Sunday, May 13, 2018

Don't Stop Me Now

Hello Darlings...

It's been a while...and so much has happened.

It's time for some real talk....serious talk...scary talk...

It's not gonna be pretty...

I need you to be strong for me...and maybe go take a shot of whiskey or pour a strong cup of coffee because what's about to go down here isn't easy for me to say and won't be easy for many of you to read.

There will be some bad language used here...

Ready?

Here goes...

Deep breath...

El Diablo is still with me.

yes

the worst has happened

my cancer is not truly in remission.

My damn Uterine Pappilary Serous Carcinoma is still hanging around.

F'ing El Diablo...

Damn...

damn
damn
damn
damn

I still have active cancer in me...

Thankfully my wonderful docs are calling this more of a progression of my disease rather than a recurrence.

Because a recurrence would be very very bad.

Like "make plans for end of life" bad.

But this is just El Diablo still hanging out trying to be a menace instead of me being classified as fully in NED (No Evidence of Disease) state and El Diablo returning.

Apparently when I had my scans in January and got so excited because Dr. Angel was so pleased we thought I was in the clear it was a bit premature.

El Diablo had other ideas.

El Diablo decided not to fully leave.

El Diablo decided to hide away in my pelvic lymph glands and hang out for a bit longer.

And lest you think Dr. Angel was wrong about anything he fully explained to me that it was a very very real possibility that my disease was still with me but at that time things looked very positive.

Because all it takes is for one cancer cell to remain and...

well...

bam

and

damn

One of the lymph glands was a bit enlarged in January but it was more of a "let's watch this" enlarged vs a "let's worry about this" enlarged.

So a few rogue cancer cells remained and now El Diablo is trying to stir up trouble for me, Dr. Rockstar, Dr. SweetMeds and Dr Angel.

Damn

But I have a few things on my side:

I'm generally healthy (other than a recently fused spine and cancer)
I have badass doctors
I have a will and determination that will not be matched.
I have so many reasons to live.
I have so many prayer warriors who will pray for me
I have so many friends who will care for me.

So now I really have to fight.

Basically I am looking at last year with the chemo and radiation as being BOOT CAMP.

AND NOW WE GO TO WAR

Yes..

full on war.

Because I really don't have time for this shit.

I have things to do.

Somewhere out there is a man I am supposed to love and he is supposed to love me.

I have kids that need a mama even though they are adults. They need to have me guide and love them and I need more time with them. They are my happiest of happies and I need more years with them.

I have shows to costume and students to cheer and love on.

I have so much left here to do and say.

I think I might have a book in me...

I have places to travel (Florence in 2020 is GONNA HAPPEN)

I have meals to make...

I have so many things to learn, experience and try...

I have things to teach my doctors about how to cure my shitty cancer and I get to make them even more badass because they are gonna be even more expert in my cancer and they are gonna be known as doctors who have successfully vanquished a really badass tough extra extra extra case of UPSC.

I found out that El Diablo was still stirring up trouble during my hospital stay over Easter.

In fact the grand news was delivered to me by a teary-eyed resident on Good Friday (Dr. Rockstar was out of town and Dr. Angel was at his other office).

When I went to the hospital it was because the pain was so horrific.

But what I hadn't shared with anyone but my closest friends and family was that at my checkup with Dr. Rockstar (in the midst of the storm that was my torn disk) my CA125 level went from 13 in January to 43.

Damn
Damn
Damn
Damn
Damn

so we knew something was up.

So my "routine" PET scan was moved up a few weeks.

But part of the reason I went into the hospital was also because I knew that unless I was admitted and given some pretty good monitoring, pain meds and mild sedation that there was no way I could get into the PET imaging machine.

So the first test I was given once my pain was starting to be managed was the PET.

I don't remember much (thank you sedation) but I do know I hurt and cried and prayed.

And the next morning it wasn't showing cancer in my hip so we had a little party in Jones 326 (my room) but then the resident came in that afternoon when TwilerGirl and I were happily thinking I was in the clear.

And she told me the news...

Damn...

F you El Diablo

All I wanted to do was cry my eyes out and scream...

thankfully TwilerGirl let me do it and we called AngelAmy and all had a good cry.

But then it was time to solve the short term problem of what the hell was causing me pain so I didn't have too much time to dwell on it.

I let my #teamunicorn know what was going on and my #teamAngel (my peeps at radiation) knew the bad stuff was back and HeavenlyHeather brought in Trixie the Magical Unicorn Balloon and I knew that my mascot was going to be a unicorn and like a unicorn I am a mystical creature. HeavenlyHeather gave me the perfect gift---she gave me a concept I can create my battle plan around.

I have often joked that I am a magical unicorn.

I've even told Dr. Angel that I am (so did KuteKaren1 when she yelled at him to fix me...thankfully he followed her order and is trying to fix me) and his team and I joke I am a unicorn.

Even Dr. Spine (my neurosurgeon) has been told I am a magical unicorn....I told him when he talked to Dr. Angel to get clearance on my surgery to tell Dr. Angel that he was gonna fix his magical unicorn.

I've told the nurses I am a magical unicorn....and everyone else at Memorial Hermann that will listen to me...

I believe in unicorns...they are real...

and I believe in me....I can do this...

so #TeamUnicorn was born and I am now ready to take this fight to the next level.

When Dr. Rockstar and Dr. Angel came to see me in the hospital after Easter Sunday they both acknowledged this won't be easy but we can do it.

Dr. Rockstar said she, and Dr. SweetMeds and Dr. Angel were gonna work on it and figure out how to vanquish El Diablo.  She said Dr. Angel and I were "peas and carrots" so she would not make any moves without his approval.

(He's the carrots----they are square so they are sturdy..they stay in place and you can easily get them and they are bright and they are full of good things. I am the peas....they roll around on the plate and you can't get them easily and they fall off your fork and it's harder to eat the peas...so yeah, we are peas and carrots...I'm gonna make t-shirts...)

Dr Angel was amused by my unicorn balloon and the unicorns in the room and I reminded him that I was his magical unicorn and his ONE JOB was to fix me. (Ok he can fix the other humans too but because I am so extra and so me he needs to make me the #1 priority in his life right behind eating, sleeping and breathing...

I told Dr. Rockstart that I'm her magical unicorn and I am gonna make her the most famous gynecological badass oncology surgeon in the world because I know she is going to spectacularly fix me. I told her she needs to get me to Florence.

And to my son's graduation in 2 years...because by damn who the hell does not want to sit in Kyle Field with 90 degree temperatures in May? (the engineering school has graduation in Kyle Field in May).

I told her that I am gonna come through this so amazingly that she will be amazed.

So once I was released from the hospital and surgery was scheduled my doctors got busy figuring out what to do about El Diablo and Dr. Spine got busy fixing my shredded disk.

(BTW Dr. Spine is pretty amazing....hit me up if you have spine trouble...he and his team are the bomb....Mischer Neuroscience Center at Memorial Hermann is top notch and only has the most badass of the badasses as part of their fancy collection of doctors...Dr. Angel is one too)

I had surgery April 20 and according to Dr. Spine I managed to spectacularly shred my disk and tear the little band of whatever that holds it in place (he was impressed by that). Basically my spine was acting like a mortar and pestle and was very unstable so he put in some rods and screws and used some witchcraft and fairy dust and fixed my spine. Thankfully the rest of my spine is good, strong and stable. He said my disk shreds were on the nerve and that is why I was in so much pain. He was pretty impressed that I wasn't in worse shape and then I reminded him I was a magical unicorn.

We still don't know how I did it but honestly I believe it happened as a way for us to find out El Diablo had just been hiding in a closet and was out and about playing in my body again.

So I gained a month which is important since just 2 months before I looked pretty amazingly free of the damn cancer.

As for spine surgery---listen to me with all your might:

DO NOT EVER DO WHATEVER IT IS THAT MIGHT MAKE YOU NEED TO HAVE SPINAL SURGERY

I wish I could tell you what it is that can make that happen but we still don't know what I did to shred my disk up so it's all a mystery. So take care of your spine...listen to your body.

I have never ever hurt so much in my life. I thought the nerve pain was bad but waking up post surgery was the worst pain I have ever experienced.

I cried so hard it made my nurse get teary-eyed....

And I finally relented to have morphine as long as it was not on a PCA pump.

So that, and hydrocodone, got me through the pain.

I had all the big pain guns going...and yes I am fully free of them and have not needed anything more than a few Tylenol in the last week so there is no chance I'm gonna turn into an opioid addict on top of everything else.

Once I was stabilized in the PACU they moved me to my room.

Woah...

If you are a Mischer Neuroscience patient you get the 4 star treatment (maybe 5 star as far as hospitals go). You get the fancy room...and they have their own fancy OR's....

fancy

we fancy here....

fancy cabinets in the room, fancy bathroom set up for a spinal surgery patient...

and...

fancy nurses...

I begged him to let me go to the 3rd floor because my nurses are so incredible there...

I shouldn't have worried...

my nurses for fancy hotel hospital room were AMAZING and INCREDIBLE and LOVELY...

Oh my sweet JoyfulJoy was truly a gift from God...she took such awesome care of me that first night! And then I had Rani and then I had the magic that is RahRahRah....and sweet Keasha....I swear they were not only kind but truly beautiful...and Nancy and Grace were incredible too....

(NOTE: THERE IS NO SUCH THING AS A BAD NURSE AT MEM HERMANN....THEY ARE ALL LOVELY FABULOUS AMAZING GORGEOUS STUPENDOUS KIND GIVING LOVING HUMANS)

Those ladies were so wonderful...I don't know how I got so lucky.

So I spent 4.5 days in the hospital and was in pain but so grateful that the horrific nerve pain was gone.

So with the help of my #TeamUnicorn I got through these last 3 weeks and I had lots of yummy meals, sweet friends going to the grocery store for me, friends coming to visit and more precious unicorn gifts and flowers than I deserve (but I love them all).

I saw my docs this week...Dr. Rockstar and Dr SweetMeds explained the witchcraft they plan to do to me and Dr. Angel gave me hugs and reassurance and a vote of confidence in the planned protocol.

I've been warned that this horrific cancer might be like a chronic disease with me.

I might have too keep fighting non stop for a long long time.

So Monday I am going to start chemo again.

yup...more chemo

This time it's a new combo of drugs and thankfully it won't make me lose my hair.

I have to have it every other week....and currently I am scheduled through October.

it will likely go on longer than that so PLEASE DON'T ASK ME WHEN MY TREATMENTS WILL BE DONE.  If you ask me then I will tell you to read this blog again as an answer...in fact, let's just not ask questions, shall we? The worst thing you can do to a cancer patient is to ask them a lot of questions about their treatment...let them share if they want...

This is a marathon people...a war...not just a battle...

I'm ready...

#TeamUnicorn is ready on the battlefield too...

We got this...

and my daughter is home so she and Aunt Jane are going to take very good care of me....and TwilerGirl is on chemo duty once again so she is ready to help me with hydration (this chemo requires I drink a lot of water) and thankfully does not have to wrestle cold caps onto my head.

All my peeps in the cancer center are ready for me to come back and spread some more glitter around (but hopefully no spilled chemo drugs)

I'm gonna handle this like the magical unicorn I am...

because I got things to do people....

many many things to do....

and being at the mercy of my crappy cancer is not one of the things I want to do right now...

I have waaaaaaay better uses of my time than fighting cancer and I am pretty sure Dr. Rockstar, Dr. SweetMeds and Dr. Angel are gonna kick the shit out of El Diablo this time...

So I am sorry that I have kept this from most of you....it's not something I wanted to share until I was ready...and until I had a plan...until my children, family, students and those closest to me knew...and until I knew if this was an endgame or not...(pssst: it's not....)

I feel great other than the after effects of my spinal surgery and I am ready to take what they are going to throw at me.

So every other week I am gonna have poison put in my veins and then the rest of the damn time I am gonna live my life and use the time that God has given me.

You see He's not ready for me yet...He's leaving me here to do good works in His name and to be a badass magical unicorn.

He's leaving me here to show the power of faith and prayer...

He's leaving me here to demonstrate love...and hopefully fall in love...

He's leaving me here to mother my children....and to love my students....

He's leaving me here because GOTT needs a work wife (I am pretty sure he has been miserable without me)

He's leaving me here because I'm gonna teach my doctors how to beat this horrible disease...

He's leaving me here to drive Dr. Angel crazy....Dr. Rockstar is not thrown by my antics...she has 5 year old twins (nothing can throw a mom of twins---they are unflappable)...he on the other hand is completely baffled by the storm of energy that is me and I told him he needs me around to keep his life exciting...he doesn't have 5 year old twins so he needs me to keep things hoppin....

He's leaving me here so Dr. Rockstar can say "yes, you can cure Stage 4 UPSC" to other docs...

He's leaving me here so Dr. SweetMeds can know what protocols beat the crap out of UPSC

He's leaving me here so Dr. Angel can teach other docs how to make UPSC get the hell out of a patient...

He's leaving me here so that other Stage 4 cancer patients can have hope....

He's leaving me here so I can be an advocate for cold capping (I still plan to spread the word on it)

He's leaving me here so I can help my friend Grace spread the word about HPV prevention (via vaccine) to prevent future cancer....

He's leaving me here so I can meet Glennon Doyle and Oprah because they are my gurus...

He's leaving me here so I can love my kitties....

He's leaving me here so I can show others how to fight...and how to accept help.

Please don't tell me I am inspiring...or a source of strength...or anything like that....I am not doing anything that any of the rest of you wouldn't do if you were in my shoes.

I have proven I am strong and badass...so El Diablo is just gonna have to stand down.

I won't be stopped...

I have too much to do....

So El Diablo won't stop me now...

there is more ahead...

and starting on Monday I will get my port accessed and have the poison put in ...and it will do it's job and El Diablo will be no mas....

so sorry for all the secrecy but it's been a long recovery from the surgery and getting over the shock that El Diablo was still wanting to battle on.

I'll get through this...

one last thing...my daughter suggested that each chemo day have a theme so please suggest themes for me to make things a little less horrible every other Monday...

of course tomorrow is "UNICORNS"

and the next one is "PINK"

and the next one is "GLITTER"

I have at least 9 more after that so bring on the themes...

So tomorrow send me ALL THE PHOTOS AND MEMES on social media...put on your unicorn gear and send me love...

Thank you all for the love and support...with it I can keep going...

and El Diablo:

F
U

GET THE HELL OUT OF ME

(sorry for the bad language...)

Inspiration Song: "Don't Stop Me Now" by Queen...because before I got hurt I didn't think anything could stop me...and now El Diablo is trying to and I and #teamunicorn and #teamangel and #teamrockstar (which includes Dr. SweetMeds) are not gonna let him...so tomorrow when they start the new poison in my veins I am firing up this song on my phone and I'm gonna let Freddy Mercury scare the hell out of El Diablo...

Lyrics:

Tonight I'm gonna have myself a real good time
I feel alive and the world I'll turn it inside out - yeah
And floating around in ecstasy
So don't stop me now don't stop me
'Cause I'm having a good time having a good time
I'm a shooting star leaping through the sky
Like a tiger defying the laws of gravity
I'm a racing car passing by like Lady Godiva
I'm gonna go go go
There's no stopping me
I'm burnin' through the sky yeah
Two hundred degrees
That's why they call me Mister Fahrenheit
I'm trav'ling at the speed of light
I wanna make a supersonic man out of you
Don't stop me now I'm having such a good time
I'm having a ball
Don't stop me now
If you wanna have a good time just give me a call
Don't stop me now ('Cause I'm having a good time)
Don't stop me now (Yes I'm havin' a good time)
I don't want to stop at all
Yeah, I'm a rocket ship on my way to Mars
On a collision course
I am a satellite I'm out of control
I am a sex machine ready to reload
Like an atom bomb about to
Oh oh oh oh oh explode
I'm burnin' through the sky yeah
Two hundred degrees
That's why they call me Mister Fahrenheit
I'm trav'ling at the speed of light
I wanna make a supersonic woman of you
Don't stop me don't stop me
Don't stop me hey hey hey
Don't stop me don't stop me
Ooh ooh ooh, I like it
Don't stop me don't stop me
Have a good time good time
Don't stop me don't stop me ah
Oh yeah
Alright
Oh, I'm burnin' through the sky yeah
Two hundred degrees
That's why they call me Mister Fahrenheit
I'm trav'ling at the speed of light
I wanna make a supersonic man out of you
Don't stop me now I'm having such a good time
I'm having a ball
Don't stop me now
If you wanna have a good time (wooh)
Just give me a call (alright)
Don't stop me now ('cause I'm having a good time - yeah yeah)
Don't stop me now (yes I'm havin' a good time)
I don't want to stop at all
La da da da daah
Da da da haa
Ha da da ha ha haaa
Ha da daa ha da da aaa
Ooh ooh ooh

Bye Darlings: El Diablo might be still with me but I am here to stay...I have an Angel and a Rockstar and I am a magical unicorn...there is no stopping me....





4 comments:

  1. You will conquer El Diablo, you will find your Todd. I KNOW this to be fact.

    ReplyDelete
    Replies
    1. I am grateful each day that we stumbled onto each other in a forum...you are such great support...sorry I am just now seeing this

      Delete
  2. One of the best mental images that someone else provided for me (sorry ... I am not the originator of this), is the image of someone with cancer kicking it out the door, baggage in its hands. I imagine a nice steel-toe boot for the kicking duties. May you and Angel kick El Diablo out with a nice steel-toed boot or two and KEEP it out this time!

    ReplyDelete
  3. Those boots will have stilleto heels and yes me and Dr. Angel and Dr. Rockstar will GET RID OF EL DIABLO once and for all!!!!!

    ReplyDelete