can choose to give up a very brave battle. The choice is solely mine for the taking. We all know that I don't give up that easily. But I fully anticipate that the road ahead most definitely won't be an easy one.

A little message behind the dime that I found while waiting to be taken back...

A sign to keep fighting from papa J


Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EDT
Updated: October 6, 2017 11:38 PM EDT
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October 4, 2017
ALWAYS Know Your Worth! :)
Mood:  a-ok
Now Playing: Day 2830-Next GP Chapter... Turning Lemons Into Lemonade :)

 

What we have learned over the past several years...is that family is made up of those by your own choosing. Family does not always have to be blood related. Family can be made up of friends, loved ones, and even what started out as kindness from a stranger.

Family is made up by those who lift you up, when you are down. Who put a smile upon your face. Instead of a frown. Those who love you...no matter what...unconditionally.

As once again, another once-in-a-lifetime event. We find ourselves uninvited, being excluded as family members. Another nieces wedding. We have finally also come to realize that some chapters in life...need to remain closed.

Family is family of your own choosing. It doesn't always have to be connected by blood.

Respect yourself and love yourself enough...to never accept being treated as anyone or anything less.

 

EHW


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
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October 3, 2017
Everything Is Always....SCARIER...In The Country! ;)
Mood:  cheeky
Now Playing: Day 2829-Next GP Chapter... Turning Lemons Into Lemonade :)

 

With having a few days before needing to be back at the hospital. It's time for some serious R&R...

Time to take it easy and enjoy a little bit of fall fun too! Well...why not?

It is OCTOBERBOO!!

Everything and I mean...EVERYTHING is always bigger in the country! Ask Eric, he will tell you that everything also tastes a million times better in the country when it comes to food! It might be due to 'less is more,' when it comes to a large city population vs. a far less populated area in the country. Less crowds, less supply and demand means fresh food! It might also mean weight gain...but it's fall folks! Nothing wrong with making sure you have a little extra warmth for the upcoming winter months! We are quite the opposite though when it comes to our weight. We struggle with keeping the pounds on through out the entire year. Eric...mainly due to a very high metabolism. Myself...the need to stay on liquids. What my body can handle and has proven over the years to do best with when it comes to gastroparesis. If I didn't have to worry about what I can eat...this would be the most ideal little, lazy, river town to eat to my hearts content! Restaurants, fast food, festivals and far too much access to all sorts of tasty goods~OH MY!

What we also continue to realize when it comes to living in the country...EEEEEEYIKESSSSS!!

Yep, even some things are far better NOT bigger in the country! Hahahahaha! 

With Halloween quickly on it's way! The scares are hands-down BIGGER here in the country! Compared to back in Ohio, living within a big city. I may not be much for scary stuff, but who can't resist building a little country scare or two?.

BOO!


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 4, 2017 3:00 AM EDT
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October 2, 2017
R-o-l-l-i-n-g With The Punches...
Mood:  a-ok
Now Playing: Day 2828-Next GP Chapter... Turning Lemons Into Lemonade :)

 

What I have learned the most out of life?

Expect the unexpected.

Sometimes...even the best executed plans...don't always go as planned.

As we anticipated my second surgical round this morning. Something else decided to also rear it's ugly head on the big screen. We were told to expect things to once again come full circle after one failed attempt after another with oncology treatments. Even the maximum dose of radiation therapy failed to work in my favor. That was a little over 15 months ago. My oncologist told us to expect things to get worse over time...a period between 12-24 months.

Over the past 15 months. What I have learned to be most thankful for are the good days! Days when I have a chance to escape my reality. Time to be free from any and all restraints in front of me...medically.

I have learned a lot over the past 15 months. Maybe sometimes...a bit too much. What I have also learned is that those who will hurt you the most...are usually and unfortunately...family. What we have learned is the undeniable kindness when it comes to strangers. Even friends who never falter. Regardless of how much things can sometimes feel beyond monotonous. What we have also learned over the past 15 months is the power that comes with letting go...even with family. What does not serve you well. Will always be replaced with people who will love you unconditionally. Family is made up of those by your choosing, it doesn't need to always be bound by blood. Family...is family.

I have learned more than the cyber world can allow to write as far as this blog. I have lived, learned, grown and matured by the struggles we have endured. I have learned to even embrace what can never be defied. If I had a choice. I would much rather choose breast cancer over ovarian cancer any day of the week. Needless to say...I wouldn't expect anyone to understand. Unless you took a walk in my shoes. Our shoes. It hasn't been any easier on Eric through out this rollercoaster ride of a journey.

Somehow...someway...we still continue to weather the storm. Doing so...together.

If things couldn't had gone more the complete opposite of what was planned during this second round at the hospital. Imagine my face when we were told that I would have to undergo round 3 later this week. Ummmm...this week?!? Here's the problem with carefully planned events that involve major life changes. Like...an already scheduled date for a major television show taping. Ummmm...like having to be on the plane by later this week.

This is where always remaining pessimistic most definitely comes into play! It's one thing to anticipate ongoing issues with my health. But to have it happen during all times...this week. Was most definitely not expected. It's a good thing we were handed the news while I was still tanked from the good stuff filtering through my veins. Bah!

 Thank goodness for a production manager that already understands the uniqueness when it comes to my health. Thank goodness for having another chance at a later date to start this new chapter in my life! Another show taping and airlines booked for two at a later date. Thank...YOU!!!

For now...I have hit another huge hurdle that I must jump when it comes to existing issues with my health. This means time to do everything that I possibly can to get back on my feet. It's a good thing that I can honestly say...been THERE! done THAT!

Time and time and time and time, again.

 Lucky, is being the strong gal that I am enough to understand that things like today do happen. God willing, we got a second chance to open the door to an amazing, once-in-a-lifetime opportunity. We just have to wait a little bit and work a lot harder than most. But things happen. Life happens when least expected.

  As long as you keep rolling with the punches...everything will be a-l-r-i-g-h-t~


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 4, 2017 2:22 AM EDT
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October 1, 2017
THE OFFICIAL KICK-OFF BEGINS!! :)
Mood:  celebratory
Now Playing: Day 2827-Next GP Chapter... Turning Lemons Into Lemonade :)

 

YAYYYYY!

THE OFFICIAL KICK-OFF BEGINS!!

What a magnificently most B-E-A-U-T-I-F-U-L day to begin this years huge Gastroparesis Awareness event! Beautiful partly cloudy skies, perfect fall temperatures and even a gentle breeze in the air...PERFECT! PERFECTO! It doesn't get any better than this folks when it comes to the start of our month-long Gastroparesis Awareness event!

The final shirt orders have been filled and successfully on their way to those who will be walking, running and riding for Gastroparesis Awareness. Talking about PERFECT timing! YAYYYY! From a small idea that began over 8 years ago. To now a HUGE annual event!

Thanks to YOU! Thanks to EVERYONE who will be participating during this years United GP Walk-2017!

YOU! Yes...YOU have made this another successful year raising Gastroparesis Awareness one person at a time!

It's official! As of today, October 1st, the OFFICIAL KICK-OFF for international Gastroparesis Awareness begins!!

Please don't forget your cameras during your Gastroparesis Awareness event and send all shared photos to:

Gastroparesis Awareness Campaign Org.

gpawarenessfund@yahoo.com

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 2, 2017 1:39 AM EDT
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