Mood:
brightNow Playing: Day 2858-Next GP Chapter... Turning Lemons Into Lemonade :)
Ahhhh...the very first signs of fall here in the country...
Bahhhh...the very first signs of a far too early wake up call here in the country...
Talking about one mix-up of a day!
We arrived 10 minutes early at the hospital, signed in with registration and was taken back to the same-day surgical area. What we weren't ready for was a HUGE mix-up, more so, a phone call and voicemail message that I never received yesterday. A message from my oncologist's assistance in order to let us know that my blood work came back with a few concerns that need to be addressed first before proceeding with my port. I honestly never received the phone call nor voicemail. That is because they left the voicemail on Eric's phone number. His prior phone number before having it changed after moving to Indiana. Oh yes...someone got the message...it just wasn't me.
I am still dealing with immunity issues, a compromised immune system. What my doctors will not do is any type of surgical procedure when signs of infection surface. It took my specialists almost a month to finally be able to proceed ahead with the last surgical procedure due to my inability to regulate a safe body temperature. That was also due to problems with my immune system, in which, a pump that was going to be able to deliver important hormones that my body can no longer make on it's own, was permanently canceled. Instead, we find out four months later, after my last rescan why I am having one complication after another. Internally, things rapidly progressing is not only concerning, but if I allow it...could be beyond depressing. Days like today, most certainly put life into perspective.
The gift of life, should be respected.
So...instead of being mentally prepared for my port procedure. We were whisked away to the infusion center for another treatment to help boost my immune system. This isn't the first nor do I expect it to be the last. For anyone who has endured infusion treatments. You can completely respect the time involved which starts with first getting your vitals taken, then off to find your assigned infusion chair. Time is truly of the essence with having any type of infusion due to time sensitive, delivered medication from the hospital pharmacist. The person responsible for making sure that the medication is sent up to the infusion staff after the patient has been registered and waiting in their assigned infusion chair. The infusion center that we typically go to inside the hospital reminds me of what one would see up in heaven. Bright white walls, crystal clear and very bright overhead lighting, soft white infusion chair sheets and big fluffy white blankets and pillows to keep you warm and comfy during your infusion treatment. All of the infusion center staff wear white hospital uniforms with white medical clogs. Everything...is literally the whitest shade of white humanly possible!
I believe that those who decide upon a career, taking care of patients with serious medical, end of life conditions, have some of the biggest hearts in the medical profession. We have yet to ever see a staff member inside the infusion treatment center walk around with a frown on their face. Even right down to the volunteer staff who come around making sure you are comfortable during your infusion, along with loved ones that sit along side the patient. Offering anything from magazines, beverages, snacks and even a mini size version of chess to help bide time while waiting for the infusion treatment to end. Every single infusion center staff member is beyond amazing! Angelic...that's a good word to describe their level of compassion and care to each and every patient.
Of course, there are the stories that are pretty hard not to overhear since all infusion patients chairs are out in the open. This as we were told makes it possible in order to help patients who might encounter a reaction to their treatment medication. Within the very first minute of my nurse helping me to get comfortable in my chair. A young woman in her mid 20's started having one of those serious reactions. Her mom gently held her hand while the nurse helped talk her through the reaction she was having from her treatment. Watching her face go from a normal skin tone color, to a very pale bluish-gray color, was quite scary. Of course, since she could see me. I instantly put on my warrior face! I had to set an example, more so, a calmness for her. Before the nurse began my treatment. I asked Eric to step out to the hallway. He doesn't do well with needles and the young ladies response to her treatment already had him frightfully nervous. Every single patient with an assigned chair has a story. The gentleman who sat next to us enduring his weekly infusion who sits patiently waiting for his medication to be delivered by the hospital pharmacy. One brave soul who endures weekly treatments to help boost his compromised immune system due to a kidney transplant, number two, that his body sadly rejected last year during Christmas. Another couple, an elderly gentleman who is battling stage 4 lung cancer. A supportive hand from his wife who patiently sat by his side. Yet, tells his assigned infusion center nurse that he feels a bit better and would rather not continue his final treatments due to time spent away from his family. Infusions that take between 3-4 hours which to him, equals time away from his adult children and grandchildren. Then there are the strongest of souls who are bravely enduring one final treatment option in hopes of biding just a bit more time. Experimental chemotherapy drugs that literally cost $15,000+ per infusion. This is actually around the normal cost of most treatment drugs. This is also why the drug manufacturers must have your verbal consent on the phone before they will ship the drug to the hospital pharmacy. I was told that same information last week, by the pharmaceutical company who needed my permission before proceeding with my own last option experimental chemotherapy drug treatment. Yet...my decision to not proceed ahead with one final option was not as brave as those souls who were seated in other infusion chairs. For those patients and those who sit in a chair next to the patient. Those who are there to support their family member, loved one and friend. My heart and deepest respect go out to each and every one of you. It takes a very brave and courageous human being to hold the hand of those who fight to live to see another day. Those same patients who go through the unimaginable, literally, the unthinkable while still being able to hold a smile on their face.
There really are no words to describe what it is like to sit among those who are the most bravest souls around...looking for hope inside a place where angels really do exist.
I am forever humbled to be around those who are forever blessed.
special
cheeky
BOO!!
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. 
Chic!
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. 
This evening was just meant to be. Me and my honey having the most fun celebrating a SPOOKTACTULAR HALLOWEEN!
rushed
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
WOO~HOO!
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
happy
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! 
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! 
hug me
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.
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! 
sad
d'oh
... that's how I view this blog which has over 2,800+ entries and still going strong! 
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. 
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. 
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. 
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. 
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. 