Sunday, February 16, 2020

Dare Me

Hello Darlings...

If you follow me on social media you know that in November things really went sideways for me...

so here's an update on what is going on in the land of #teamunicorn and how the last few months went down...and ironically all of this happened right at the 3 year anniversary of my cancer diagnosis...

So a few months ago I started to have some sciatica issues...I expected it and wasn't surprised when it happened but the pain was really bothering me and I got a bit worried...and as always I worried that it was El Diablo rearing his ugly head and so it scared me.

Because when you have cancer EVERY LITTLE THING makes you worry if it's not as it should be...

you get a sinus infection---you worry...

you have gut issues---you worry...

you get a headache---you worry...

you get sick---you worry...

you have pain---you really worry...

Last summer I battled a major kidney infection and several UTI' the stuff with my back...but then I had a scan and it wasn't a "scare the crap out of me and the doc" scan so I thought I was in the clear. The kidney infection had cleared up and other than my back hurting a bit I was doing good...and I was really feeling strong in my yoga practice.

In fact I had found a renewed love for yoga...I was literally craving it and I would sometimes practice 2 hours a day if my schedule allowed me. I couldn't get enough yoga and each practice made me feel stronger and I was starting to find more balance and flexibility.

Yoga was doing my body some real good...

But then my foot blew up...

it went from a cute size 8 to a Bilbo Baggins hobbit foot over the course of a weekend...

seriously it was so big and fat I was waiting for it to sprout hair and I wondered if I could even get a shoe on it...

but I knew what was happening---lymphedema.

My poor lymph nodes that serve my left leg are the ones with cancer in them...and after 3 years of cancer and all the chemo I have poisoned them with they were tired...

and once you have lymphedema it is irreversible and have it won't go away...

so lets add that to the list of things cancer and cancer treatment has taken from me or done to me:

complete hysterectomy
removal of several lymph nodes
weakened spine due to radiation
weight gain due to steroids
gut issues due to radiation
neuropathy in hands and feet due to chemo (they tingle non stop)
spinal fusion due to weakened spine
compromised immune system due to chemo
low hemoglobin due to chemo
low red blood cell count due to chemo
knees that are bone-on-bone and can't be fixed because I can't stop chemo
lymphedema in left leg due to chemo/cancer
slammed into menopause due to cancer
inablility to take HRT because of cancer
kidney issues due to chemo

so yes---the fun addition to my health was not welcome...because lymphedema means that I will have to wear compression garments for the rest of my life.

I can't wait for August when I have to be in full compression tights...that's gonna be a lot of fun...

So I began therapy for the lymphedema (and had to drive to Sugarland for it since the location close to me was fully booked until December) and began the process of having to bandage my leg from toes to thigh each day and sleep like that and wear some sort of compression garment during the day.

And it's so fun when you are already hot at night to have a leg that has 4 layers of bandaging materials on it...

I'd had a scan November 11 and the results were---mixed...

but things didn't look too bad other than some lymph nodes growing and others shrinking. And there was some kidney stuff that I had no clue what it meant. The day I got the scan results I was at lymphedema therapy so my therapist and I did a little dance around the room in celebration...

but then while doing my therapy my therapist noticed that I was limping and having issues with my left hip.

I had noticed a weakening in my hip flexors in general but by early November I was really struggling to get into a bridge pose.


Congratulations Anice! You have been gifted with yet another medical issue...

I wrote it off but noticed that after yoga my back felt better but then it would get worse again...and finally on November 17 I had a day where I couldn't really get out of my back hurt...

so I did the sensible thing...

I went to yoga!

After class I went to my car and each step was excruciating...and it felt like my car was getting further and further away with each step.

I got home, unloaded my groceries I picked up, fixed dinner (all while having to sit down every 3 minutes) and cleaned the fish bowl...and when I finally collapsed into my bed after my shower I knew I was in trouble.

And dammit it was my birthday week.

I had all sorts of plans of special birthday spin classes and some very special yoga classes and a get together with some of my best girlfriends.

But with me when I make plans---


So Monday the 18th of November I packed a bag with Aunt Jane's help (along with me having to literally crawl on the floor because I couldn't walk without horrific pain) and we headed to chemo...although I knew all along I was going into the hospital and not chemo.

I called Dr Rockstar's office and asked if a nurse could meet me with a wheelchair and when Sweet Jackie wheeled me into the cancer center all my peeps there knew I was in trouble.

When Dr Rockstar came into the exam room I told her "Happy 3 year anniversary! For your gift from me I give you a confusing scan and my inability to walk!!!!"

She didn't like her gift...

in fact she asked if she could return it...

I had planned to bring cupcakes and unicorn things and have a little party with her and Dr. Sweetmeds and my chemo nurses but my pesky back made that impossible---and she laughed that only me would think that being her patient for 3 years was a reason to celebrate but hey the woman is a goddess and amazing and she has kept me alive.

So she looked at me and said "no chemo for you! you are going across the street to the hospital!" and I told her I was one step ahead of her and my bag and pillow were in Jane's car because I knew things weren't right. And she was putting me on my favorite floor (yes, I have a favorite floor---I've been there enough) and with my favorite nurses (and yes I've been there enough that all my nurses know who I am).

The good news through all of this was that 8 weeks before my spine went out of whack the powers that be that decide such things had declared that Uterine cancer patients with certain types of tumors could now go on immunotherapy with Keytruda and a drug called Lenvina and that I qualified. She figured it was a good time to make the switch and Dr Sweetmeds was already working with my insurance company to provide me with the necessary drugs.

I honestly feel like this is the miracle I have been praying for...but at that time back in November my biggest challenge was to get my spine fixed.

Dr Rockstar called the neurosurgeon's office and they sent me across the street to the hospital, put me in a room and tried to get an iv started because they had to get me into the MRI with contrast and my port can't do that.

I warned the nurses I was a "hard stick" and they promised to get my port accessed ASAP but at that moment I had to get the iv in so he tried once on the left arm and the vein immediately blew (and it hurt).

They decided to go after my one good vein in the inside of my right elbow and got it to work. Not a great place for an iv but I wasn't willing for them to go poking at my hands at that point.

Into the MRI I went. The tech there remembered that I had been the woman who slept through the machine breaking down twice the year before with me in it completely asleep (thank you Adavan and Ambien).  This time I just had the Adavan (because I can't get into an MRI without it) and dozed while the machine banged away to reveal what was wrong...

Unbeknownst to me Dr Rockstar and Dr Spine were each thinking the other had a big problem on their hands---Rockstar felt it was my spine and Dr Spine thought it was cancer.

Rockstar won...or is it lost? In any case she was right and I was Dr Spine's problem at that point...

I had compressed my L4/L3 disk so much it had formed synovial cysts...and it was causing spinal stenosis and a lot of other problems mostly nerve related.

and all you need to know about that was that it meant spinal fusion surgery for me once again...

Color me very pissed off...

So they hooked me up with some pain meds and tried to schedule me for surgery for the next day.

I prepped for surgery, drank my Gatorade to keep me hydrated, ate a carb loaded dinner and got to know my wonderful nurse Ericka.

Woke up the next morning with my very favorite resident Dr Neurostunning (gorgeous and smart as hell and badass) gently shaking my arm to wake me to sign papers (and she had her #teamunicorn bracelet on for me!). Aunt Jane and I waited and when 3:00 came and I hadn't been taken down for surgery I knew I wasn't going to get cut on that day.

Dr Spine came and in and told me that we likely wouldn't get me to an OR until 8:00 pm that night.

He and I decided that we didn't like that plan.

So it was rescheduled for the next day.

Happy 55th birthday to me!

To make the day better they moved me into the Princess Suite on that floor and let me keep my nurses. I had a room large enough to throw a rave in...

Ericka came on shift and says:

"Girlfriend---where is your dinner tray?"

oops...I had forgotten to order dinner...

So Ericka being the goddess she is used her break time to go down to the cafeteria to get me dinner and more Gatorade (I had read that Gatorade helped your body prep better for surgery so I was chugging it).

I was really having a great big morphine pity party for myself that night because I had missed my birthday ride at Revolution with Marvelous Mel. Cried my eyes out when they sent a video of them singing "I wanna dance with somebody" for me...

and then I found out my friend's house burned down and they lost their pets.

At that point I stopped feeling sorry for myself and cried for them...

I had surgery the next day and I definitely plan to do something different next year on my birthday...because I do not recommend having your spine rebuilt as a birthday gift.

I woke up in recovery and did so well that my nurse was surprised (thank you Gatorade) and maybe it helped that I had relented about them giving me morphine...

I had amazing nurses while I was many of them had cared for me previously that they feel like dear old friends. I got to have my favorite nurse Mimi care for me twice and sweet Lorena made my post surgical nights much better. Adam was my hero by accessing my port for me and making sure I felt loved and cared for and...well...I could go on and on but I'll just say that 3 Jones at Memorial Hermann has angels working there...

The next day my incredible doctors gave me a little birthday party in my room complete with Crave cupcakes and unicorn gifts lovingly selected by Dr Sweetmeds and her adorable daughter.

Read that again: my doctors gave me a birthday party...

I have the best doctors in the whole world...God put me with Dr Rockstar and Dr Sweetmeds because He knows I need attention...

and the nurses sang to me and honestly as awful as it was to be in a hospital recovering from having my spine fixed it wasn't the worst way to spend my birthday...

ok maybe it was the worst way to date but they made it much less awful than it could have been.

I can't say the same for the food there...

I had to stay several days recovering and the last night I was there sweet Chizo---my favorite Nurse Tech---came in and asked if I would like to have a bath.

Since I couldn't do it alone, and hadn't had a "good" bath since Wednesday morning I was very happy to accept her kind offer.

She lovingly bathed me in a way that I can only describe as the loving care one woman gives another...I cried with her kindness and the gentle way she made sure I stayed warm and clean. Sweet Elysee, the other nurse tech, came in and changed my bed and they helped me into a clean gown and brushed my hair and then tucked me in.

I cried after they turned off the light because I knew that that simple act of helping me bathe was more than just a bath. It was their way of saying "you are cared for" and it was so much better than the sponge bath I had the previous day. For a woman who usually bathes/showers twice a day it was very much desired.

I finally got out of the hospital after 6 days in and was so happy when Aunt Jane brought me home and Fabulous Vicki brought me my much craved for Popeye's fried chicken. The next day Aunt Jane and GOTTESS (aka Sistah Wife) helped me shower and changed my bandages and I got on to the healing and recovery part of the process.

The holidays came and went and thanks to family and friends I got to have my turkey, had friends trim my tree for me (that was a very fun night) and I got busy working on "Crazy For You" costumes since we had a show in early February.

And here I am 3 months later and I am still recovering.

The lymphedema still plagues me (and always will) but I now have a pump I use every night to help push the fluid through my body so that the leg doesn't swell up to elephant size. It swells some but sometimes it swells more and it hurts. But I am grateful for the pump...

I can't manage to bend over without holding on to something. My spine is weak and the simple act of picking something up from the ground or putting food in the cat's bowl results in me shaking and sometimes falling over.

I still need a walker to go any distance and I can't stand for very long.

My left leg is still suffering from nerve damage so I can't really pick it up or move it without my helping it. I can't step up on a curb or step on my left leg or my leg will buckle out from under me. The nerves are very very slowly trying to heal but this is taking so much longer than I planned.

I hate having to use a walker but these days I have no choice. I'm still a little unsteady and my right knee is so bone on bone that if I stand for more than a few minutes I pretty much can't walk after that. I desperately need a knee replacement. In fact I am pretty overdue for one but I can't because of the cancer and the need for chemo...

and speaking of chemo...

That miracle that I mentioned above? The Keytruda and Lenvima?


I had a rough few weeks adjusting to the chemo pill (the Lenvima) and my blood pressure skyrocketed and caused me issues but we finally got me on a dosage that I can manage. Poor Dr Sweetmeds had to put up with endlessly texting me to make sure I was ok and not going to have a stroke from my blood pressure.  It makes me fatigued but I am used to that.

My CA125 was 150 when I went into the hospital in November and last week it was down to 40 after 2 months of Lenvima and 4 doses of Keytruda.

It is the miracle I have prayed for.

I will have a scan sometime in the next month or so and we will know more but for now Dr Rockstar and Dr Sweetmeds tell me I am doing better than they had hoped for so I think that is a good sign.

So even though I have been through a lot I am so grateful that my biggest issue---cancer---is being managed and maybe even have a chance at a longer life...

So there you go---that's what I have been through since November 17. And in the middle of all of it I spent 6 days a week for 6 weeks working on a show where my kids were incredible and I got to use some gorgeous costumes designed by my friend DesignerDee. Her work is so beautiful and it was an honor to get to use the costumes for my kids and they did her proud. I had a team of moms who helped me so much that I honestly could not have gotten it all on stage without their help. They were my angels...

And tomorrow, for the first time since November I am going to climb on a spin bike and ride.

I've missed getting to sweat and work out. I miss yoga so much it hurts but given my nerve damage and spine situation that might have to wait.

I'm scared shitless to get on that bike tomorrow.

I'm not even sure I can get on without help and I know I will need some help to get off.

But I'm going to do it.

Because I can't keep being afraid to try.

When I am confronted with a challenge I used to hide from it or avoid it as long as I could. But cancer has changed that and when a boulder is put in my path I just walk around it instead of stopping myself and giving up.

The other day I had lunch with a man who is like a father to me. He has watched me grow from being a spoiled teenager into the woman I am now. I told him that the girl he met when I was so young is so different from the woman I am today. Not just because I have grown up but mostly because that girl would have just cried and given up if she had to face the things that my grown up self has fought through.

Cancer has made me grow and appreciate things that I would not have appreciated even 5 years ago.

Cancer has robbed me of a lot.

But I have also gained so much.

And as hard as it has been to face this cancer the things I have gone through have toughened me but not made me hard to the world.

I'd have loved to have not had cancer. Or at least had a cancer that surgery alone had cured. Or surgery and radiation. Or surgery and a 6 round protocol of chemo had fixed. Or that chemo and radiation had gotten rid of.

But I have stage 4.

So all of that helped but didn't get rid of it.

But maybe, just maybe this new stuff will.

I am a pioneer with it. There are some women who have been in the trials and they are doing better. And some of the ladies who started when I did are showing great promise.

So maybe God is going to keep me here longer thanks to these drugs...

And God keeps giving me the challenges I keep facing as a way to show me that He is with me.

Because it is my faith that assures me each night when I take those pills that God has tempered me like fine chocolate.

When you temper something you improve the consistency, durability or hardness of a substance by heating and cooling it.

When you temper chocolate you heat it gently until it becomes smooth and glossy and by doing so you prevent it from the dullish appearance it can get and it gives it a better texture.

So I think of myself as some very fine dark chocolate---and with all I have gone through God is slowly warming me up to improve me. He stirs me and keeps me over a gentle simmer. And once I have reached the point He wants me at He will pour me out and I will be shiny and lovely.

And sometimes when tempering you have to continue to heat the chocolate until you get it to the right point.

I think now I have been through so much that maybe--just maybe--I might be ready to be poured out and will be silky and smooth and have a nice snap! (and sadly my "bend and snap" days might be behind me thanks to my spine...)

I know I have been through a lot but I also have friends who have greater challenges than me...friends who have lost their child...friends who have lost their partner...friends who have lost their home and fur babies...friends who have lost their life...

Me---I'm just a woman who has faced some challenges in the course of her life and those challenges have molded me into who I am.

Hell I am a damn chocolate unicorn and I am one of a kind...

So now when God puts me into the heat to smooth me out and I have to face things because of it I feel like asking if He is daring me to go further and try harder...

Because if I am the kind of woman who can have spinal fusion surgery and 2 months later fully costume a show with 63 kids I think I can do a lot more than I ever imagined I could do. It might have taken me borrowing things from a friend, using a walker and losing sleep but by golly I did what I needed to do.

There was a night I was so tired I forgot that my last name was no longer my married name (true story---I literally forgot one night that my last name was my maiden name now because I was so damn tired I could not think).

Make my knee so bad that I can't walk and I'll just use a walker...

Give me a new drug that makes me tired and messes with my blood pressure and I'll just swallow the pills and find strength inside myself to push on...

Fuse my spine and I'll just find a way to bend over anyway...

Because you see if you dare me I'll take you on...

Go ahead...dare me...

I've got my own strength and all of you...

I'll take it on and win...


Inspiration Song: "Dare Me" by the Pointer Sisters...a longtime favorite and every time I am faced with a challenge I play it and sing along and I'm kinda hoping my bae ChampagneAndCycle will play it for me the next time he is inspiring me in class to go a little harder and faster on the bike...


I've got a chip on my shoulder with you name on it
Knock it off
So don't just stand there foolin' if you don't want it
Knock it off
I say you're either a lover or you are a liar
So don't you push too hard
You're playin' with fire
Baby, make your move
Step across the line
Touch me one more time
Come on, dare me
I want to take you on
I know I can't lose
I'll be loving you if you just dare me
Looks like you're lookin' for trouble
And I'd say you found it
You found it
You'll have to come right through me
There's no way around it
You found it
I hope that lean hungry look means what it's saying
'Cause I'm just sittin' on ready, ready and waiting
Baby, make your move
Step across the line
Touch me one more time
Come on, dare me
I want to take you on
I know I can't lose
I'll be loving you if you just dare me
Come on and dare me
Bye Darlings...I dare myself to take myself on...and I will win...

1 comment:

  1. Hi! just checking with - hope you are doing okay with this virus stuff! karen