it's been a hot minute since I blogged but I have a good excuse...I was literally working day and night getting ready for our musical "Mary Poppins". It was long days with long hours but totally worth it. The kids were jaw dropping amazing. My team of girls (who I refer to as the sweet woodland creatures that help the Disney princess) were ON IT! They were incredible! It could not have been a better show and it is one of my all time favorite and best theater experiences. If you saw the show---thank you for coming! If you missed it I am sorry to say you missed a helluva show. High school musicals here are like a full length Broadway production and the talent is mind blowing...next time you see that your local high school is putting on a show buy a ticket and go---it's likely to be more than you expect. I'm honored to say I had a lot of sweet friends come out to support me and my students and my radiation team and Dr Rockstar even found the time to come out and support their favorite unicorn...
so back to blogging...and an update on what is going on with El Diablo...and why I might need a spoonful of sugar...
2019 has started off with a bang...our musical was a triumph but my cancer has not been.
Dr. Rockstar gave me a little chemo break to do what I needed to do for the show and then I had a scan.
Have I mentioned that I hate scans?
Because they are terrifying.
Not the process...that is easy...and I've had so many I am on first name "hug you when I see you" basis with the techs that do the scans. Their names are Debbie and Rod. Add them to your prayers because they are good people.
The scans themselves are no big deal. I check in, put on a gown, drink some fabulous contrast (ok it's not really fabulous...it's gross). I drink that contrast down like a boss. Because I haven't been allowed to eat or drink for 4 hours I make it go down fast so I can get it over and eat.
45 minutes or so later they come get me and give me a nice little iv and off to the machine I go...
I lay there and pray.
And I pray fiercely and mightily.
I pray with all my spirit that my scan will be ok.
A few minutes later it is over.
Then I usually pop down to Dr. Angel and behave like a brat so that he will stop saving everyone else's life and pay attention to me.
Except this time he was super busy and not able to stop his world to deal with his unicorn.
The nurse said he would call me.
Not sure why but I didn't hear from him.
I waited for the call but the call never came...
I knew the results would be on my patient portal the next day so I knew I would know the results but I need things explained to me at a 5th grade level when it comes to my disease and those reports are written for doctors.
The next afternoon the radiology report hit the portal.
I really really wish Dr. Angel could have seen me or called.
Or I should have asked Dr. Rockstar to hide the report from my portal like she does my CA125 so I don't freak out.
No patient should read stuff they need explained on their portal.
Because it is terrifying.
I read the first report---the one on my chest and neck.
It was clear.
Thank you Father, Son and Holy Spirit...
But then 20 minutes later the abdominal CT report hit the portal and my terror was real.
All 5 lymph nodes that had previously measured with cancer showed measurable growth.
All 5 lymph glands that can't be removed because they are dangerously close to a little thing called my aorta.
So yeah one tiny slip of the scalpel and I will bleed out.
There isn't a surgeon in Houston skilled enough to do that.
There isn't a surgeon anywhere you can do that.
And frankly I don't want anyone to try.
I'm not a living breathing version of the game "Operation" although I have had so many surgeries lately I feel like I could be.
Remember that game? you took out the pieces (I always went for the Charlie Horse or wishbone) and if you hit the sides it buzzed. I'm pretty sure that slicing into an aorta would cause more than a little buzz.
And one or two of them are the badass lymph nodes that keep me from having terrible lymphedema that could lead to me having a leg the size of an elephant.
Yeah it would be hard to spin or do yoga with a leg the size of my waist.
and it would be painful.
I have enough side effects going on without having to drag a 200 lb leg around.
So basically if we can't remove all of them there is no point in risking my health to remove one or two.
So I read on the portal all this awful stuff and all I wanted to do was curl in a ball and cry.
So I cried.
The curling in a ball thing didn't happen because I was at school and I didn't exactly want to lay on the floor of the Black Box.
I told GOTT and he made me feel a bit better and then I got in my car and called my Aunt Jane and had a good cry.
And lest you think Dr. Rockstar and Dr. Angel are cruel for letting me read it on the portal instead of just telling me---she thought Dr. Angel was going to be able to see me and read it (because he is the scan reading specialist in my oncology duo) and he was just swamped and probably didn't realize I was gonna read it myself. She told me to not do that again and if I can't see him or hear from him to call her and let her give me her thoughts. And hell yes that is what I am doing next time.
So I spent the next few days praying, staying busy, and trying to forget what might be going on in my body.
I thought about my kids and how they might have to handle things if I got sicker....
I though about my students and fretted that I might miss out on future shows and watching them do magical things...
I thought about my friends and how I needed to be with them to try to brush aside those terrible thoughts that were banging around in my head.
You see when you are dealing with a deadly illness no matter how hard you try the bad stuff will creep in and whisper to you...it says ugly things in a seductive voice that makes you listen.
When El Diablo talks to me he says things like "be sure you tell someone you want this song played at your funeral"...or "you better find someone to take your cats when you are gone"...or "so and so might like this as a memento when you are gone"...
yes, those thoughts go in my head.
And what do I do in response?
I yell out "not today you bastard El Diablo...not today!"...
and then I pray...
And I ask God to quiet those thoughts and help me see a future for myself and not my funeral.
I try my best not to let that voice be heard but sometimes it is hard to keep it quiet.
Because I've been told that I will not overcome this disease.
Not with the technology we have available at this time.
I just need to stay alive long enough for the science to catch up to me.
But frankly since uterine cancer isn't breast cancer we don't get the research funds and research that the pink people do. Not all women's cancer is pink but it's the only one that gets any real attention. (and yes I am aware that men get breast cancer too...it's just more rare)
I'd make a bet that most of you didn't know much at all about uterine cancer before I had it and spread the word here and on social media but you could probably tell me that breast cancer awareness month is October and we do all things pink then.
There are tests for detecting breast cancer early.
Not so for uterine or ovarian...there are no screening tests (except for the imperfect CA125), no scans (my CT scans were CLEAR prior to my hysterectomy and yet my body was full of tumor) and most insurance companies won't pay for things like a PET scan or anything else until you have a real reason for diagnosis.
With uterine and ovarian cancer you don't get to walk in and have a machine do a scan that can see if you might have an issue...
you have to be bleeding first...and by then it is often too late.
The symptoms mimic menopause so often we just chalk it up to that.
And a pap smear won't tell you if you have uterine or ovarian cancer only if it is cervical.
We need awareness, research, and money....
But we don't have cosmetics companies offering to make peach lipsticks for us to raise funds and awareness...and we don't have athletic wear brands making peach or teal clothing to show support.
So that's why I do my small part here preaching to all of you to raise awareness...if I can get just one woman to see a doc or one woman to go ahead and get a hysterectomy when she is done with childbirthing then I might have saved a life or two.
And next time you want to throw a few dollars to support a good cause think about supporting uterine cancer research...we need the help...if we could do for the peach what we have done for the pink we might have some screening tests and genetic testing and better drugs and cures...keep supporting the pink but throw a little love to the peach too...
ok so off my soapbox and back on to what is happening with El Diablo...
(and to my breast cancer friends please know I admire you so much for your fight and I take nothing away from what you go through or have been through---just know you are very blessed to have cancers that get some attention. My pink girls are amazing warriors and I have watched some of them go through some really nasty stuff to get cured.)
But in my case the chemo is just keeping me alive...it's not curing me.
Because Uterine Papillary Serous Carcinoma doesn't get cured...it's one of those nasty beasts that just likes to stay around like a fungus...
it's impossible to kill and it takes some work just to keep living with it.
Dr Rockstar has been frank with me about this.
We can survive but we don't get cured.
I basically have a long-term chronic illness.
So I need to keep surviving for as long as I can.
Because I believe in miracles and I believe that something will happen that will make it go away.
I have to believe it.
I will not give in to this hideous disease.
I had a friend tell me she admired me for the way I keep going.
I told her this:
Each day I know I have to sink or swim. I have no choice...it's sink or swim. So I swim. Each and every damn day I keep swimming like Dory.
I wake up and tell myself that I am Michael Phelps and that I am the greatest swimmer in the world and I am gonna keep on swimming and I am gonna swim good enough to win gold medals.
That's it...I just have to keep on going.
So I do.
I do yoga.
I hang out with friends.
I sometimes clean my house.
So Twirler Girl played wingman and came with me to see Dr. Rockstar on Monday.
I was so afraid that my blood pressure went up and I was crazy with worry---honestly I don't know how she put up with me.
But Dr. Rockstar came walking in with her big beautiful smile and said "I"m not mad about this scan"
And I am pretty sure I looked at her like she had lost her brilliant mind.
But then she calmed me down by telling me that CT's aren't perfect and that a lymph gland's measurement can change the slightest bit by what angle it is measured from. And she said that even though there was growth in all 5 lymph nodes that it was TINY growth (to me it seemed like it was miles of growth but that's just me not understanding this and why I need a doctor to explain it).
So she said that even though it wasn't GREAT...it wasn't BAD...
and that she was actually expecting worse...
And that we were going to keep going.
And then I asked her: so do I GET to have chemo?
And she laughed...
Because I was EXCITED to get to do chemo.
Because I feared that we were going to have to stop it because of my side effects or change meds.
But she doesn't want to change the meds and "agitate" the cancer so we are staying on the cisplatin/Gemzar routine except that Glory Halliluyer I get to have it every 3 weeks instead of every 2.
Oh that is lovely...it means I have one additional week to feel ok.
She doesn't want to overstress my already overstressed bone marrow (because if the bone marrow is in bad shape...well...let's not talk about that option)
And because I am having some super fun side effects...
Do you want to know what they are?
Of course you do (don't!)
But I'm gonna share anyway....
So i'm having some neuropathy in my fingers and feet.
Basically they tingle all the time like they are "asleep".
So typing isn't easy but I manage...
And if I drop my head chin-to-chest it sends a little electrical shock to my feet.
(no not fun...but whatev....)
Long story short I've had some not great growth in my lymph nodes and the cisplatin is causing some not so great side effects but the good news is that I am well enough to have and withstand chemo and right now that's what is keeping me alive.
Because I need to give God time to make His miracle happen with me or for Him to have science advance so that I can have that miracle.
And just to add to the fun I have been having this week I now have a possible case of diverticulitis and have a weird bad pain in my lower abdomen.
(yes I saw my Doc...we are treating it with antibiotics and if it gets worse guess what? I get ANOTHER CT scan! whoop!)
So it has been 10 days of scariness and medical stuff for me.
But guess what?
I still feel lucky.
Because even though I have cancer I know I can do hard things.
And these are some hard things.
But I also got the huge pleasure of watching my students on the stage and they did a great show and my girls helped me execute a fabulous costume/hair/makeup job for the show.
I learned something from Mary Poppins that I had forgotten---a spoonful of sugar helps the medicine go down.
Because in every job that must be done
There is an element of Fun
You find the fun and snap!
The job's a game...
So I took myself over to chemo after seeing Dr. Rockstar and I laughed and joked with my nurses and I hugged them and I shared photos of the show and I got to spend the day with one of my besties (TwirlerGirl) and so it wasn't so bad.
And as that poison dripped into me I realized how blessed I am to be able to receive such care and to have had my cancer found.
And that I feel and look as good as I do (I'm not talking about looking pretty but rather that I don't look sick).
And that I can spin and do yoga.
And that I can do fun things with friends.
And that I can watch kids sing and dance on the stage.
And most importantly I can spend time with my two amazing children and my aunt....
Because 2 years ago none of this was promised to me.
I could have died in that surgery and I could have been so riddled with cancer that she just closed me up.
But Dr Rockstar didn't give up on me...she opened me up, saw the horrible mess that I was, and she went to battle to save me.
And Dr. Angel uses all his super smarts to try and do all he can with his magic machines to fix me.
And they give me poison to keep me alive.
And one day I truly believe this will all be behind me.
Current medical information says maybe not but I believe that science is not always perfect.
So I believe I will be cured of the incurable.
And I will look upon my journey to that wellness with a love and gratitude for what I have been through.
Because it has shaped and molded me into a better woman.
A better mom.
A better friend.
A better niece, sister, cousin, aunt....
and maybe someday a better girlfriend or wife....
Because the old me had much of life just handed to her...
and now I have to work for it...
I have to stretch and reach....I have to do hard things.
I can sit around and cry and whine and fuss about what I have been handed.
And sometimes I do.
Don't think for one minute that I handle all of this like Mary Poppins....sometimes I'm like a Banks child about it and I'm a brat.
I do cry and whine and ask why this has happened to me.
But at the end of it all I know that there is a purpose to all of this and it's not mine to know why just yet but some day it will all be abundantly clear.
But for now I know that all the tears in the world won't fix me like chemo does so I do the chemo.
And all the whining and fussing won't change how things are but my attitude can clearly affect how I handle what is happening.
Life is better when we find the sweet in the bitter.
If you dig around enough or search hard enough you can find that spoonful of sugar to make the medicine go down in whatever you are faced with.
For me the sugar is being grateful.
because being grateful makes it all easier to take than being bitter about it does.
If I sit down in that chemo chair with hope and faith then the medicine goes down much better.
(even the dreaded Dex...which burns...)
We all have hard things to face.
Maybe yours are not as challenging as mine...or maybe they are more challenging.
It's not a competition on who's plate is the fullest...but maybe we should judge it all by how we handle that full plate when it is handed to us.
My plate is as full as a Thanksgiving day dinner plate...there is a lot of turkey, green beans, mashed taters, sweet potatoes, dressing, brussels sprouts, rolls, cranberry sauce and gravy on my plate.
But hey at least there is gravy....
because gravy makes it all better...
so yeah, I have a very full plate.
And I don't have to eat all of it at once...
so I'm gonna take small bites of each and I'll finish the plate when the time comes.
Because there is pumpkin pie for dessert....
And for me that pie is a happy long life that is waiting for me after I finish all the dinner stuff.
Personally I like to sometimes eat dessert first but in this case I have to wait on my pie.
so I will...
and I'm pretty sure God is going to put a lot of whipped cream on it for me....
Inspiration Song: A Spoonful of Sugar from the musical "Mary Poppins"...because a spoonful of sugar can help anything go down easier...and because my kids sang it so wonderfully (like better than anyone ever did...they were magical)
Bye darlings---find your sugar to sweeten the hard times....I know I am trying to do it for myself...