Saturday, February 11, 2017

And The Beat Goes On...

Pss. 43:5 “Why art thou cast down, O my soul? and why art thou disquieted within me? hope in God: for I shall yet praise him, who is the health of my countenance, and my God.”

And The Beat Goes On…

Every day I wake up and am grateful for a new day and a new way to fight the cancer. My day begins with prayer, a reading of my Bible Gateway emails, and reflection on what God means to my life. It’s ironic how each new day brings emails, web page landings right in my hand that pertain exactly to me and what I’m going through.

I have my good days and those days are the ones I want to keep fresh in my mind while my bad days are good days where I feel negative people or events tried to wander into the spatial plane of my existence.

In two weeks the positive outweighs the negative by far. One lady friend basically attacked me telling me how wrong I was in making the decision not to do chemo because she’s lost people and cancer is ugly! I wish people would respect me enough to READ my words before berating me with THEIR experience and THEIR opinion as if I didn’t have enough of my own experience to make this judgment call on my own. 

I’ve lost people to cancer too, my husband has lost people to cancer also and I know it is an ugly disease that millions are fighting, struggling, winning and also losing. I KNOW I get it! I am not an uneducated child throwing my hands in the air and stomping in temper tantrum fashion, I get it, CANCER KILLS! In a span of decades, I would say I’ve lost well over 10 people in my family alone to the disease and there could be more that I haven’t heard of.

My day consist of wanting to stay alive! I don’t wake and turn to the nasty habit of eating what I want, drinking what I want, no, I think of my body as a broken machine and it’s in the shop for repair. When your car needs repairs and the mechanic says, “Well ma’am, you need a whole new engine. That’s gonna cost you about five grand.” You think the repairs are not worth it and you just go and buy a new car. Well, I can’t just go and trade my old body in and get a new one. No, I need to repair what I was given.

To ME, chemo is like putting a gas treatment in the gas tank and expecting it to run because you treated it with the best juice on the market. You didn’t weigh your options. The mechanic said you needed this gas treatment and that your car would run good for a little while, so you took his word for it even though he just told you that you needed an entire engine!

Sometimes people don’t trust themselves because we’re supposed to trust the mechanic or doctor who has been trained in their field of expertise. How many of you have taken your car in and when told that you needed an entire engine, decided on a second opinion and were told that it was fixable for a much cheaper price. You took their word because they HAVE to be right, right? 

I’m all about trust. Since my abusive childhood (read my entire blog) I’ve had many years of being leery and mistrusting people and having to go with my God given instinct. Something feels wrong about this big C diagnosis, I do not trust the rush, rush, hasty decisions that are making me feel uneasy.

One day the diagnosis, the very next week the oncologist, and that visit was all about starting chemo two days later. Wow, what a week. My mind didn’t even have time to let the diagnosis set in and they were already making plans for a port to be installed and begin chemo treatments, how I’d lose my hair and be sick but we’ll give you pills for the sickness. When I said, “WHOA, hold on there, Silver.” The oncologist told the initial BC doctor from the first-week diagnosis that I was not committing. What does that even mean?

When the navigator lady called on Monday (the 6th) she asked me where I was leaning and what were my thoughts. I told her I was considering the PET scan but I was working on getting my body, mind, and spirit in sync with all of this information. I need my body READY if it is ABSOLUTELY necessary to get chemo or any other radiation (PET SCAN). I’m still not getting clear answers on that one. One day my cancer is ‘not aggressive’ the next ‘mildly aggressive’, could you be more specific? I told her she could call me call Friday. 

Friday came, yesterday I woke feeling great as usual, happy to be alive one more day and praising the One who made it all possible. I took a shower, woke Adam and asked if he’d drive me to the store to pick up money (thank you, God) and to get some more veggies for my new way of living. I came home happy as a penguin sliding on the ice. I was gearing up for my walk when the phone rang, must be navigator lady, I thought. 

List of characters: Onc. – oncologist, navigator- works for Onc. and is supposed to help and guide me, BC- Breast Cancer specialist doctor who gave me the news of BC. Joni- That’d be me, the one in the background. 

“Hello?”
“Hi, this is the ‘BC Doctor’s office, the doctor would like to schedule you for an appointment.”
“For what?” I was totally broadsided on this one, I was expecting navigator lady from the oncologist office. 
“The oncologist informed BC doctor that you were not willing to commit.”
“To what?” I asked. 
“To your chemotherapy treatments.” Silence over the phone as she read the note Onc. had sent to BC doctor. “I’m sorry, I was just reading the note that Onc. sent to BC.”
“I thought navigator lady was going to call me today. I told her I needed time, and we were working toward a solution. I need a moment,” silence as I had to wrap my brain around what was going on, “I have to call you back.”

I hung up the phone feeling anger, anxiety, and perplexity along with a tinge of betrayal. I thought navigator lady was working with me, but obviously, after our call on Monday, she went and told Onc. that, “Nope, Joni isn’t falling for our scam we’re trying to pull on her.”

I was actually ready to tell navigator lady to set me up for the PET scan, but apparently, we’re all playing a different game here. I could not call navigator lady right then because my blood was boiling, my temperature rising and my heart went into overtime. “Well, there goes my walk.” I couldn’t even wrap my mind around taking my little walk.

This is what I’m up against. I’m being as open and honest in conveying my feelings but they are NOT hearing me and only have tunnel vision for what THEY want done. Why can’t we work together for a positive outcome here, why is it your way or no way at all? How come when I ask about vitamin C treatments they quickly, hastily brush off what I said and say, “We don’t do that here!” I’ll tell you why they’re realizing I’m doing my homework on this disease. I’m educating myself in treatments that are out there. I’m asking them to embrace something that is foreign to them and that is moving forward in the steps that it will take to eradicate cancer.

“We don’t do that here.” That means to me, we just do chemo and if you don’t agree with us on chemo, we have to send you back to the BC doctor and let her time and money be wasted on you. Our time IS money, see ya! 

That is exactly the way I’m feeling I’m being treated. I will call the BC doctor on Monday and set up an appointment and hear what she has to say, as for navigator lady, if she calls Monday I’ll think of something creative to say, you all know me.  *wink*

Pss. 107:20 “He sent his word, and healed them, and delivered them from their destructions.”

1 comment:

benning said...

"Well, you can't get there from here." Hang in there, Toots! <3