« November 2017 »
S M T W T F S
1 2 3 4
5 6 7 8 9 10 11
12 13 14 15 16 17 18
19 20 21 22 23 24 25
26 27 28 29 30
You are not logged in. Log in
Entries by Topic
All topics  «
Road to Survival
Blog Tools
Edit your Blog
Build a Blog
RSS Feed
View Profile
The Road Before & After Surgery
October 18, 2017
Is It Worth The Risk?.
Mood:  quizzical
Now Playing: Day 2844-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Well...it looks like Mittens kitty has a new best friend!

Mr. BigLOVE

These two are absolutely hilarious and quite adorable! Beary kitty is the laid back one who always enjoyed lounging the lazy days away with Cuddles. Beary sure misses Cuddles and it's hard seeing her looking through out the house for her friend. Thank goodness for BigLOVE to the rescue! He has been working double-time keeping up with both Beary and Mittens while playing among the two. So much for Eric washing the sheets and blankets. Heeheeheehee!

I am still doing my best, on my good days, getting the new website ready for this blog. Honestly, I have been sleeping more than anything right now. When my body needs rest...I rest. Over the past week...maybe a bit more rest than usual. Keeping mobile is still very important. I can't lay down or sleep for too long of periods at a time. Yet, it's still very hard to not do anything, but sleep. In between having to now take various medications in order to continue functioning through out the day. My body still has yet to adjust to the side effects. We were told, it will take time. As my energy still remains extremely low.

This morning, I received a few phone calls. One of those calls turned out to be quite a surprise! It seems that the new oncologist had a change of heart in taking on such a complex case. This is actually good news since one of her offices is only a mere 5 minute drive down the street from where we live. YAYYYY! It doesn't mean we won't have to sometimes make our way back across the state line to Ohio where my other team of specialists practice. But at least now I have someone within a very close proximity. Especially on days when the pain doesn't allow for a long drive in the car with bumps in the road making things a million times worse. This afternoon, I had my first session with a local pain management doctor. My very first spinal injection to hopefully at least take a bit of edge off the pain. If this doesn't work. Then it's back to the normal round of various narcotics to help me out which means more GI meds to take for motility. It's like a game of chess with no good move on the board. Damn if I do...damn if I don't.

With still starring down my temporary work permit from SSD. I sure hope to have at least a few good days through out the upcoming weeks. Our traveling tickets for the show taping are still on hold. Yet, I still also refuse to give up on two separate online ventures that just need for me to start feeling better so I can finish the web designing. A soft opening of the website of sorts still in the making. Rarely, do I give up so easily. But then again, I have yet to ever be in so much pain, non-stop, 24/7. With my intestine now literally flipped and the largest tumor causing more problems and sheer hell than ever before. I will far more appreciate the good days that may lie ahead of me. AMEN.

Late this afternoon, I received a phone call that we had been anticipating with regards to experimental treatment. My decision has firmly been made over the weekend. What I need is a bit more information to seal my decision. Finding out on the phone from the medical representative for the drug manufacturer, that the dosage that was given by my specialists, was one bit of information for sealing the deal on my decision. A dosage that is literally 4X of the norm that is given for patients receiving the same experimental treatment. A treatment that can only be used for 6 months. My specialists ordered for 12 months. If I ever questioned or denied just how bad things have gotten for me, internally. I will never, ever question again. Disappointing? You bet! The most damning bit of information I received on the phone to help seal my decision is knowing that only one injection could end it all. After the phone call, in which Eric overheard everything since we had the call on speakerphone so we both could partake, "Are they trying to literally just kill you with one injection?!?" Is it worth the risk?.

More of that...tomorrow.

In the meantime. It's about time to enjoy a bit more Halloween fun! A silver lining of sorts with some friendly Halloween faces!


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 19, 2017 2:45 AM EDT
Post Comment | Permalink
October 17, 2017
Change...Change...Change.
Mood:  bright
Now Playing: Day 2843-Next GP Chapter... Turning Lemons Into Lemonade :)

 

You know what I love best about writing?

All of it's therapeutic benefits. The ability to not only speak your mind, but release your mind.

Our normal daily life, has once again changed. No longer waking up to our beloved Cuddles kitty wanting to be held in order to sleep on our lap is no longer. The many alarm clock reminders on our cell phones have now went silent. Changing out food, washing her bedding, throwing away can after can of specialty high-calorie prescription food, now sits in the cupboard with the rest of Cuddles medication. It's strange...when you lose a fur child. Everything with your normal routine changes. Life changes. Nothing...is the ever same. It's all really quite sad and incredibly strange. Yet, we are reminded that her spirit still remains.

Change...Change...Change.

We have yet to hear from the insurance company regarding if they will cover another round of non-FDA, experimental oncology treatments. Another experimental round of another drug that no one really knows for certain if it will even work to provide me any sort of longevity or relief. 6-12 months of additional time in hopes of possibly stopping the clock of rapidly progressing issues with my health. The risks are unreal. The complications with even using this drug are even riskier. Not having another drug to help reverse an instant side effect that could be fatal. The biggest risk, yet scariest fact of all when it comes to making such a life-changing decision.

What has been the most disappointing of all during the last several months happens to be with long standing friendships. Friendships that have exceeded way past several years. One actually lasted 13 years. The other happened to be almost 10 years. Let's just say, that I am a very loyal person, especially when it comes to my friendships. Yet, once again, unfortunately even those whom were once close to you, grow tired of the same thing I am fighting. The right to be cured. A much more normal life. Some sort of lifestyle that includes having fun.

With trials and tribulations. This gal has become stronger than ever before! There isn't a great wall of china built around me in order to protect myself from getting hurt by others. In the emotional sense of things. This gal has a wall that defies all gravity. A darn good reason why as once again, another friendship is no longer. Sad isn't it. How some people find rhymes and reasons, that make absolutely no sense, to literally fall off the face of the earth. Yet...for those who have done nothing to deserve such hurt by a friend. Are usually the ones left standing there shaking their head in utter confusion and sheer disappointment. No way, will I allow myself to be treated as such, not any longer. As an extremely loyal friend, as anyone would, we all deserve an explanation from friends who literally POOF! Disappear without any sort of explanation. Yet, through trials and tribulations. I have grown stronger. Much stronger than ever before! When friendships of many years just fall apart due to the other party literally disappearing on me. To never be heard from again. I view it as their loss. My gain. If a friend doesn't respect you enough to explain why they no longer contact you. Then clearly, they are not the type of people you need in your life. These are not friends.

Sure, I understand that those who battle everyday with long-term medical conditions are not of this norm. Their lives are far different than those who live a normal lifestyle without restrictions. Yet, what happened to true friends who stand by your side, through thick and thin? Seems now and days, friends are merely just acquaintances. Even so much as only staying in contact with you if you have an open social media account such as Facebook. I had two great friendships literally blow~away like dust in the wind this year. One was a friendship of over 13 years, in which, I found out the hard way that I really didn't know the person. Dark secrets. I am huge on trust and when someone lies to you for over a decade. It's hard to trust the person again. Whether alone, even know them. Especially when they were never the person you believed them to be all along. Finding out they are a completely different person was beyond shocking. Both for myself and Eric. Yet, I still gave this person the benefit of the doubt. Even so much as forgiving them. However, after extending my hand of support out to this friend. I never heard back from them again.

This week, I ran into another issue with a friend of almost 10 years. I honestly didn't think too much when they had disappeared off the friend radar over the past month. Yes, it was strange and most definitely not the kind of behavior that I was used to from such a dear and close friend. Lately, the friendship consisted of me reaching out to them. But only to receive odd text messages back that they were too busy to talk. Two weeks ago, I received a text message from this friend of almost 10 years letting me know that since their girlfriend was moving back into their home. They were absent due to needing to soul search a bit. However, our friendship as they told me, was something they valued. Needless to say, I never heard back from them again.

I guess I am different when it comes to value and respect. I value and respect my friendships. I have always been a loyal friend through out my entire life. Treating friendships as if they are at your disposal is something that I no longer put up with nor will tolerate from anyone. What I value and respect the most, after trials and tribulations, is...myself. I no longer allow myself to be someone's pushover. When someone can not even have the respect nor human decency to contact me. Even for a mere second to say, "Hi, how are you doing?" Then clearly, they are not a friend by any means. In this day and age...do true friendships even exist. Or...are friends really only just mere acquaintances.

Change...Change...Change.

I didn't ask for a lifetime of being sick. Who really does such a thing? But I also will not tolerate being treated as a friend at anyone's disposal or as less of a human being. What is really a sad shame, is that Eric was actually getting to know both friends of mine. Then POOF! out of nowhere...they disappeared. But as we all know...life goes on. Friendships, much like life, sometimes must also go on. Out of sight, out of mind. But same as with doors. When one door closes, its for good reason. So another door can open with those who will truly appreciate you and value your friendship.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 19, 2017 12:47 AM EDT
Post Comment | Permalink
October 16, 2017
Saying Goodbye :(
Mood:  sad
Now Playing: Day 2842-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Another emotionally spent day.

Saying goodbye...is never, ever easy. I don't care what anyone says. It doesn't get any easier after losing another beloved family member. Our little Cuddles angel, was welcomed home to heaven at the age of 19 years young. Young...because in my heart, she will always be my Cuddles kitty

The emotionally charged, past few days have been tough. Physically, the nausea, pain and vomiting have increased due to the overwhelming stress. Sleep? What's that?. After having to seek assistance from our veterinarian to help Cuddles gently continue her journey back home to heaven. I can't describe what it's like having to sit and hold your beloved fur child while the injections slowly help to ease the pain and suffering. Cuddles has been part of our family for over 19 years. The last of my original 6 rescued fur angels.

 Cuddles is now with her siblings. Back home...in heaven.

Physically and emotionally. Myself and Eric are both beyond spent. This has been a very tough week. As we are helping Cuddles. I also have to keep in mind, helping myself. I have a very difficult decision to make regarding my own life. But as of yesterday. I have come to a definitive decision. Some may dislike and some may even disagree with my decision. But everyone is entitled to his or her own opinions. I received many opinions from others when it came time to decide regarding a fast track, maximum course of radiation therapy and a few other oncology treatment drugs. The difference between myself and Cuddles is that she needed our assistance in making such a very hard decision. We gave it a few days, but Cuddles health was deteriorating far too rapidly for her to pass peacefully at home. Early this morning, Cuddles peacefully passed onto a far more beautiful place where she was greeted by her other rescued siblings.

 Heaven.

As we did so with our other beloved fur children. We brought Cuddles back home so her fur siblings could understand what had happened. I believe this to be a very important part of grieving, because even animals grieve. Snoreo was the first to walk up to Cuddles resting peacefully while wrapped up in a few of her favorite sheets and kitty blanket. It was the most amazing thing to watch Snoreo literally walk up, sniff and then kiss Cuddles on the nose. Big LOVE took only a mere instant to realize that one of his new best friends was to be no longer. Not in the physical sense, but very much still alive with us, spiritually, energy. Big LOVE sat the longest while Eric called to set up a time for a private crematory service at Faithful Companion. We have unfortunately made far too many calls to Faithful Companion over the years. I know things happen for a reason. All I can believe in my heart is that they wanted to be together. Waiting for me to arrive, so we can cross the Rainbow Bridge...together.

Sharing this part of my life, a very private part of my journey is very important. Sharing allows other fur parents to understand that when the time comes. There are options. It doesn't mean having to bury your beloved fur child, or keeping them with your veterinarian. There are wonderful, kind, compassionate companies out there who offer services and other options for our beloved family members. Our faithful companions. Pet crematory services, private crematory services such as we have used with, Faithful Companion. Having a private crematory service, while having the time to grieve our loss. Knowing that we will be bringing home Cuddles just in a different form. It's beyond reassuring! I wouldn't handle the passing of any of our fur children any other way. There are options out there. I hope by sharing this part of my journey. You too, will realize that other choices do exist in hopes of bringing your beloved fur child back home to be with their family.

Our life...has once again...forever changed.

The normal routine, that once existed, is no longer. Losing a fur child is never, ever easy. But I know the good Lord has his angels wings gently wrapped around our beloved Cuddles. As she is now back home with her other siblings. In a most beautiful place...Heaven. 

Grieving. It's perfectly normal. It's most definitely okay. We all grieve. No matter the loss. But rest my weary and be assured. That the spirit, still remains.

http://www.faithfulcompanion.com/


Posted by GastroparesisAwarenessCampaignOrg. at 5:57 PM EDT
Updated: October 16, 2017 6:03 PM EDT
Post Comment | Permalink
October 15, 2017
In Memory Of Our Beloved Cuddles Kitty
Mood:  sad
Now Playing: Day 2841-Next GP Chapter... Turning Lemons Into Lemonade :)

 

This is the part about life that hurts the most.

When a beloved fur child, member of the family, begins the end of their life journey.

Cuddles kitty turned 19 years young on Mother's day. She is the last of the original 6 rescued fur children. Almost 19 years and 6 months is a very long time for a feline angel such as Cuddles. We knew this day would come. However, if only it would had come at a much later date. It's been a rough week as we approached a far rougher weekend. Physically and emotionally.

Our beloved Cuddles had started feeling not so well a few days ago. In fact, Cuddles kitty had collapsed on the living room floor which sadly resembled the same as our beloved Oreo when he had a stroke. Since then...Cuddles health has quickly began to decline. We had been using IV fluids to help keep her hydrated at home. Cuddles is also on prescription critical care can food. Over the past few weeks we had went from Cuddles eating out of the bowl on her own. To literally hand feeding her through a syringe. Over the past week, Cuddles has literally began to fight off Eric when getting ready to insert the needle for her IV so she can stay hydrated. The same with feeding her through a small syringe so we could make sure her weight remained stable.

Over the past week....things have quickly changed. Everything in our life has flipped upside down and inside out. Life...once again...has quickly changed.

I am grateful to the good Lord for allowing me many years to spend with all of our beloved fur children. I am beyond blessed to have spent so many years having the companionship of all my little angels. Their unconditional love is something that can never be denied. They never faulted to be there for me, by my side, when I needed them the most. As humans...I have experienced quite the opposite during my hardest trials and tribulations. During oncology treatments and many surgeries. It wasn't the kindness, compassion and love from humans that helped keep me fighting. In fact, that support didn't really exist. It was actually the love, tiny kisses and warm snuggles from our beloved fur children that kept me going. I had to keep fighting for them. That unconditional love kept me going and it will continue until the very end.

This evening we began the extremely hard, very sad and beyond emotional process of having to say goodbye to our beloved Cuddles kitty. Another fur angel that is being called back home to heaven. Her other fur siblings are waiting for her arrival. I know...because not only do I believe in heaven. But I have seen a glimpse of it with my aunt as she made her way to heaven.

Having to go through this loss is going to be devastating. We just lost our beloved Littleblue to a very aggressive cancer a mere four months ago. Yet somehow, I always believed deep in my heart that my fur children would want to reach heavens gate before me. So when my times comes, they would all be able to greet me at the Rainbow Bridge so we may cross it...together.

Life. Life sure doesn't seem fair at times. Life. It even sometimes throws us more than we believe we can handle. But life has it moments when one can truly begin to understand it's meaning. Love is a bond that you just can't break. Love~is a wonderful thing when you can spend it together.

Such a wonderful way to begin the end of Cuddles journey. By doing so as a family. Together


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 17, 2017 1:55 AM EDT
Post Comment | Permalink
October 14, 2017
Out Of The Darkness
Mood:  bright
Now Playing: Day 2840-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Many thanks to Richard for sharing this article with me. As I now share it with you.

Richard is bravely battling stage 4 prostate cancer after being diagnosed last year. Christmas eve. Richard was rushed into surgery on Christmas day, followed by a course of radiation therapy. Sadly, Richard was given the news this week that his cancer had returned.

Thank you Richard for being my sound board...literally...as I explain that one at a later date. Thank you for your honesty regarding your own personal battle. Yet, final decision regarding his own last option given by his oncology team earlier this week, Monday. I can not begin to express how much respect I hold for patients like Richard. Those who get up, get dressed and do their very best to continue living life. Richard is proactive and refuses to live in silent as he continues to bravely battle his own cancer demons.

I look at this article as a means to a silver lining.

There is always a silver lining...even during our darkest days.

 

Can Suffering Make Us Stronger?

The positive effects of turmoil and trauma
 

You've probably experienced the negative effects in your own life, or at least been aware of them in people close to you—for example, a soldier who has returned from combat and suffers from post-traumatic stress disorder; a woman who has recovered from an episode of cancer but who can't sleep at night and feels a constant anxiety that the disease will return; a person who's been through a painful divorce and feels intense hatred and bitterness to her ex-spouse; or a person who feels depressed after becoming disabled through an accident.

However, in recent years, psychologists have become aware of phenomenon known as ‘post-traumatic growth.' This term was originally coined by the psychologists Richard Tedeschi and Lawrence Calhoun, who interviewed many people who had suffered traumatic life-events such as bereavement, serious illness (such as cancer), house fires, combat and becoming refugees. They found that, for many of these people, dealing with this trauma was a powerful spur for personal development. It wasn't just a question of learning to cope with or adjust to negative situations; they actually gained some significant benefits from them. In Tedeschi and Calhoun's terms, they experienced ‘positive life changes.' They gained a new inner strength, and discovered skills and abilities they never knew they possessed. They became more confident and appreciative of life, particularly of the ‘small things' that they used to take for granted. They became more compassionate for the sufferings of others, and more comfortable with intimacy, so that they had deeper and more satisfying relationships. One of the most common changes was that they developed a more philosophical or spiritual attitude to life. In Tedeschi and Caohoun's words, their suffering led them to a ‘deeper level of awareness.'

Another psychologist, Judith Neal, studied 40 people who went through ‘post-traumatic growth' after life-events such as serious illness, divorce or the loss of a job, as well as near-death experiences. Initially, most of them experienced a ‘dark night of the soul', where their previous values were thrown into question, and life ceased to have any meaning. After this, they went through a phase of spiritual searching, trying to make sense of what had happened to them, and find new values. And finally, once they had found new spiritual principles to live by, they entered a phase of ‘spiritual integration', when they applied these new principles. At this point they found new meaning and purpose in life, together with a gratitude for being alive, and even for having been through so much turmoil. In some ways, it seems, suffering can deepen us.

The German philosopher Friedrich Nietzsche was certainly no stranger to suffering. For most of his life, he suffered from excruciating migraines which left him incapacitated for days, as well as terrible stomach pains. He was forced to retire from his professorship at university at the age of 35 due to his ill-health, and spend the rest of his life in isolation. He never found a wife or girlfriend, was ostracized by his intellectual peers—because of his unconventional ideas—and had very few friends. He was so unsuccessful as an author that he had to pay for his books to be published, and even then, many of them were pulped by the printer. Eventually his writings did begin to filter through to appreciative readers, but by then he was showing signs of mental instability. At the age of 45, he had a complete mental breakdown and spent the last ten years of his life in a catatonic state, living with his mother.

However, Nietszche had remarkable powers of resilience, and always thought that his suffering was beneficial to him. He saw his suffering as ‘the ultimate emancipator of spirit' which was essential for his philosophy, since it ‘forces us philosophers to descend into our nethermost depths...I doubt whether such suffering improves a man; but I know that it makes him deeper.' His experience was that when a person emerges from episodes of illness, isolation or humiliation, he is ‘as though born again, he has a new skin,' with a ‘finer taste for joyfulness.' In the The Prophet, Kahlil Gibran makes a similar point when he writes that, ‘The deeper that sorrow carves into your being, the more joy you can contain.'

This doesn't mean that we should welcome suffering, or purposely seek it out. But when it does appear in our lives, we should be aware that, beneath its negative surface, there is an opportunity for growth and deepening.

S Taylor Ph.D

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 15, 2017 5:38 AM EDT
Post Comment | Permalink
October 13, 2017
Last Option.
Mood:  not sure
Now Playing: Day 2839-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Thanks to Miss Beary kitty for the morning wake up call as she sat at the living room window talking to the birds. She has grown to be such a beautiful Beary kitty~

Today was all about ending a very long week trying to make some sort of sense out of radiology imaging and reports with my specialists. It was also a day of realization of what the next chapter of this journey might hold for me. A last option of sorts. Myself and Eric, once again, had zero expectations. We have been down this same windy road far too many times over the past few years. Today however...was different.

My initial expectation or more like...assumption...was once again being poked and pried in order for my specialists to re-evaluate the largest tumor. But today was different. There was no poking or prying. There were no additional tests that needed to be performed. My team of specialists had already sat down and carefully looked over all of the imaging and reports from the hospital. They did so over the course of the week. Instead, today we did nothing, but sit back and listen. It may not have been what we wanted to hear. One final medical option, which means, one final life changing decision. I can't say that today's news wasn't expected. It had sadly been anticipated.

Once again...another life changing decision must be made.

Since there are no further surgical options and I maxed out the lifetime course of radiation therapy among other oncology treatments. There was only one option given to us today. Given to me as a means to 'possibly' provide a minimum 6 months to a year before facing the inevitable end to my journey. There is only one last option which is a non-FDA experimental course of therapeutic treatment delivered via outpatient injections. The problem with using this experimental drug is that there are no other drugs to counter act a very long list of side effects. In fact, there are so many side effects that Eric's opinion after reading only 1/3 of the list was, "NOWAY." As well, the drug does raise flags for concern due to the drugs initial reaction. During the first 3-4 weeks, the drug will cause you to feel worse, before, possibly helping to starve off and shrink lesions and tumors. All this to possibly help me gain a 'possible' 6 months to a year of life. Quality of life during those 6 months to a year? That's an entirely different blog for another day to share with everyone. Because let's face it. When you come to a point in your life. When you feel as if you are all alone. There is a one million percent certainly in saying...YOU are not alone. Someone else, somewhere else, is walking in the same exact shoes with you. In my case, another non-FDA, experimental treatment, paving the way for other patients who may have to unfortunately take a walk in my rare pair of shoes in the future.

If anything is to come out of a very unique medical journey. Is the ability to share it with others.

So...as I take this weekend to rest, reflect and ponder the last option given to me today by my specialists. I plan on coming to a definite decision by early next week. In the meantime...my team of specialists will be battling, once again, with our insurance company. As they attempt to, once again, have them cover not only a very rare, experimental treatment drug. But another ridiculously, outrageously, overpriced one! The craziest part of all? I am still paying for the other treatments and what our insurance company refused to pay with last years oncology treatments. HA!

At least after a very long day. I got to come home, change clothes, curl up on my bed and be greeted by the most loving, affection, big hearted support group of all...Cuddles kitty and the rest of our fur children. A bitter sweet ending to a very long day.

 


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 15, 2017 4:59 AM EDT
Post Comment | Permalink
October 12, 2017
A Moment Of Weakness.
Mood:  hug me
Now Playing: Day 2838-Next GP Chapter... Turning Lemons Into Lemonade :)

 

Thursday.

A day of rest...time to reflect.

Eric's Thursday...time to reflect on a moment of weakness.

We all have those moments from time to time.

Early this morning, I had my own moment of weakness. Far too much pain, nausea and vomiting had me literally throwing in the towel. Even as far as canceling the appointments scheduled for today and tomorrow with my specialists/surgeons. My moments of weakness are very different from Eric's. When this gal has had enough...I throw it all in and not just the towel. Who could really blame me after everything I've through in over the past 15 months. Those 15 months have been, by far, the most grueling and beyond challenging for me. Physically and emotionally.

5am was my moment of weakness. By 8am, I had already threw in the towel and canceled all of my appointments with my specialists. My feeling was pretty simple at that moment of weakness. "Why bother." I was already told by oncology that there is nothing further they can do after treatments failed time and time again. I have also been told the exact same thing many times over by many other doctors, specialists, surgeons and even the big mayo clinics. All within the past 15 months.

So really...why bother?

By the time I was finally able to get some sleep. I was also able to allow my brain some time to rest and rethink throwing in the towel. A few messages also crossed my path while I was asleep which quickly helped to change my mind. The first two messages were from my very own specialists and another via phone from a very concerned nurse at my other specialists office. One would honestly believe that by now, I have literally used the last of my nine lives via given to me by my fur children. I have become this incredibly lucky individual who has continued defying the odds over and over and over again. Just when I think life is truly over...TADAAAA! I am back up, fighting again and again and again and again! The reality of this...there is going to be a time when I can no longer be this incredibly lucky individual. A woman who was blessed by her feline children, far too many nine lives ago. Eventually, things will catch up with me. This I know.

God places those in our lives for a reason. Sometimes....the reason is due to a moment of weakness. I believe those who reached out to me today did so because they sensed that I was throwing in the towel. And you know what? They were right. What they don't realize is that a moment of weakness. Turned into a moment of strength as their sincerity allowed for me to see the light and bravely dust myself off, again. My fighting spirit was awakened by their sheer act of compassion, kindness and overwhelming sincerity. Tomorrow...I will have my answers when it comes to the next chapter with my health. And I am ready.

This evening while myself and Eric were discussing some important decisions that need to be made so I can continue living the rest of my life as peacefully as possible. I looked up at the television screen and clock on the DVR as those from heaven continue sending their own messages of love and support. My guardian angels from above~

theshando: I had started chemo. Was using a cold cap in hope to not lose my hair. End result was clumps in my hands. I was sick, felt like I was losing myself. Gained people and lost people. Got weak and got strong. Felt ugly and yet more beautiful inside than I had ever felt before. I remember this like it was yesterday, like it was a minute ago. Cancer has so many phases. Shock, denial, acceptance, anger, resentment, rebellion, fear, appreciation, beauty. Remission. Even then, the phases keep coming. Cancer is with you forever. Those who have experienced it know that even after you've kicked it's ass. It still impacts you, in good ways and bad. You still go through go thru the roller coaster of emotions. You still need support and love. And you can still grasp life and live, live, live.


Posted by GastroparesisAwarenessCampaignOrg. at 12:01 AM EDT
Updated: October 13, 2017 1:13 AM EDT
Post Comment | Permalink
October 11, 2017
Turning Lemons Into Sweet, SWEET Lemonade! :)
Mood:  d'oh
Now Playing: Day 2837-Next GP Chapter... Turning Lemons Into Lemonade :)

 

As I sit here and type...trying to make some sort of sense out of a very disappointing day...I am still reminded of all the goals that I have set for myself.

Recent medical news has continued to be virtually impossible to swallow. Myself and Eric have yet to come to terms with anything. Yet, I am not sure if I will ever come to terms. I never did from the get-go. When this entire mess started to quickly surface, close to 2 years ago.What we continue to agree on...are the facts regarding cat scan imaging that failed us. Twice. I remember both surgeons telling me during my last surgery that cat scan imaging did not show anything that was going on internally. A meticulously thought out surgery that went anything, but as planned. Instead, it turned into a complete nightmare. That surgery still haunts my medical records. The surgical reports are downright...damning. It's no wonder that today marked the second specialist/surgeon, in less than 2 days, who responded with what we highly, yet, unfortunately anticipated to hear. Medically, I have come to a point where my case is far too advanced for their expertise. They as well, feel that nothing further can be done. Honestly, I have maxed out most, if not all of my medical avenues. If I could perform my own mercy surgery...this gal would not be typing. But realistically, that is impossible. Not in this day and age...anyways.

With only one more of my specialists lined up to see me later this week. I literally feel my most vulnerable yet. My life, my future, my everything lies in their hands. And THAT is the most damning reality of all. A very disheartening reality. But so is another day dealing with the same constant pain, nausea and more weight loss. The lack of energy is the most upsetting. My biggest mistake today was getting on the scale. All I did was set myself up for one more huge let down. Hospital physicians did mention of placing me back on Marinol. The little magical pill that consists of one active ingredient. The most potent active ingredient found in marijuana, but in pill form. Liquid pill form with a PUNCH! My body got used to the little magical pill when I was taking it for the last time earlier this year. My specialists then made the decision to slowly wean me off the medication. The biggest benefit I received from Marinol was helping to completely eliminate nausea and vomiting. That meant the ability to actually gain weight. For me...5mg, twice a day, did the trick! Now since I am quickly losing weight due to the inability to consume anything without excruciating pain, nausea and vomiting. Giving the ole Marinol another try might not be such a bad idea. Hmmmm....

While waiting for the other shoe to drop later this week. One last specialist that has reviewed all of my most recent radiology imaging and reports. I still have a temporary work permit staring at me. I also have a taping for a major television production still on hold due to recent medical findings. Yet, something else, placed on hold. For how long...who knows. Disappointment can literally eat one alive, if you let it. This I know! For now...I am taking mandatory steps on learning how not to be so hard on myself. It's something that honestly should had been started a very long time ago. I have such high expectations for myself. Bars set far too high for what I can do physically. Call me the biggest Alpha Gal you will ever run across in your entire life! Yep, that's me.

Sometimes...it's not such a good trait to possess.

What is good to possess is that deep FIRE that remains within! That fire inside allowed for me to almost flip our entire house. What is left, isn't much. Just a few repairs with the ceiling and a few outdoor odds and ends. We literally took all of the hidden lemon gems that we came across over the past year and turned them into sweet, SWEET LEMONADE! Even...while being sick. Even...while recovering from every single, last oncology treatment. Even...while taking on more of you-know-what...stress. That folks IS something that I am most definitely proud of! I am proud of myself. I am proud of Eric. I am exceptionally proud to have overcome the odds for many years while doing so...together.

Turning Lemons Into SWEET lemonade~

 


Posted by GastroparesisAwarenessCampaignOrg. at 11:44 PM EDT
Updated: October 12, 2017 2:18 AM EDT
Post Comment | Permalink
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
Post Comment | Permalink
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
Post Comment | Permalink

Newer | Latest | Older