Thought I would go ahead and share the entire story for the
day. First, Madison was supposed to come along today and when I woke her up she
told me she didn’t want to go. Note last night I had to spend an hour on how
she could not hang clothes. That is was impossible and finally after an hour of
wasted time, I had 8 beautifully hung shirts. So, today, the question “why?”
caused more drama than I would ever expect. Though I should have expected it.
After a few suggestions of why she may not be up to going, lazy, tired, scared
of seeing it, I give up, and its now time to go. So instead of coming with us,
she now has a large to do list in conjunction with a one page essay on “why you
won’t go to the doctor with mom.” We will come back to this later. It’s awesome.
So we check in, Skip is a walking no coffee zombie and I
don’t even take the stairs. Our first greeting was that of a large bill for the
new year! I was expecting way worse, but for now, there is a plan to assist us,
and if it goes through, we will only pay around 20% of our out of pocket max!
Until all of that is worked out and hopefully approved, our little AMEX was put
to work and HOPE funds are about to be a HUGE blessing!
We go back and I’m begging for the awesome port girl, Sarah.
After realizing that would be impossible to get her we decided to draw from my
arm so they would HAVE to only flush!! It was brilliant! So we did that, hurt
worse than normal –of course- and then Dr. May comes in to chat a while. Talked
about vacation and all the Christmas fun and how my numbers are all still low,
but expected and not horrible. YEAH! We figured out my appointments through
APRIL and then they were good to go.
Everything was as is, except before that, I got to hold my
waiver a little longer than normal and I see this little box checked with a
line out to the side. Box-complications_____________ and I thought ew, don’t
check that, that’s a BAD sign. I know, signs, blah blah blah, no for real, I
cant stop thinking about that stupid box now! Lol. She did everything as normal
and it stung again. Two weeks ago it did as well but this wasn’t as bad. IS it
clear, always my question, yes, all looks good and they go to screw on the
chemo to put it in and the needle shifts/falls over. She removes it and said
there was some kind of resistance. They began the entire process al over again
and I hear her saying something is not right, its not drawing, etc. At this
point every muscle in my body is tense and Im like for the love of GOD and
EVERYTHING that is HOLY GET IT OUT!! Get it out, get it out, get it out. Im not
kidding. It came out. I see the blood in the clear beautiful fluid and DRIP! No
kidding spinal fluid is running down my shirt. I about peed in my pants and
passed out all at once. Thankfully she quickly explained it was from the
needle. Sigh.
Im shaking, terrified of what is happening. She went to call
Dr. Tomaras and quite quickly he had me do an Xray to be sure the catherter in
my brain had not separated from the actual resiviour. Lets think about the
things that go through your head when you hear that… NOTHING good. By this
point Im shaking, I haven’t even had my chest port access, and I am praying and
requesting prayer like crazy. I asked for an Ativan but it never worked. My
legs were like jello. My neurosurgeon told us we did NOT have to lay for two
hours even thought everything was off. See, they removed 10 ccs of fluid but
normally return all 10! (5 Topotecan and 5 of the spinal fluid to flush) So
now, levels and pressure becomes off and that is freaking me out.
We get downstairs and my first instinct is STAT. Yes, I did,
I grabbed a pen and jotted STAT at the top. I was NOT waiting an entire 24
hours to get results. I may go into cardiac arrest at this point. Lol. I am NOT
a good port owner. Head OR chest! So we waited and FINALLY go back. Xrays are
typical and then in another brilliant moment I think and ask for a copy of the
films. BUAHAHA. Yes, I did. So I left there within a couple of minutes, found a
nice bright window and immediately saw the tube was still in the hole. Sweet. I
did see a couple of white spots that I wondered if it was clogged, but when
they called later, that apparently was not an issue.
I was told this can happen and some people deal with it
often. Um, we are going to have to pray that does NOT happen!! Said that my
level could’ve been off and asked if I scuba dived on vacation. That made me
laugh. Those who know me know Im not a huge fan of getting into the ocean much
less being surrounded by water and fish that can eat me. Nope, no diving. A
hole bunch of NOTHING. And seafood.
Finally she decided we would meet Friday to try again. So my
prayer is for it to work with no complications and continue to kill cancer
cells with no side effects. We DID send it off for cytology and will no
typically in two days the results. I am now SUPER eager to see what it says. It
also sounded like she may send it off more often now that we are skipping
weeks. Every other week through April 11, is phase three, then its once a month
from there.
This was a big scare for me. I know there is a big chance of
a downward spiral and I do expect that day to come. We have seen many miracles
and I hope and pray our miracle lasts for a very long time. The thought of what
if there is blockage and its begun definitely haunted me today but I was
luckily quite distracted. Because when I got home and checked the checklist I
had made for my awesome daughter, the essay part was not exactly done but
checked.
The title was “Why I didn’t want to go to the doctor with my
mom” and in the very middle of the page was a capital I. She says, I wrote a
one page essay. One page is written on. Part of me wants to laugh and the other
part of me is thinking ways of how to address this. I left her there for a
while to write it or come tell me why, the entire problem to begin with, and
returned after an hour or so. Something is written, but Im not allowed to see
it and when I reach for her computer Im told I wont be able to find it anyway
because its hidden. I own a Mac love. I found it, and she basically stuck it at
the bottom of a story she was writing. Wouldn’t let me see it, deleted it, and
I took her computer away. Because sadly, this now wasn’t because I wanted my
one word simple answer it was because she could not be honest and HID something
on her computer and then DELETED things from it!!! Still haven’t yelled
or raised my voice and praying the entire time, And so I had to leave again. Periods of Skip going in happened and this entire ordeal lasted for over 3.5 hours. Entire day shot.
Finally
the reason comes out after many many tears, it was what I asked THREE times, once at the VERY beginning at 9:05 AM and would’ve
been completely okay with that. But instead we had to listen to how she didn’t want
to say it out loud because she thought it was selfish and a stupid reason. She was scared.
Simple as that. Skip and I later confirmed the report and I'll leave it at that.
Parents now TWO, kid ZERO.
So now, its dark, weve spent precious time reasoning with this
ridiculousness (trust me we made that very clear) and its now time for dinner, grocery shopping and some form of
family time. We chose memory and I won. Because I always win. I can't remember ANYTHING from my childhood or what happened last week, but I can take anyone down in a game of memory. LOL.
So that is my stinky day and though a lot of bad happened,
there is always good. Don't get me wrong, her reason was in no way selfish or stupid and I wouldve made arrangements for her to stay home had she just told me so. But that nasty enemy got in and skewed everything. Good solid prayers tonight for her to be confident in herself and for us all to be honest with one another. These meltdowns need to go as well as the stupid enemy who tries to bully his way into this family because there IS so much good. In Jesus name, devil you and your patrons are not wanted and are not allowed in or near my family.
I did get to play Equestria Girls with Alana, I
cooked a YUM dinner for all and we ate together, I see the love of all my
doctors who work so hard to help us, my prayer warriors will drop anything and
go pray. The love shown daily is great and in the midst of long, patient sit
downs with our kids, its worth it. Because in the end, they will know their
parents cared, loved them and hopefully instilled some good qualities to pass
onto theirs. Good day. I need mega rest now!
Good night!
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