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The Road Before & After Surgery
October 31, 2017
HAPPY SPOOKTACULAR HALLOWEEN!! ;)
Mood:  cheeky
Now Playing: Day 2856-Next GP Chapter... Turning Lemons Into Lemonade :)

 

HAPPY SPOOKTACULAR HALLOWEEN!

BOO!!

Talking about a perfect night for some tricks and treats!

A most beautiful fall day for some fun in the country!

YEE~HAW

It might not had been the most ideal start of the morning. Pain, nausea and even more painful vomiting. However, no way is this gal going to let that interfere with our very first Halloween celebration here in the country! Nope.

Actually...our very first and our very last celebration of Halloween. We never got to celebrate Halloween last year due to it falling on the week we were moving into our little hidden lemon gem of a find! Hahahahaha! Yes, we can FINALLY laugh now! We are actually back on schedule with the remaining indoor and outdoor projects in order to finally realize this great house flip! It has literally been an official year of repairing, repainting and redecorating one room at a time.

Country Coastal  Chic!

Thank goodness things took a lot longer than we actually had anticipated to finish our great house flip. There has already been several houses, all within the same area, that have either sold or just went up on the market. Close call on waiting until next year, early spring, for reselling our home here in the country. So...for now it's all about having a bit of fun!

The ole saying is true! They most definitely do everything much, MUCH bigger here in the country! Over 150+ young and a bit older trick or treater's that greeted us this evening! A lot more than what we used to have back in the city. It was nice to actually have the chance to meet many of our neighbors who live along the wooded hillside. Even those, much like ourselves, who are in process of flipping their own home and reselling to move further out in the country. Our goal destination, final move, still remains out west in Nevada. But if the good Lord does not see it fit, due to my health. Then we will move forward with our back up plans. Another home, but lots more land, further out in the country.

Peace & Quiet....Ahhhhh....

Our very first, and our very last Halloween here in our little, lazy, river town, could had not went more perfect! Isn't it crazy, how when things are just meant to be, everything will go as planned. Right down to the very first and very last Halloween SPOOKTACULAR minute! Of course...I got to celebrate it with my hubby and that folks doesn't get any better than that! We had so much fun! Far too many smiles and more than enough laughter! Far too many selfies and candy to pass around for the ghosts, goblins, oh-so-sweet and even the most scariest of trick or treater's in their best Halloween attire! They most definitely do it 'right' here in the country!

This evening was just meant to be. Me and my honey having the most fun celebrating a SPOOKTACTULAR HALLOWEEN!

Tomorrow it's an early wake up call. The very first day of November. A decision that led to my medical port procedure. Till then...

Here's wishing you and yours a very HAPPY HALLOWEEN!


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: November 1, 2017 6:03 AM EDT
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October 30, 2017
LAST CALL~UNITED GP WALK..2 DAYS REMAINING "WALKING-RUNNING-RIDING" FOR GASTROPARESIS AWARENESS :)
Mood:  rushed
Now Playing: Day 2855-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Can you believe it's already that time?!

LAST CALL!

"UNITED GP WALK

WALK-RUN-RIDE

2017"

**Only 2 days left remaining

 "WALKING-RUNNING-RIDING"

for Gastroparesis Awareness**

Why not grab your walking, running or riding shoes while grabbing a few Halloween trick or treats helping to raise International Gastroparesis Awareness with the Gastroparesis Awareness Campaign

Bring your neighbors! Bring your friends! Bring your selfie stick too!

Let's all join together helping to raise Gastroparesis Awareness one person at a time!

YEE-HAW! WOO~HOO!

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: November 1, 2017 4:22 AM EDT
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October 29, 2017
True Humility~
Mood:  special
Now Playing: Day 2854-Next GP Chapter... Turning Lemons Into Lemonade :)

 

This is a first weekend, in a very long time, where I have to admit...it was perfect and peaceful.

Of course, I love this brisk, cold early winter weather! I love fall, but even more so, I love winter! I just love the cold weather in general. Let's not forget...my love for snow and lots of it!

Not only was it one of the nicest weekends yet for both of us. In such a very long time. But we also got to enjoy some at-home Halloween festivities, even a bit of rice krispy making! Eric's tummy is going to be mighty full of some serious snap-crackle-pop over the next few days, possibly over the next week. It really all depends on how fast he inhales the entire tray of rice krispy treats...HA!

It was so very nice, spending lots of quality time together as a little family. I wouldn't trade time like this for the world!

LOVE~LOVELOVE

Even time spent with this lovable furry guy!

I have to admit. We had so much fun over this weekend. Enjoying the little things in life. That I really didn't think much about, if at all, my decision regarding a medical port. Nah...it can wait until tomorrow. Another week and a long list of things we must do. Appointments we must attend regarding my health. Even weekends like this one, in which, I really didn't want to see it come to an end. Sadly, all good things must come to an end. This, I know. But there is always next weekend to enjoy some smiling fun and lots of laughter. Together...as family. Amen.

There is a true humility to wondering if today is your last day. If tonight is your last night. If this moment in time will be your last while still alive. That's true humility. It changes a person.

 


Posted by GastroparesisAwarenessCampaignOrg. at 10:35 PM EDT
Updated: October 29, 2017 10:41 PM EDT
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October 28, 2017
A NEW Twist On The Same Ole Pumpkin Carving Tradition! :)
Mood:  happy
Now Playing: Day 2853-Next GP Chapter... Turning Lemons Into Lemonade :)

 

It's about time we caught ourselves up with the holidays!

Time to put our pumpkin carving skills to the test!

Knife-less.

This year we decided to throw out the same ole pumpkin carving traditions and instead opt for something totally different!

Not only do we not have to worry about throwing away a rotting pumpkin a few weeks after Halloween. But we can as well enjoy our super country chic pumpkin through out the next holiday season, Thanksgiving! I have to admit...this pumpkin turned out magnificent!

2 hours later...TADA!

Not only was it super fun using my creative side to create a 0ne-of-a-kind pumpkin masterpiece worth saving and sharing! But I did so using left over material and other fabrics from other projects that we did over the summer. Waste not, want not and nothing went to waste!

I was even able to take some left over burlap and fireplace cover material to create a platform for the pumpkin to sit with lots of Halloween goodies! 2 hours worth of peace and quiet while starting a new family tradition of the same ole pumpkin carving. Totally unique and totally fun!

We still need to work on how we are going to set up a table outdoors for all the trick or treat kiddies next week. But you know me...I already have a few ideas in mind!


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 29, 2017 9:55 PM EDT
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October 27, 2017
Do YOU! Do What Makes Your Heart The Most Happiest! :)
Mood:  hug me
Now Playing: Day 2852-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Decisions...Decisions.

Sure! Why not? Look what arrived in the mail today from our insurance company. Third try was a charm for my doctors when it came down to forcing our insurance company to cover one final option, experimental oncology treatment. Isn't it crazy, how once again, life happens. This time...delivered via mail.

Did this change my mind in the least bit to possibly reverse my decision? Not in the least bit! No way, no how, no more experimental treatments for this gal. Let life lead me the way to happiness through out the remainder of my journey. No more toxic torture oncology treatments. No way, no how.

Decisions...Decisions.

To port or not to port? That is the next question. The question to ponder my decision on over this weekend.

Sure, I know it means less poking and prying. Trying to retrieve blood from a good vein. God knows last attempt at the hospital required having to get someone from the lab to draw from a different vein in my other arm. The nurse needed 10 vials, however, my vein was only able to fill 3. It took a few hours of rest before the lab technician could find a good vein. Ports are great in helping to avoid issues such as this and in helping to administer medication, however, there is also a risk of infection. Last thing this gal needs!

So....looks like decisions...decisions will be pondered over this weekend.

I am more so focusing this weekend on taking the time to enjoy the little things. All the surprises and gifts that life brings. Passions of mine, which include the furry kind. God's creatures, both big and small.

Even those who need our help and assistance the most during these upcoming cold winter months. God's rescued Angels~

This weekend, don't forget to take time out for yourself. Do YOU!

Do what makes your heart the most happiest


Posted by GastroparesisAwarenessCampaignOrg. at 11:37 PM EDT
Updated: October 27, 2017 11:50 PM EDT
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October 26, 2017
What Does This Now Mean For The Remainder Of My Life?
Mood:  sad
Now Playing: Day 2851-Next GP Chapter... Turning Lemons Into Lemonade :)

 

It was just meant to be. Today was the day to contact my doctor's office in order to let them know my decision.

Ironically, they are the last ones to know. As a blog reader, you were the first to know my carefully thought out decision regarding one final experimental treatment option. Why? It is very hard to let a team of specialists know that I finally gave up. Because in all reality. That is really what is going on with my decision. I gave up on trying to defy something that is humanly impossible for me to defy.

Radiation therapy and other experimental oncology treatments failed to defy what can no longer be defied, internally.

For me, today was the toughest day of my entire life. Literally handing over a decision that will change my life. Forever...in an instant. Ironically, my doctor's office ended up beating me to the punch after leaving a voicemail on my phone while I was sleeping. Ha! Isn't it crazy how things happen? All while you are sleeping.

"Hello this is so and so, with regards to your decision moving forward with scheduled treatments. I don't want to make you feel rushed on your decision. However, the pharmaceutical company has been faxing our office on a daily basis, trying to reach you in order to get your authorization. They will need your verbal consent first before shipping out the drug in order to start your first scheduled treatment."

Funny enough, how everyone makes medical marijuana such a huge issue. Although...we are willing to try such lethal experimental treatments on patients at end of stage cancers with various experimental drugs. I have run into those who work in the health care industry that are against my little magical pill, Marinol. Yet, that potent main ingredient found in marijuana, placed into a tiny little gel cap, has provided me a lot of positive relief over the past 15 months. More so than any experimental oncology treatment. Yet, why are doctors so quick to push these experimental treatments that literally can do more harm than good?. Yet, are so controversial about legalizing medical marijuana which holds many positive benefits for all patients. Whether alone are very hush-hush with even prescribing my little blessing in disguise...Marinol, marijuana via tiny pill form without any additives. Clearly, we have a lot of work still left to do in the healthcare industry when it comes to making sure patients that are at the end of their medical journey are given the best possible options to live the best end of life possible. AMEN.

After listening to the voicemail, and wiping away my tears. I decided to email my decision to their office...instead of calling. Emailing their office was a lot easier to give my final decision on one last option at another experimental treatment. Mainly due to mixed emotions running rampant in my mind. The worst emotion...feeling as if I might possibly be letting my team of specialists down. Yes, these are honestly true feelings that overcome you when making such a critical life changing decision. The end of my journey. It wasn't easy typing out my decision with a very brief, to the point explanation. But today had to happen. It's part of the journey.

"After carefully reviewing information on the experimental drug, which really isn't meant to be used for my advanced condition. I have come to the decision that the overwhelming risks. Far outweigh any possible benefit. I do thank all of my doctors for giving me one final option. Thank you for reaching out to me this morning. Have a blessed upcoming weekend."

Today was a very somber day. Yet, I know that my decision was the right one. I stand firm on my decision as there is no possible way that my body could handle such a powerful experimental drug therapy, more than 4x the normal suggested therapeutic dose. That fact alone, was one of many that helped to make my final decision.

What does this now mean for the rest of my journey?

Only God knows that answer.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 27, 2017 6:10 AM EDT
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October 25, 2017
Handing Over My Blog Baby *:)
Mood:  d'oh
Now Playing: Day 2850-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Today was the day!

Talking about being nervous as my blog baby was finally handed over to the publishing company. Blog baby... that's how I view this blog which has over 2,800+ entries and still going strong!

Talk about a LOT of hours logged behind the screen!

I had already decided to sign over rights with my blog to a very reputable publishing company a few years ago. The reason for the delay was in order to make sure that this was the route destined to be taken. I needed to make sure that the vision for this blog is mutual between myself and the publishing company. The right publisher who can carefully dissect this blog and figure out how to best work the chapters into a series of sorts. A long journey about my life. All the ups, downs, ins and outs. Now safely in the hands of those who will be carefully deciding which direction needs to be taken next with this blog. In the meantime...plans are still full steam ahead in launching this blogs new home which is set to happen next month. I am not sure on the exact date, but it will most definitely happen in November.

It may work. It may not work. As I have always believed, trying is half the battle. Regardless if the new site works or doesn't work. I am determined as ever to give it my all.

'A' for effort!

Tomorrow is going to be a very long day. I have two back-to-back doctor appointments. Then we have an electrician coming over that has been scheduled by our warranty company. Eric needs to drop off his car down the street for an oil change and issues with the tire monitoring system that needs serviced. Thank goodness for the warranty and realizing that we had a years worth of free oil changes. Two paid oils changes later..HA! We still have yet to decorate our pumpkin for Halloween as well buy candy for all the trick-or-treaters. There is also a few outdoor projects that need to be finished before winter. Water proofing the outside of the basement wall and filling in settlement cracks where needed. The other minor repairs still left in our great house-flipping project can slowly be finished through out the upcoming winter months. This will at least give Eric something to do while I am resting. It's been tough lately with my health. More bad days...than good. Trying to get the pain under control and non-stop nausea has also been tough. I still need to keep up with daily fluids, but in all reality, I do better just not drinking anything at all. However, I know that is not feasible.

Tomorrow I have to contact my specialist's office to let them know that I have decided against one final option with the experimental chemo drug. It's going to be tough making that call, but it has to be done. It's like closing another door. Completing another chapter to a very long journey~

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 27, 2017 4:54 AM EDT
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October 24, 2017
Sometimes...There Is Never A Right Decision.
Now Playing: Day 2849-Next GP Chapter... Turning Lemons Into Lemonade :)

 

This was a rather appropriate blog to not have a 'mood' smiley attached below the title.

I mean...really...who can place any sort of smiley mood below a title regarding a life changing or a life ending decision.

It has taken me a while to come to a final decision regarding one final experimental treatment. A highly toxic, very long list of side effects, both short term and long term, chemotherapy drug. A non-FDA recommended drug that was given to me as one final option. An opportunity to 'possibly' bide me a bit more time...6-12 months...but without more than a slue worth of side effects. A very high mortality rate than any other treatment that I have received since the great medical mystery was finally solved last spring, May 2016.

It has literally taken me this long to finally come to a definite decision this evening. The reasons are pretty self-explanatory. I wanted to make sure that I gave myself every reason in this lifetime to either move forward with an extremely risky treatment. Or find every possible reason in this lifetime to decide against moving forward with one final treatment option. A chemotherapy treatment drug that would be given to me, 4x's the normal dosage for most patients.

But who I am to be fooling myself?

I am far from any 'normal' patient.

Eric has firmly stood his ground when it came to his decision. He was overwhelming against using such a very controversial, yet very powerful experimental treatment. A means to possibly, once again, find a way to stop feeding not just the tumors which have more than doubled their size over a mere 4 months. But as well try to shrink lesions. It's a huge risk and a far more riskier chance with odds not in my favor by using this drug. Compared to the risks vs. benefits when I agreed to a fast-track, maximum lifetime course of radiation therapy. However, things have gotten a lot worse since my last rescan. A mere 4 months ago, in which, no one could had anticipated for the largest tumor to gain such strength and continue growing so rapidly. Finding a way to starve off tumors is almost nearly impossible. In the oncology sense of things. Oncologists only have what is available to them via government funded research which brings experimental drug therapies such as this one. Needless to say, this was the only last option that my team of specialists had left to offer me.

My decision stands firmly today. I have decided against the experimental drug due to the overwhelming fatality risks vs. any type of possible benefits.

What does this mean for me? It means facing a surreal reality. My journey now means the journey to the end of a very long battle not just for myself, but for our entire little family.

Through out these past 18 months. I have learned so much about myself. That spit fire, one HELL of a FIGHTER, that I had become! The ups, downs, ins and outs. Times when I not only truly believed, but literally defied the odds. This time, however, I am not that fortunate. The internal war within has not only defied the laws of oncology treatments, but has taken over most of the lower region of my body, while literally fusing my organs together. The lesions and tumors have not only gained strength, but once again show blood flow, supplying the feeding vessels. Sadly, everything has progressed to the point of being out of control and nearly impossible for my team of specialists to manage.

I went through all the proper chains over the past several days. Finding everything humanly possible about this particular chemotherapy drug that is really not meant for my unique set of medical circumstances. The drug manufacturer, their medical team, our insurance company, their drug coverage team and even their specialty drug coverage team. Although, it meant having something for my doctors to offer me, one final option, one last attempt in hopes of biding me more time. Attempting the impossible, which is starving off what has already grown to have the strength to more than double it's size. The side effects, financial costs and mental as well physical strain on myself and Eric just has proven to be too much for such a huge risk with this drug. Our insurance company had literally already denied the experimental drug coverage twice, before finally approving it yesterday. The problem is financially, our out-of-pocket costs, along with instant side effects, short term and then long term, would be even more costly. Not having another drug to counteract possible fatal side effects was another huge deciding factor for me. I can't imagine having one course of treatment possibly taking my life in a mere instant. All to bide time, when time could had been mine if I had opted not to move forward with such a risky treatment. Suicidal thoughts, severe depression, severe muscle pain, permanent bone mineral density up to 17%, cracked teeth, jaw pain, severe gastrointestinal disturbances such as vomiting, bowel obstruction, renal failure, body temperature dysregulation, severe hyperglycemia, new onset diabetes, high blood pressure, blood clots, cardiac arrest, migraine, dizziness, seizures, facial paralysis, blurred vision, permanent hearing loss, hypersensitivity to sound, severe sensory and motor disturbances, early onset dementia. Hair loss...what I was told... could be permanent. Hair loss was the least of my worries from the three tier, long list of side effects.

I am scheduled for my next rescan and labs late next week. This after already rescheduling from this weeks rescan appointment. Needless to say, this gal needed a week break from being poked and pried. My unique, yet rare, medical case is still in the hands of the rare cancer institute. If anything, I can only hope that my medical documentation can help the next patient. Hopefully, there will never be a next patient, #14. If so, at least my medical case documentation will be available for the patient and their team of specialists. It's been hard for my doctors just trying to wrap their brains and medical expertise around a case such as mine that has not only been quite rare, but extremely difficult to manage. I am very grateful and beyond thankful for all of their hard work. Next month, I begin oncology care with a new oncologist located within our area which will help out tremendously when it comes to dealing with the pain. Traveling in the car, for longer than 15 minutes, is now far too long for me. Yet, I am still in the beginning phase with my new pain management doctor. The first round of injections did not work to help manage my pain. It's once again, solely trial and error. That means taking a bit more time, yet still remembering to have the utmost patience.

There really is a lot to write about regarding this chapter of my journey. But for now... this is enough. As my decision has been made. I stand firmly. There will be no further experimental drug therapy. Not with a chemo drug that is far too risky for my liking. It's about the quality of life for me. Not the quantity of days that could possibly be left with more suffering by the hands of an experimental drug treatment. My current symptoms are difficult enough to handle on a daily basis.

Sometimes...even with my decision against moving forward with one final treatment option. There really wasn't much of an option, yet alone, much of a decision. But all you can do, is continue living life the best way you know how, giving it all you can with what you got.

At the end of the day... I have no regrets.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 25, 2017 3:14 AM EDT
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October 22, 2017
***UNITED GP WALK-2017...The FINAL Week Raising Gastroparesis Awareness***
Mood:  rushed
Now Playing: Day 2847-Next GP Chapter... Turning Lemons Into Lemonade :)

 

 

Here we are...as we are quickly approaching the final week for the 8th annual:

 

UNITED GP WALK

WALK-RUN-RIDE

OCTOBER 2017

Shirt orders are still coming in...as we speak. However, due to the printing company needing 7 days to print and ship orders, we can not make guarantees. As a reminder...all shirt orders and other gear are sold at cost, with free shipping. We do-not-profit from shirt or other gear sales. As we remain the only sole Gastroparesis non-profit organization that is and will always remain...free.

Myself and Eric, along with the rest of our little family, took our walk for Gastroparesis Awareness over this past week. When a good day blesses me...I make sure to max out my time, that included walking for Gastroparesis Awareness during our 8th annual worldwide event.

We had a picture, perfect day, crisp air and the most beautiful clear skies! I hope everyone's, United GP Walk-2017, is the most perfect too!

This coming week and through out the remainder of the month. We will be celebrating Gastroparesis Awareness in the great states of Nevada and our current home state of Indiana. The Gastroparesis Awareness Campaign will also be making international news! And...soon enough...so will this blog with more to follow at a later date!

CHEERS to celebrating 11 years of raising Gastroparesis Awareness!

And most importantly...

Thank YOU!

 

 


Posted by GastroparesisAwarenessCampaignOrg. at 6:05 PM EDT
Updated: October 22, 2017 6:16 PM EDT
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October 21, 2017
HAPPY SWEETEST DAY! :)
Mood:  happy
Now Playing: Day 2846-Next GP Chapter... Turning Lemons Into Lemonade :)

 

HAPPY SWEETEST  DAY!

LOVE~LOVE~LOVE

This is the very first year. That I actually forgot all about today being Sweetest Day. You know...those gentleman who are rushing to the nearest store at the last second in hopes of finding the perfect card and gift. Hahahahaha! That was me...just the female version today! Hahahahaha!

Needless to say...I spent an entire year, last year, believing I was actually a year older than what it says on my drivers license. And...I be darn! If I didn't do so again this year! GEESH! My oncologists' assistant actually caught my lack of memory regarding my age on the phone yesterday morning. BAH!

 "Ummmm...it says here on your insurance information that you are a year younger? Is that correct?"

Darn! If I didn't literally make myself an entire year older again this year, for almost the entire year! Hahahahahaha! Sure, I guess I can laugh about it now. But Eric finds it quite concerning, however, the memory does get effected by internal issues within. My oncologist feels no need to worry. It's perfectly normal. Just don't assume that I know my age if you ask me. BAH!

Since I failed to remember that today was Sweetest Day. Thankfully we have a retailer two seconds down the street! Thank goodness for also having lots of Sweetest Day cards left over among their huge selection! Eric isn't picky. Not in the least bit. He just reminds me that having me with him another year is the best gift that one can get. XOXOXOXO

So today...we decided to have a low-key Sweetest Day celebration of sorts. Nothing really fancy. Just lots of love and plenty of rest. Shared together...as a family.

Mittens and Big LOVE had plenty of fun with red ribbon, actually even laying across the floor as if cuddled together like the shape of a heart. Beary kitty lounged on the big cat tree in front of the dining room window. While Snoreo took a nice nap with his daddy after running at our local dog park with the rest of his canine friends here in the country.

I can't believe that this month is quickly coming to an end! At least we were able to finally enjoy the fall season, and perfect weather! This will be our first year, yet sadly, our last year celebrating Halloween here in the country. Our current home, a lemon of a gem that is almost complete, turned into SWEET LEMONADE...will be placed on the real estate market next year, early spring. We have one final move, our goal destination that awaits us. The Nevada desert, majestic red rock, picture perfect mountains and a fresh new start for our entire little family. I plan to fight with everything I got in hopes of making sure that this gal...realizes her DREAM~

Here's wishing YOU...a very super SWEET & most B-E-A-U-T-I-F-U-L Sweetest  Day with your sweets!

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 22, 2017 5:46 PM EDT
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