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