Hello Darlings...
So it's been a few weeks since I blogged...sort of had a lot happen so pull up a chair, pour a cup of coffee (or wine, or water, or whatever), get comfy and settle in to hear the nonsense...
hmmmmm....
where to start?
in the past week I have had chemo, a hospital stay and my ex got married...so yeah your Magical Unicorn has had a lot of sheeeeet on her plate.
Let's start with chemo....
chemo...glorious chemo...
So let me tell you...Mondays in the MH Cancer Center are basically a circus.
Because Monday...
Because Cancer...
Because Monday...
Ever hear the old saying "Not My Circus. Not My Monkeys"????
Well that's how I felt the first time up there...
but guess what...
it's my damn circus and all the damn monkeys are mine.
And the monkeys are having a rave.
And they are serving trash can punch (chemo).
So there...that's what Monday is like in the MHTMCCC (Memorial Hermann The Medical Center Cancer Center).
But hey I like my circus and the tent has a glorious view of downtown and the lion tamers (the nurses) are the best.
So the ONE request I made..the ONE DIVA MOVE I have done was the following:
PLEASE DO NOT PUT ME IN A BED FOR MY CHEMO. I WANT A CHAIR.
Because unless you get one of the 2 "suites" as I call it with the big window all to yourself and a real hospital bed the other two beds are the hard awful gurneys and and they are only bearable for an hour and there is no window and I get to have the trash can punch for about 5-6 hours.
NO BED
Well when SweetMaria calls me up she says I am going to...
a bed...
oh no...
but lo and behold...
I got the Super Suite...I got the hospital bed with the big window...so my back was not in pain and I got to look outside and see our beautiful city the whole time.
My daughter and Aunt Jane came with me.
We made a party of it and brought unicorn horn headbands and played "Don't Stop Me Now" when the nurse gave me my dose of the newest brand of poison they have decided will kill El Diablo.
I cried...
not gonna lie...
looking at that bag of poison made me break down and cry because here the hell we go again.
Once the tears stopped (thanks to sweet hugs from my daughter) I handled the rest of the chemo like a boss (on a wicked steroid...that's the Everclear in the trash can punch: Decadron).
Chemo done we headed home, cooked dinner and I recovered.
The next day shall be known as the Day of Trying Not to Eat ALL the Carbs...
You know you are under the influence of a bad nasty steroid (ie the Everclear in the Trash Can Punch) when you:
Door Dash from JCI (translation: use a food delivery service to bring you food from a fast food place...in this case it was James Coney Island)
you order fries AND onion rings
you order a patty melt (and not a hot dog at a place known for hot dogs)
you forget to ask beloved daughter if she wants anything
you forcefully remove the fries (after eating 3) and onion rings (after eating 3) and half of the sandwich from yourself so you can't hurt yourself.
Yes...you Door Dash fast food and you don't look back...
(plan for next time: have a friend in place to bring me a healthy lunch the next day so I am not tempted to DD...or make my dear daughter fetch me something I should not eat.)
I survived the rest of the day and no more Door Dashers had to come to me and I didn't hurt myself with fast food.
And then Wednesday happened...
Let's start with the fact that I was launched out of bed by a call from the Ex.
The Ex got married this weekend.
more on that later...
but TCBITW (The Cutest Boy in the World) needed to be in an Uber at that moment and TCBITW was not answering his phone and his Padre was mighty worried. They had a plane to catch.
To Mexico.
More on that later...
So me being the NICEST EX WIFE IN THE WHOLE WORLD WHO PUTS HER KIDS AHEAD OF HERSELF got out of bed and stopped the Uber from leaving and got TCBITW out the door and headed back to bed where sleep eluded me even though daylight was barely dawning...
I had plans with KuteKris for lunch...now lemme tell you about KuteKris:
1)she is STUNNING (as in girl crush stunning)
2) she has the prettiest eyes I have ever seen on a human
3)her heart is bigger than her body
4)she is a badass babe cancer survivor (breast cancer....)
so we had plans and all of a sudden the "yucks" hit me...
KuteKris TOTALLY got it and I went to bed...
and then Aunt Jane and my former camp counselor (and Jane's friend) Terrific Tracy came by and I choked down some food and went to bed....
color Wednesday as :ugly...
Thursday: more of the same
Friday: More of the same...except I was having monster carb cravings again so once again the gods of Door Dash were summoned and dear daughter and I had IHOP.
Yes, we DD'd IHOP...
and I won't feel bad about it a bit.
IHOP blueberry pancakes can fix anything.
KuteKris fetched me ginger ale, my very favorite cookies (iced sugar cookies from Memorial Bakery are my drug of choice), and a beautiful rose plant.
I thought I was done.
Then Saturday happened.
Saturday I had plans with some of my #rideordie beauties to celebrate the upcoming birth of DearDom's little one Penelope (cutest name EVER). We had plans for pedis and lunch.
I made it to the pedi.
Lunch was when things got dicey.
1/2 an avocado toast and I called it a day.
And drove to school.
Now you are sitting there thinking "why the hell did she do that?" but it was auditions and I promised the kids I would show up.
So I showed up, saw that SashaFierce was there (y'all watch out...I'm 99% sure she's hitting Hamilton sometime in the next year...just a feeling I have but I'm betting on my girl.) and we headed up to the sound booth so I could nap.
I visited with her, napped, and heard glorious voices coming from below.
One voice I had not heard before but lordy I know talent when I hear it.
So I went downstairs, listened with pride to my kids as they sang their hearts out and then told GOTT I felt awful and needed to leave. He totally got it. I'm pretty sure I looked like hell.
Came home, got in bed, dear daughter climbed in with me and made me take my temperature and we watched it climb...
99.7
100.4
101.4
time to call Dr. Rockstar
And Dr. Rockstar quickly informed me I was gonna have a vacay in the hospital.but no
Really?
I had so many other plans for vacay...like KuteKaren1's lake house at some point....or maybe a quick trip to Austin....but no I get to go to Memorial Hermann...
Camiel and I packed my bag because there was no way I was gonna spend days in the hospital in the same underwear, in an ugly gown, with no skincare, and not have my pillow.
Fun tip: always pack your pillow
Fun tip: you will be more comfy in your own nightgown or pajamas
So I called up KuteKaren2 and she and her magic chariot got us to MHTMC and I got a fun visit to the ER (just the waiting room). It was a hoppin good time in there...
Fun fact: Saturdays are not a great day to go to a level one trauma ER...I kept hearing LifeFlight but thankfully did not see anyone...
Because Dr. Rockstar is a rock star she called ahead and they were semi-ready for me so after about half an hour they stuck a beautiful hospital bracelet on me and handed me my walking papers...
literally...
they told me to walk up to my room...
with a 102 degree fever
I asked for a patient escort...
Fun fact: there should be more than one person to wield a wheelchair to get a patient from the ER to a room. We were told I could walk up there or wait. With my fever (and generally feeling crappy).
yes, I want to walk the length of 6 football fields when I feel like hell.
no really....it's a huuuuuuuuuge hospital...
so we inquired about getting a patient escort to take me up.
ONE HOUR
NO THANK YOU
seriously--one hour...
I walked.
I had to stop several times but by damn I walked.
and collapsed on the bed.
I got into my gown, put on the adorable (kidding) yellow socks and got myself under the covers and yay I had a fever of 102.4
good times people...
good times...
I was having lower gut issues that were worsening by the minute.
I had been suffering for a few days but it had abated a bit...but came back with a vengeance.'
Fun fact: I do not like admitting that here but it is part of the reason I was in the hospital.
So first they have to make sure I don't have C-diff.
I'm gonna spare you the details but consult Dr. Google if you like.
If you are really feeling crazy Google one of the ways they fix it (hint: it's a poop transplant).
NO
THANK
YOU
I did not consult Dr. Google until they cleared me that I DID NOT have C-diff. (I learned about the "cure" from cute Dr. Resident 2). Apparently it is horrible to try to cure, especially if you are a cancer patient.
All done with Dr. Google?
grossed out?
yes I was too...
MOVING ON...
So Cute Dr. Resident1 comes in and tells me about the possibility of C-diff and informs me that Dr. Rockstar says I am her favorite patient.
Because I am
Because I am a magical unicorn.
now I have proof that I am the favorite for BOTH of my oncologist.
Because I am a magical unicorn.
She says they are gonna try to figure out what is wrong so they will run test.
So they ran test
and never figured out what was wrong but I got a sheeetload of antibiotics and thankfully since I was on the oncology floor they could use my port so yay no iv...
They put me on some antibiotic called vancomycin.
Fun Fact: if they infuse it in you too fast you can get "Red Man Syndrome"
Fun Fact: I got Red Man Syndrome.
I noticed a tingling in my scalp and then the itching started.
I called my nurse.
Nurse Felix walks in, takes one look at my face, races to the pump and turns off the meds and runs out of the rooms saying something about Benadryl.
I look at my face.
NOT
PRETTY
Red whelpy blotches everywhere.
It's common so it has a name.
I text photos of myself to Angel Amy and Twirler Girl...because you have to have sympathy when yo look like hell...
Nurse Felix comes in and hits me in the port with the Benadryl and boy howdy when it hits it hits like morphine...woah...
Fun Fact: Benadryl can MESS YOU UP
That on top of my sleeping meds and I was out like a light until they came in 4 hours later to poke me again and then back to sleep.
In the morning adorable Dr Resident 1 came in and checked me and we had a laugh about what happened and she confirmed I was now HER favorite patient.
Doctors love me...
just saying...
So then Dr. Rockstar comes in and I inform her that I was sorry I messed up her weekend but I had given her all of November, December, January, February and most of March not to deal with me and I was ready for her to focus all her love and attention on me.
She's such a badass...she has 5 year old twins...
and me...
I get to be her third child.
She tells me I don't have C-diff and we have no clue why I am sick and lets hope the fever ends and that the gut issues resolve.
She cursed me....
gut issues hit relentlessly (but damn I did not lose any weight because a carby BRAT diet was what I was told to eat)
Fun Fact: I get along with carbs just not the carbs that make up a BRAT diet.
I got another fever at 4:30 in the afternoon when KuteKaren2 was visiting.
Damn
Cute Dr. Resident 2 comes in and we chat...she tells me about the poop transplant. We bond. She tells me she is going home to eat lunch (it is 8:30 at night)
Fun Tip: be nice to the residents...they need to learn...and they are TIRED....
Now while ALL of this is transpiring my son is down in Mexico with his father.
Who got married on Sunday.
Congratulations to him!
(REAL TALK: I am very very happy for him and his new bride. Honestly. 100%. I got rid of him. I haven't been in love with him for at least 10 or more years. I have never ever every considered going back to him and I have never ever ever regretted divorcing him. I am happy he has a new life with someone who is nice and is good to my children.)
BUT KARMA F'ING OWES ME ONE BECAUSE HOW THE HELL DID HE GET TO GO TO MEXICO AND GET MARRIED AND HAVE A HAPPY FANCY TIME AND I WAS F'ING ALONE IN THE F'ING HOSPITAL WITH F'ING CANCER?
KARMA OWES ME BIG TIME
I am soooooooo tired of being alone.
I just want a date.
I do not need to get married.
I just want a nice man to tell me I look/smell nice and that dinner was good and that he appreciates me and holds my hand.
that's all...
(but if I do get married I am totally getting my body into incredible shape so I can wear a copy of Meghan Markle's Stella McCartney gown)
So my ex got married
and I was in the hospital suffering
and guess what...we both came out ok
because he is happy now
and I was incredibly well cared for on this little step in my journey
and things were as they should be...because he needs a new life and my life does not include him and my journey is through this hell called cancer so that things can be shared...learned...experienced...
and I fully believe that somewhere on this journey the man of my dreams will be part of it...he will have a part in this situation.
I have a dear old friend (and by old I don't mean she is old but rather she is one I have known for a very long time).
She was lucky enough to find love again and married the sweet man of her dreams a couple of years ago. They are so happy.
And now he has cancer.
And he will totally beat it.
Because he is going to.
I know it.
And God gave him to my friend because God knows that SHE is the right woman to handle what is happening to him.
She will help him through it.
She will be his helpmeet.
And soon they can resume a happy hospital-free life together.
(Shoutout to my girl B and my man T...when we get this sheeeeet under control how about meeting in the Big K for some dinner at King's Inn? The drum is on me...you get the shrimp...I'll bring the champs...can I haz my own tartar sauce?)
It's been so hard for them but they will make it...and their love story gives me hope that somewhere on my road there is the man God intends to love me...he's there...somewhere on this path...maybe he's someone I have crossed paths with and maybe he's someone I have yet to meet....but he's on the path...I know it.
I promised my children that we would always be a family.
We might not be a married family but we are a family.
And I totally welcome my ex's new wife and her son as part of our family.
They are my family now.
Forever.
Because family isn't just about rings, and weddings, and births and who's married to who.
Family is about who you love and doing life together.
It's about who you do the hard stuff with.
It's about who is there when the good stuff happens and the bad.
My kids have two parents that love them and now a step mother that cares very much for them (I can't say if she loves them but I bet she does as she is a loving woman).
They are lucky.
I am lucky.
If I was bitter and jealous my family could not work.
Yes, I sure wish I hadn't spent 2 nights in the hospital without a sweet love to hold me when I was scared and to laugh when my face turned red but that's not where I am in my journey.
Instead I had the help of very sweet nurses and awesome doctors and wonderful friends like KuteKaren2, Angel Amy and Heavenly Heather (who brought the sweetest card for me from #teamangel).
Angel Amy headed to Houston, plopped a casserole in my fridge before heading to the hospital with dear daughter in tow and came and fetched me for them to release me. We hit up Walgreens and Randalls and came home and gobbled up her delicious casserole and all slept like happy girls.
So there you go...the tale of my rollercoaster week....
a week of chemo...
tears....
happiness for my ex...
2 new family members...
my face turning red....
watching my kiddos sing briefly....
pedis with sweet friends...
delicious food prepared by a friend who loves me...
friends who took care of me and my dear daughter when I couldn't...
nausea...
great nurses and doctors...
fevers...
unicorn cookies....
and I almost had a poop transplant...
yeah...that last one was unexpected too...
Inspiration Song: Here It Goes Again by OK GO! One of the funnest (is that a word?) videos I have ever seen is to this song.... it's the one on the treadmills (watch it on YouTube)..literally one of the greatest videos ever (theirs are off the charts clever)...they once did the song live with the treadmills on an awards show and didn't miss a beat...because with me it's always "here it goes again"...
https://www.youtube.com/watch?v=dTAAsCNK7RA
Bye Darlings....my family is happy and intact and has 2 new members...I'm ok and didn't need a poop transplant but did get a really red face...and I get to do the chemo again after the holiday (and Dr. Sweetmeds assures me that I won't be nearly so sick this next time...but I'm not holding my breath because if there is a wrinkle to be had I will make it into a mountain)
I'm going to start dedicating my blogs: this one is for you Brenda M....and Tom....
#uterinecancer #cancerblog #teamunicorn #princesscancer #uterinepappilaryserouscarcinoma
Tuesday, May 22, 2018
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:
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....
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 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
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
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
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
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....
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