Ain't No Grave!

A couple of weeks ago, my daughters and I had a rather terrifying meeting with my oncologist. In our hopes of having him give us the information of his plan in action due to the new PET scan results, we found something very disturbing. He has had me waiting on a clinical trial since October; waiting with no communication other than testing dates and locations from staff. In my attempts to deal with the worsening of pain and other symptoms I was failing at getting acrosss to them that things had changed and something needed to be done. Obviously an ongoing problem between doctor and patient, but it needs to stop. We depend on our medical staff to have our best interests in mind and fighting for us, hoping for the best and always looking for the best treatment options, right?

I have studied diligently and continue to update myself and keep myself up to date, which I feel is very important when you're dealing with a severe chronic or terminal disease. I dig to find out what all those test results mean and what they mean for me. I ask a multitude of questions and take all that information in stride. It is truly amazing the difference in how each of those medical staff will answer your questions. Some are a wealth of info and helpful and some just see you as their very short lived patient that they may never see again and won't offer much. I really feel for people who cannot comprehend this new and transforming medical society and all the different treatments and protocols, very sad. They many times are solely depending on their doctors and nurses to do it all. Some are blessed and that's what happens, but I think I see way too many people on the social media pages asking and even begging for answers that they left that doctors office without. It makes my heart hurt.

In this particular meeting we were blindsided and had no idea about what my doctor felt until he was pushed for a plan to combat the increasing and ever growing tumors that have riddled my body and severely multiplied just since November according to this PET scan report! He doesn't see that there is ANY treatment that is going to work! Even the clinical trial that I don't qualify for because of the unstable condition of brain metastasis that has crept in.

BRAIN METASISIS

Due to an MRI that was part of the pre-qualification protocol for the trial, we learned in November that I had 10 brain tumors with one being large and in dangerous placement in my brain stem. There's no room for that kind of foreign entity there so any growth can cause serious issues. I was immediately put on hold for the trial and referred to radiation therapy.

December was full of simulations, tests and finally a one time high dose of pin point lasers delivering radiation to the exact placement of the tumors. And then there's those lovely side effects.. yuck, it was unpleasant though necessary, then the waiting.. of course.

I was totally unprepared for the results of the standard 30 day MRI: too quickly 7-8 more tumors had arrived (most likely already there but not large enough to be seen at the time of testing) and these received none of the radiation that had been lasered in. A
new plan had to be formulated, obviously the pin point technique was not going to stay ahead of the spreading going on. This calls for, you guessed it! More testing, more simulations, more uncomfortabl mask molds and Whole Brain Radiation...

In the meantime, these technical plans take time to formulate, it's hurry up and wait for weeks, but this team realizes that I'm dealing with so much more than just brain mets and order the colorful PET in question here. Seeing these results and then hearing of my new symptoms of numbness and tingling across my face, my lips, tongue, roof of mouth and down my right arm to my fingers, severe lung pain, muscle weakness and joint pain they expedite the treatment and get me started! Truly looking out for my best interest- thank you doc!

I'M NOT DYING!

In this meeting then with the original oncologist he is completely disconnected with what is going on. As my daughters push him for answers he raises his voice and lets them know that this is the circle of life, just how it is sometimes and there's always palliative care for me! These words are like splinters of hopelessness to me and completely unknown and foreign to these young women. Once we explained what this actually means I could see the realization of horror across their faces.. no one should ever be spoken to in that way and hear of a possible fate for their mom like that! Bad form doc.. I hope this to be an isolated case and not the norm for patients. I understand the beauty in palliative care when its time, but IT'S NOT MY TIME and I'M NOT DYING!! (and if I were, don't tell my children in that tone, please.)

Does it go without saying that we walked out of that meeting without an oncologist.. and I quickly declared to my girls that I was NOT DYING!

Heading to the parking deck I checked my phone and found a notification for YouTube.com and was overjoyed to see the very timely post from my church! Someone had my back, someone was listening and in tune.. that person had just in that short time posted a song from our anointed worship leaders that I needed to hear! I needed to declare and push way down in my spirit to take the place of those words of death and hopelessness! As soon as I was situated in my car I plugged my phone into my stereo, found the YouTube post and turned it wide open, played it over and over all the way home singing to the top of my HEALED LUNGS!! (It's HIS Breath, He breathed into us.. HE chooses when that comes to an end! No one else has that power, but we can foolishly give it over to them by becoming into agreement with their thoughts.) THEY don't KNOW MY GOD!!

 I HOPE YOU ENJOY!! 

AIN'T NO GRAVE!!


LOVE, JOY AND PEACE, In HIM!

JOANN

THE JOURNEY part II

        

          The Road To Here

  If you haven't read part I to this post you can start at the beginning by scrolling down to the next article since I'm unable to remember the link set up-sorry. Then meet us right back here to get caught up with everyone else to just where things are in my world of  Cancer land.

In the midst of this cancer storm I am standing, am believing for complete healing from Jesus Christ, the healer and patiently awaiting the manifestation of that total divine miracle healing! I'm excited, no ecstatic about that! I know it's on its way, I have my hand up and in His perfect timing I believe I will see it. (details in the previous post as to why I'm so confident about that)

Here's the thing though, this could be the most difficult time for me to publicly make this stand. For me spiritually, I believe it's the most crucial time! It didn't just happen or come to me in story form and I jotted down my thoughts, no. This was planted deep within me a couple years ago by my Heavenly Father, through grace testing me, producing a hunger for truth, feeding me, teaching me and finally when it was wrapped up as truth and flowing through my very blood veins and interwoven into every cell of my body, I began to say it as fact. No more "ifs" or "hopes," no it is fact and truth in my life. 

I remember the first few times I spoke those words out loud to friends. It didn't quite sound like I thought it would and definitely 
wasn't heard in the way I had hoped. No one got excited or made much of it at all. But of course with loving support there was always a quiet agreement rendered. 
I get it! It's not an easy road to walk nor a very comfortable place to stand. When you're being a little on the radical side of life when has it ever been though? For every missionary who ever said they were going to some remote country to preach the gospel, I imagine they met with that similar quite support. What can someone really say back to, "God said,?"

Well, God did say, so many times, through His infallible word, through His leaders of today and to me, His child who has been bought at a very high price, with that precious blood that His faithful son shed for us on his journey to the cross, being brutally beaten for our transgressions and then hanging there for what must have seemed an eternity. Being naked in front of his family and friends, being ridiculed and mocked..I could go on..but I won't today, but you can read it for yourself in 
Matthew 27:27 of the Holy Bible. 

 I have spent most of my life trying not to envision the events of that day because when you really think of what he went through for us it's so hard to comprehend. But his great love for us won out over any doubts He may have had. That's where I had to get. I had to know that this is Gods will, I had to know what I was accomplishing and I had to be at a place where nothing else mattered and my eyes were set on Him and His great plan for my life. 


Honestly, I thought this post was going to be more about the medical side of what's going on right now, but that isn't what was on His mind this morning. Not yet anyway.. today is day #5 of my radiation treatments and I want to share some of that info because so many are going through this and you know, not one single person is prepared for that. I mean, how could you be? I will be back and explain what, why, and where soon, I hope you'll join me. Thanks for reading and I'd love to hear your thoughts and comments. 

Hugs,
Joann