Tuesday, December 31, 2019

If We Have Each Other

I'm gonna take a break from talking about me, me, me in this blog---ok there will be some "me" here but I'm not gonna talk about what has happened with El Diablo right now...maybe tomorrow...maybe next week...but I want to talk about other stuff...because medically I am a hot damn mess and I need a break from it...so look for a blog (maybe tomorrow) that is my usual year end summary and I'll fill you in on El Diablo and my latest nemsis The Devil Drug Lenvima and my Stupid Spine...so here we go...

Hello Darlings...

2019 is coming to a close...end of a year and a decade.

it was one of a lot of change for me but I'm not gonna go into that today...it can wait...I feel like sharing feelings tonight and not my latest medical battle.

But there is one thing this decade has taught me---that being alone is hard.

You need family...and friends...and friends who are family...and for me I need #teamunicorn...

Today was a perfect example of needing my team...my car wouldn't start.

After a call to my service guy at the dealership we concluded my battery was dead/dying. 

So Marvelous Megan came over and Valiant Vicki and her daughter KuteKaelyn arrived as well. Megan had a jump start thing that we tried to no avail...and just as we were about to push my car into the driveway to try to jump it (don't worry those of you who know my medical situation I was not pushing) I realized


yes, I am brilliant...

let's blame chemo brain...I get to ride that train for a little while longer...

so once the fob was in the car the charger thing worked like a champ and I got the car to the dealership and a new battery in and V and K took me to lunch while they were working on the car...

but I couldn't have done it without those ladies...

friends who show up for you are the best...

because when you take a moment to go out of your way for a friend in need you are an angel...

and lately I have needed a lot of angels...

and speaking of angels---let's talk about nurses.

My nurses and doctors are the best.

I'll fight you on this one...I have the BEST nurses and doctors in my life.

The best..

None better.

And the very best nurses are at the Memorial Hermann Cancer Center and at Memorial Hermann The Medical Center 3 Jones.

Well actually all nurses are angels---these are just the ones that help me.

And Dr Rockstar and Dr Sweetmeds are the most amazing cancer doctors.

Ok so I'll talk a little about what has happened with me...for those that don't know I ended up having spinal surgery on my birthday.

Happy Birthday to me...

But my nurses and doctors were so kind...they gave me a birthday party in the hospital...complete with cupcakes and presents and morphine...

Dr Sweetmeds and her daughter even went shopping and bought me unicorn treasures...

And all of my nurses were so amazing---they so lovingly cared for me.

Amazing Adam stayed after his shift TWICE to access my port so my veins would not have to suffer the morphine and antibiotics.

Marvelous Mimi came in on her day off to help out under the condition that I was her patient. I've been her patient almost every time I have been in the hospital. She is my sister from another mister.

Extraordinary Ericka not only was super fun and helpful but even went to the cafeteria for me when we discovered that I had forgotten to order dinner and room service was closed. Yes...she used her break to go get me a burger and Gatorade. She is a goddess.

Lovely Lorena was new to the floor...we bonded over the long nights post surgery...and when I gave her a #teamunicorn bracelet she cried...

Helpful Henrietta took tender care of me...she's a nun and marvelous...and every time she starts her shift she comes into my room and rearranges it while she sings a happy tune...she likes everything "just so" and as I watch her move chairs around and tidy up the room I'm reminded that wellness doesn't just happen in a hospital bed. And that Disney needs to make her into a Nun Princess who sings happy tunes while she works...

Super Sierra and Helpful Hawa were stuck with me the most and we laughed and cried through it all...

and Reliable Rex, who has had me several times as his patient, asked to be my nurse so we could have some laughs again...

and perhaps the kindest of all was sweet Cheerful Chizo and Extraordinary Elysee who tenderly bathed me and changed my bed linens and dressed me and tucked me into bed with hugs when I could not do any of that for myself...the act of kindness of her lovingly pouring water over me and washing me was an act of service I shall never forget and I hope some day to bring her a gift to thank her (but I don't want to be a patient when I do it).

All of those beautiful humans took loving care of me just like they do all of their patients...I'm just so blessed to have them in my life.

It's not fun to empty a catheter bag or wake up a patient at 4 am for vitals but they did it in the gentlelest and most loving manner...and not once did I feel ashamed or stressed (ok maybe the morphine and dilaudid helped with that).

And my chemo nurses: Dawn, Ledi, Kim, Haley, Andrea, Sammi, Aaron, Maria, and a few my tired brain are forgetting are incredible as are my nurses that help my doctors, especially sweet Jackie.

Without them this journey would be so awful...but they make me feel special...like I count...like they care and love me...just as I care about and love them.

Recently I had an experience that reminded me that sometimes we touch lives in ways we never expect or know. Sometimes we matter to someone who may not necessarily be friend or family but is someone you interact with that thinks more of you than you know...

I frequent the Whataburger by my house enough that I have made friends with Radiant Raphael. I'll call her RaRa. We chat when the order line allows and a few years ago I told her I have cancer. She's a doll and she always is smiling and cheerful. But I went on a diet and gave up my Whata and my Diet Dr Pepper's so I hadn't been to that Whata since March.

I pulled up and paid. RaRa wasn't working the line that day. But she was there.

And she saw me through the window...

And she screamed...

And ran outside...

and opened my car door to jump in and hug me...

with tears streaming down her face...

because she thought the worst had happened to me since she hadn't seen me...

her loving and caring brought me to big ugly tears...

I mean a very ugly cry...

because this incredibly sweet lady cared enough about me...she has hundreds of people she helps and serve each day and yet she had noticed I wasn't there...and it affected her.

We go through our days in such a hurry sometimes we don't always see the ways we affect the others we interact with.

Whenever I go through the line I always ask for her and say hello if she's not working the line...so I notice HER and I am grateful she notices ME...

It's all just a reminder that we need to take the time to get to know the people that God puts into our paths...

So when you find a server at a restaurant you like ask to be seated in their section (your tip might be what let's them pay for insurance that month)...

or when someone gives you great service at a store, or the hospital, or like today at the dealership for my car write an email to let their boss know they made a differance...their boss might do something in return for them doing a good job (I know this for a fact as far as the hospital goes...)

fill out that survey that asks you how someone did...it might get them more pay...

tell the cashier checking out your groceries that her hair looks cute...because she may have gone 5 hours on her feet with no one saying something nice...

for years now my Marvelous Mel always makes us say hello to the person next to us on our bikes before we start spin class...over the years the people next to me are some of the dearest humans in my life.

3 years ago when I was about to start chemo they were the ones who all showed up in matching t-shirts with my name on them and had a celebratory lunch with me...

we laugh, we cry, we drink, we eat and we love each other as a little tribe of humans who are very happy that we sat next to each other on a bike.

One of that tribe has moved far across the ocean and tomorrow I get to see her once again before she heads back...we connected the day I sobbed on my bike thinking about my mom and it moved her to tears and moved her enough to call her own mom just to tell her she loved her...and I miss her each time she goes back but I'm grateful that despite a time difference i know she is just a message away...and I love her dearly...

one of that tribe presents a tough front but I know deep inside she's a sweet marshmallow and is a very loving woman who cares and loves her friends deeply...and I have a very soft blanket to prove it...and she makes me smile and laugh and I love her...

one of that tribe has confirmed his true gender and it has been an honor to watch his transition...I love him and I'm honored to have been a small part of his journey as I supported him from the minute he said he was going to be his true self...

one of that tribe is our social director and can always be counted on to bring us together and to keep us informed about when another needs some extra love...and she never fails to give me things to remind me I am strong---even if it is just a coffee cup (but a coffee cup I must drink from each time I have chemo)...and each time I hold one of the special coffee cups she has given me in my hands I am reminded that she loves me and I love her...

and one of those beautiful humans is a woman I admire so much for her loving heart...and years ago we began a little tradition of whenever we were in yoga and could be next to each other we would lay in savassanah and hold hands (and often cry) knowing that we are two Mamas in this world who have found another woman who feels the same feels...and I do love her and her children so very much...

I've met so many incredible people at Revolution that I feel blessed to just be a part of the tribe...instructors who have become family to me...staff that are real friends...fellow riders/yogis that are very much a part of my life.

So that girl next to you sweating it out on the elliptical? Say hi and tell her she's doing great...

that guy next to you on the treadmill? smile...he might be your next date...

that lady who always seems to end up next to you at yoga? maybe God has her do so so you can become friends...

not just when we workout...but in every day life...a little kindness and a smile might just be what that person ahead of you in the grocery line needs that day.

One of the people who is dearest to me used to work for my radiology oncologist. I went in there and sat around that waiting room so much we went from friendly to friends. She's important to me. I love her. Dr Angel might not ever realize that he helped me not only by putting me on the radiation table but also because he hired an angel to sit behind the desk and greet his patients. She's my sister of my heart...because the very first day I went in there she knew that the silly woman in glittery shoes was scared and needed someone to be cheerful and kind.

My dear Sweet Suzanne has been my friend since we were little girls at camp. And yesterday she took me to get my Keytruda infusion and cried with me while I talked to my doctor about how much I want to survive this. Her tears told me how much I matter to her...and how much she matters to me...

I have friends I've met recently and dear old friends who have known me a long long time...and I need all of them in my life.

I've had to learn to accept help and let my friends help me when they want to help me and not just be the person who tries to help everyone else.

I haven't been much good at helping others the last few years because I have been so in need myself.

I've had to be selfish in ways I never imagined I could be because of my illness.

I've had to put myself first at times I didn't want to.

But all of you have been there...

you are all #teamunicorn

When we are there for each other we are there for ourselves...

I've said before we are all given mountains to climb...but isn't it nicer when we have others on that same mountain with us helping us to make that climb?

When we face those mountains it's nice to have a sherpa or a guide...or just someone who will say "can I hold your backpack for you while we climb the next 100 feet?"

I don't need a team to cheer me...I need a team to cheer WITH...

So as I close this chapter of another year of my life I want to thank each and every one of you who prays for me, checks on me, drives me, picks me up and takes me places, sits with me in a waiting room, reads this blog or my silly FB posts, visits me when I am lonely, sends me texts to lift me up, hugs me, and makes room for me in your heart...

I can't do life alone...if I tried I would fail by day 2...

so love ALL the people around you and reach out and help someone because one day they will surely help you...

we only have each other

God gave us the gift of being able to communicate so we can be there for each other...

friendship is a blessing...

and I am beyond blessed...

Inspiration song: "If We Have Each Other" by Alec Benjamin...beautiful song about being there for each other...and it reminds me of my sweet Dreamy Deanna and I when we lay in savassanah at the end of yoga holding hands knowing that we are there for each other...

some of the lyrics:
The world's not perfect, but it's not that bad
If we got each other, and that's all we have
I will be your lover, and I'll hold your hand
You should know I'll be there for you
When the world's not perfect
When the world's not kind
If we have each other then we'll both be fine
I will be your lover, and I'll hold your hand
You should know I'll be there for you

Bye Darlings---when the world's not perfect and the world's not kind just know I'm there and we'll both be fine...thank you for holding my hand when I need it...even if it is just a virtual hand hold...

Monday, August 26, 2019

I Never Knew Love Like This Before

Hello Darlings...I had a scan the other day and then saw Dr. Rockstar today. I'll get to the results of the scan and what she said in a bit---yes, I am going to make you patiently wait and read all the garbage that is in my head before I tell you what is going on with El Diablo...so make yourself comfy and buckle up...

A few weeks ago when I was low I posted something on social media saying I was struggling really badly after chemo.

And you people came through for me...you sent me messages of love and support, you wrote comments that made me feel loved and stronger...the people in my life showed up for me and for that I am so grateful.

No warrior can go to battle alone---you can't fight all the giants without others to fight along with you and I'm so blessed to have friends and family who show up with their swords and pikes and fight along with me by keeping me safe and strong with their loved.

You have to have people who SHOW UP FOR YOU.

And you people show up in a big big way!

I can't thank you enough---because it is very easy for me to feel alone since I live alone, my kids are elsewhere, I don't have a man in my life and all I have is 3 cats to talk to and they are very sassy and unhelpful because they only want to be fed and petted.

I know I whine a lot about being alone and without love in my life.

I do truly feel the love you all give me and the support.

And as a dear old friend wonderfully pointed our the true loves of my life are my kids.

But I do get lonely...and many who tell me to "look at all the love you get from friends" have a spouse, partner, boyfriend or girlfriend, or are happy to NOT have a partner.

It's not the same.

And fearing that I might die without every knowing what real love feels like is a real fear that many of you can't relate to because you have love in your lives AND you aren't fighting an incurable disease.

So you only get to judge my struggle if you are single AND fighting to live.

So that's maybe 2% of you...cause most of you have somebody or you are not actively in a cancer battle...

for those of you in the same boat as me YOU GET IT...

Otherwise---set your judgement of me aside and think for a moment how it would feel for you to be told "you have stage 4 cancer" and NOT have the person you love at your side.

for 8 years now I have been alone...one relationship that lasted about 6 months when I was first divorced and then nothing...


Not one...

So PLEASE stop telling me that I have the love and support of all of my friends and that that should be enough.

Because it's not...

I do not want to die without being in love just once before I draw my last breath.

My first marriage was not a loving supportive healthy one...I got two great kids out of it but not a relationship with their father that was a good one.

I was so ready to invite in love and then I got sick.

So I have been in this battle without love or someone to say "it's ok" when I am crying in the middle of the night from pain or fright...the cats could care less if I am crying as long as I don't roll over onto one of them...otherwise...pffffft....I do get some rather good side eye from Angel but she's sassy like that.

So I'm alone and right now I'm not sure if that is EVER going to change but I hope it will.

Because I am fighting to live and I would really like to not spend so many nights alone in my chair...watching Bachelor in Paradise (and maybe we should dissect exactly why I am wasting 4 hours a week on that show...)

I've been blessed beyond belief to have my Aunt Jane and some other sweet friends who have been there for me when I have had surgery or chemo...I could have not handled all of this without them.

And I could not have made it this far without the love and support and faith of all of you who are part of #teamunicorn

honestly I could not do it.

From the beginning, when I knew there was something wrong inside my body, I never imagined ever ever ever that I was going to hear the words "you have uterine cancer".

But I did.

And then I did the only thing I could...I fought...

I got my diagnosis and about 10 days later I was in surgery having all of my female organs cut out of me.

All of them.

But the cancer had spread and these damn lymph nodes in my pelvis (and later in my neck) had cancer but could not be removed because they are too close to the aorta.

And I like my aorta.

And there isn't a surgeon out there who wants to try to remove them.

They seem to have an aversion to operating on a patient who might bleed out on the table if you accidentally nick her with a scalpel.

So those lymph nodes have been absolute jackasses of lymph nodes and have caused all sorts of trouble and despite giving me enough radiation where I should basically glow in the dark and enough poison to take down a dozen horses they still have cancer in them.

So every other week---until science can find a new drug that kills my form of cancer---I get poisoned just so it won't grow.

If I look at Dr. Google I see that I don't have much of a shot at being here in a few years and I probably shouldn't buy a new car because I might not get to drive it very long.

That's what Google says.

I say "not today El Diablo".

Because you know what I have that Google doesn't know about?

My faith and the faith of all of you.

I have #teamunicorn  to pray for me and pick me up when I am crawling on the ground and can't go on.

So I pray...and every time I do the first thing I do is thank God. And then I tell him to please use me to teach my doctors how to save other women. Because I want to be an instrument of change and wellness.

And then I do every damn thing I can to make my body a healthy machine so I can fight this stuff.

I recently found a wellness program called the FASTer Way to Fat Loss. I've lost some weight but more importantly my blood pressure is down and I finally don't feel like crap 28 days out of 30 each month. I won't go into it here but message me if you want to know more because one of the main components of it is intermittent fasting and Dr. Rockstar thinks it is a good idea for me. There is some evidence it might help my body get stronger to fight this damn stuff.

I've had so many people tell me "but you don't look sick" or "I can't believe you have Stage 4 cancer because you look so good"...or they think because I can climb on a spin bike I'm not that sick...

Trust me...I have Stage 4 incurable cancer.

It hasn't gone away.

I have it...I just have hair and I'm fat so I don't look sick.

But I'm just as sick or maybe sicker than those women you see with no hair or who are bone thin.

Skinny and bald are not the only signs of illness.

Trust me I'd love to have lost weight through all of this but the combination of menopause + steroids = fat me.

And I also take it as a great compliment when people say it...because I know they say it because they are used to seeing cancer patients in a different light. And when I am in the Cancer Center and I see so many people who are so much sicker than me I see why they say that.

But I decided from the start that I wasn't doing this cancer stuff in the way that other do...I was going to do it my way. And I'm blessed that i found an oncologist who is so on board with that that she lets me do all the crazy things I want to do.

Today I was in the chemo chair at 3:30.

And then I was on a spin bike at 5:30.

Because I am a badass. (and because I desperately missed my spin instructor the Marvelous Mel---perhaps I have mentioned her about 3467 times...)

And I got on that bike to prove that I can't let cancer stop me from doing anything unless I let it.

My spine on the other hand has its own ideas and it can manage to stop my world...and lately it's been acting up because it thinks El Diablo has gotten too much of my time and energy and it wants to get in and act like one of the bad guys.

sciatica---so much fun....but let's hope it's just that and not another bad disk because frankly I don't have time to deal with more spinal surgery...

God gives us all challenges.

And it's in how we meet them that define us.

There are some challenges that seem like the end of the world until we are faced with a mountain and we had only been looking at hills.

I spent my life with a smooth flat road, the occasional bump, and a few hills.

And then God asked me to climb Everest.

And He said "you can do it"

So I got me some sherpas (my docs and nurses) and gathered all the things to climb and got myself to base camp and literally almost fell apart.

Because base camp was surgery and then chemo.

And you can't get to the next higher camp unless you can acclimate to base camp. You have to survive base camp first.

So I got to the next base camp and had a few more things thrown at me (25 rounds of pelvic radiation, 3 brachy treatments, 30 more rounds of radiation). But I got through it and acclimated. All was well...let's move on to the next camp...

And then I had hernia surgery...and spinal fusion surgery...and the cancer got active again and I had to have chemo again. Surgeries I can get over---you have them, there is pain and then you are done. The chemo going on and on and on and on...that's the hard part.

I felt like crawling back to base camp but i was halfway up the mountain.

And those are those moments when you ask yourself: do I go up or do I go down.

And I had to keep climbing...

and so now I'm still climbing...I think the top is up there somewhere beyond the clouds I just can't see it yet but I know its there.

And for me the top might not ever be that I am declared "No Evidence of Disease"...it might just be that it is managed and I survive for more time.

(And maybe in a year or so I will buy the new car but hey Beyonce the 4 runner is fine so maybe I'll paint my house instead)

But the point being that running back down the mountain would be easy and I need to do hard things so I can get to the summit.

Because up there is a view I haven't seen and I think I need to see what it looks like from the top.

(and no, I will never ever ever climb Everest for real because I hate the cold and heights and sleeping bags and I like hotels)

Life makes us climb places we don't always want to go.

I don't know why God has allowed me to have this disease.

Please note I said "allowed"...

not "given"

not "punished"

but "allowed".

But I know He did because I am going to teach my doctors things about how to treat UPSC and how a cancer patient can do the things we don't think cancer patients can do. And how I can inspire others who are on a cancer journey or just struggling to keep going.

To keep climbing...

To look for the summit and claw your way there if you have to.

So now that I have gotten the stuff that's in my head out here's the part you have been waiting for...


First---CT scans are super fun


But I got to meet up with my imaging buddies Rod and Debbie and I drank the magic potion (barium) and had the iv and we took some images.

And then I went and had a massage and had dinner with Kute Karen 2 who knew I needed a good dose of Flower Child and laughs.

And then the next day as I obsessively checked my portal Sweet Suzanne took me to lunch and I got more laughs and love and began to breathe.

And then I went and did a double yoga class with Heavenly Skye and right after I got into my car I checked the portal again and ran in to hug her...

because as far as my limited medical knowledge was that scan was damn pretty.

So I kept busy and had some more girl time with Vibrant Vicki, Kute Kaelyn and Marvelous Melonie and some excellent wine from CabeRene and a delicious dinner at George's Pastaria that reminded me that I don't get to eat there often enough...(if I sound like a commercial it is because it is---you people should eat there).

And yesterday I flowed with the Marvelous Madonna and had my sweet Divine Deanna next to me and breathing came with a sense of power and strength...just like the yoga class.

But I wanted to wait until today when I saw Dr Rockstar to hear her thoughts on what I thought looked like the kind of scan she might want to put on her refrigerator along with pictures her twins made.

And it turns out that yes, she is damn proud of that scan too...it might just be on her fridge with a magnet...

because those 5 pesky lymph nodes?

they are finally BEHAVING

two have decided to become stable (they aren't NED (no evidence of disease) but they decided not to grow at all). The other 3 grew so slightly she is not even sure there was any real growth but it could have just been the way I was laying on the table or it was measured.

No other metastasis...

there is a kidney stone but we can talk about that later.

What does this mean?

This means despite being down a drug (no more cisplatin) that my body is fighting and holding its own.

I'm not NED...I'm not cured...I still have to have chemo...

but at least for now the cancer seems to be stable and behaving.

Like a dog in it's crate...it might want to get out and run amok but for now it's not actively growing and causing trouble and knocking over things and stealing food...

I'll have chemo every 2 weeks still...

and I'm going to keep on my FASTer Way plan because my blood pressure is lower than it has been since I was diagnosed (I'm hoping to go off the diuretic) and I feel GREAT and I am convinced this plan has something to do with it. (like I said message me to learn more)

I have a happy oncologist...and she hasn't talked to Dr. Angel yet but she's pretty convinced he will be happy when he sees it too...

We did a lot of hugging and crying and laughing today...Dr. Sweetmeds was super happy and she is the one who doses out the poison so I know she is proud that it's working for me.

The biggest thing I have in my corner is my faith in God and the support of all of you.

I could not do this without you.

I can't do it alone and I am so grateful to have all of you to lift me up and do all the the loving things you do to make me feel better and to continue to fight.

When life makes you climb the mountain it's really good to have some people to climb it with you.

I don't have that loving partner in my life...but I do have all of you people and that's more than a lot of people can say.

And who knows...maybe a gambling sort of man will take a chance on a crazy blonde and be willing to climb Everest too...

Thank you all for making me feel so loved and blessed...you people show up deep and strong...and some of you are literally friends who are family to me (too many to name but you peeps know exactly who you are) and I am beyond blessed.

#teamunicorn hit a homerun today---we haven't won the game yet but to me this is a loaded bases homerun...

Love is not just between 2 people.

Love is what you put out in the world with no expectations of getting it back but you show up for others and you do good.

Love is supporting someone when they are so low the can't get up so you carry them.

Love is taking a moment to pray for someone.

Love is easy to give and hard to get....

But love can be found all around you...and you people have surrounded me with so much of it I don't feel I deserve it but I will take it (just like a free dessert at a restaurant). And like that free dessert (which I will eat) I will take what is given to me.

I love you all...now go hit your knees and thank God for what he has done in your life and mine...

Inspiration Song: I Never Knew Love Like This Before by Stephanie Mills....because honestly I never knew so much love until all of you showed it to me and I am especially feeling God's love and I never have felt it more strongly. And because this season on the amazing show Pose (you should be watching) they featured this song in the most incredible way.


I never knew love like this before
Now I'm lonely never more
Since you came into my life
You are my love light, this I know
And I'll never let you go
You my all, you're part of me
Once I was lost and now I'm found
Then you turned my world around
When I need you, I call your name
â??Cause I never knew love like this before
Opened my eyes
â??Cause I never knew love like this before
What a surprise
â??Cause I never knew love like this before
This feeling's so deep inside of me
Such a tender fantasy
You're the one I'm living for
You are my sunlight and my rain
And time could never change
What we share forever more, ooh
I never knew love like this before
Now I'm lonely never more
Since you came into my life
â??Cause I never knew love like this before
Opened my eyes
â??Cause I never knew love like this before
What a surprise
â??Cause I never knew love like this before
You are my love light, this I know
And I'll never let you go
You my all, you're part of me
Once I was lost and now I'm found
Then you turned my world around
When I need you, I call your name
â??Cause I never knew love like this before
Opened my eyes
â??Cause I never knew love like this before
What a surprise
â??Cause I never knew love like this before
Inside of me
I never (Never) knew love like this before
Opened my eyes
Never (Never), never (Never)
Never knew love like this (I never knew, I never knew I never)
Never (Never), never (Never)
Never knew love like this (I never knew, I never knew I never knew)
Never (Never), never (Never)
Never knew love like this (I never knew)
Never (Never knew), never (Never)
Never knew love like this (I never knew)
Never (Never knew), never (Never)
Never knew love like this (I never knew, I never knew I never knew)
Never (I never knew, I never knew), never (I never)
Never knew love like this (Never knew)
Never (Never knew), never (Never)
Never knew love like this (Opened my eyes)
Never (What a surprise)

Bye Darlings---I never knew love like this before...from God and from you!!!!

Sunday, August 4, 2019

Breathe (2 AM)

Hello Darlings...

Here's an update on me and then we will get to my musings...last time I had chemo it went smoothly but it still hits me hard emotionally each day when I get hooked up to the poison....

It has taken me a while to write this blog...I have started and stopped it any times...I have deleted things and even changed the scope of it. Sometimes my blogs literally write themselves with the words pouring out from my fingers but this time I struggled. And then the other day I realized that I was forcing my writing and not letting it be organic. So here, after months of not writing, is what my heart has unfolded...

Back in April (the day after Easter) I was having chemo as usual except it wasn't chemo as usual---I had an allergic reaction to the chemo drug cisplatin.

I thought it was the kale I was eating.

I honestly want to be allergic to kale because I think it is vile and the only place it belongs is on a salad bar---as the filler to decorate between the bowls.

I was eating lunch and Aunt Jane had looked down to read something and I felt my throat closing up (yup I was eating kale---because I stupidly got the wrong thing to eat...) and my face started to burn.

Sure enough I was having an allergic reaction...

I'll spare you all the details but I will say that if you are ever going into anaphylactic shock you will think you are crazy or having a stroke.

I felt like both...

my nurse pumped me full of steroids and my doctors came running...I couldn't talk (one of the fun things that happened...imagine me---not able to talk!).

Once the steroids did their job I looked at Dr. Rockstar and said:

I'll do anything for your attention!

She gently reminded me that there are better ways to get to see her...like walking down the hall...

I told her it was kale but she vetoed that idea and said it was the cisplatin.

She's always vetoing my ideas---like when I wanted her to also be a plastic surgeon when she did my hysterectomy...or my trying a crazy diet that had a lot of supplements that would have been bad for me...or when I want to have Botox in the middle of a chemo round...or my not wanting to take a pill 3 times a day.

But hey she has all those fancy medical degrees and I put feathers and sequins on people so we will roll with what she says...

And I'll also mention that if your throat is closing up and you are red with the hives it is NOT the time to get up and go to the bathroom (I got fussed at for that).

So the next chemo 3 weeks later I got to load up on steroids and Benadryl the day before (making me tired yet wired) and I got two nurses to myself. The plan was to give me a tiny amount of cisplatin in the first infusion and then give me another bag with more of the drug and then another bag with a higher dilution until they reached my usual level. Dr. Sweetmeds called it a "step up" to see if I could tolerate the drug at all.

Because I kinda sorta maybe probably need the cisplatin.

JayVee was playing wingman that time and she got to experience what I must be like if I was 3 margaritas drunk because they loaded me with Adavan. My nurse pushed it in my port and it hit me like a good night at Club No Minor (an infamous TexMex place with margaritas so strong that you hurt for days if you drink 2).

Apparently I was all kinds of goofy but I can't remember it...and I'm sure JayVee and my nurses were wanting me to just go to sleep and stop being a clown...

Once it appeared I was in the clear (with the last bag with the full strength dilution) I sent JayVee home (because she had hella traffic to face) and I thought I might nap.

But nope...

the cisplatin was not done with me.

20 minutes in to the last bag I started turning red and feeling the itching and yelped for my nurses who had stepped away for a moment (I'm sure to have a much needed break from a woman who was claiming to really be a unicorn...they are used to my nonsense but that day it was nonsense on steroids---literally).

Again chaos ensued, steroids were loaded into me and Dr. Sweetmeds declared that all platinum based chemo drugs are now off the table.


As a result of all this nonsense I gained 10 pounds thanks to all the steroids and I'm terrified that without that drug the cancer will grow.  I am, however, blessed that my nurses were quick and I avoided having to be intubated and hospitalized because at the very moment I felt it coming on I screamed for help.

And that time I didn't eat kale so I guess I am not allergic...but I still think it tastes like dirt and I refuse to eat it....

Dr. Rockstar is optimistic that Gemcitibine alone will keep the cancer from growing and will keep my cancer stable (it won't go away but hopefully won't grow) and now I have to go back to chemo every other week.

It won't cure me but it might give me time...

The good news is that maybe my kidneys won't be damaged (cisplatin can do that) and maybe my neuropathy will improve since I am off it (the tingling and numbness in my fingers and feet is relentless). And with only one drug to infuse each time I am in and out of the cancer center in far less time so that is a plus. And my bone marrow is not being stressed quite as much so maybe my white count will finally get into a normal level.

I have to find some sweet in the bitter with all of this...I can't just let myself be terrified of the bad stuff because that is giving in to El Diablo.

So it's been a crazy few months with the chemo and now I will soon have a scan because we have to see if the Gemcitibine will keep the cancer from growing further.

And now that I have updated you and because I need a therapy session, you get to get inside of my head...

I recently found a meme on social media that said:

"Sometimes you have to let go of the picture of what you thought life would be like and learn to find joy in the story you are living"


that is my life...

I always figured that by the time my kids were grown and off to school or on their own I would have a life with the man I loved and we would travel and do hobbies...

But I left the man I was married to because we no longer loved each other in a way that was healthy for us to stay together.

And after my divorce I figured I'd be alone a year or so and then maybe I would find another man to love and I'd have a great life with him.

Basically I imagined that some form of a man who was a combo of Dave Grohl and Bradley Cooper would come along and sweep me off my feet and take me to Italy where my body would suddenly morph into that of one of my spin instructors and I could eat all the pasta I wanted...


Instead I got cancer.

Stage 4 incurable cancer.

There is no man.

And I have cancer.

I've spent enough years alone to know and love myself pretty well so before I was diagnosed I was more than ready to meet someone and get to know what it feels like to be loved.

But that is not the path I am on.

Recently I was driving a dear friend home after spin class and we were discussing life's struggles and how we manage.

As we were driving down a street I noticed that the sidewalk in front of a building we were passing meandered and jogged about and was not a straight path because of trees planted along the street.

There was no way to walk on that sidewalk without having to move left and right---you can't go straight.

I told her that life was like that sidewalk---it's not a straight path but rather one that makes us go different directions to get to the end. We have to move a little right and left to get where we are going.

The path I am on has twisted and turned so much I sometimes forget to move forward because I am too busy moving only right or left to stay on the path.

But it is a path I must go on and I can't change it.

I'd prefer not to have cancer but the truth is I do and nothing will change it.

So I have to face it but the only way to win with it is to not give in to it and to breathe and live.

And find joy in what it is teaching me and bringing me.

I have found joy in simple things now...and much more joy in sharing love and happiness (and food) and truly finding my love for yoga and spin.

There are days I don't want to exercise...but then I think of what a privilege it is that my body still works well enough for me to get on a spin bike or a yoga mat and move.

I could be so sick that I can't do much so I do what I can. And I have learned these past few years that having the ability to move and exercise is something that not everyone in my position can do (my doctors are baffled at my insistence to do yoga and spin but they have given in to my demands that I get to and have discovered that I am better physically and emotionally and mentally because of it).

I've had surgeries that have kept me from being able to exercise---a hysterectomy with a 10 inch vertical incision, a hernia so large it was like a 3rd breast and that needed fixing, and a spinal fusion surgery that was so painful I would not wish it on my worst enemy.

My knees are bone on bone and I need a replacement but I can't stop the chemo long enough to do so (because my body won't heal properly if I am on chemo and I am an infection risk).

and I have sciatica that now makes me feel like I am a grumbly 80 year old man...

But even with my bad knees and bad back I can get on a bike and ride to a beat or I can push my body into a yoga pose and stretch and move with wobbly grace.

There might come a day when I can't do that.

So for now, bad knees and all, I will choose to move.

And I find great joy in it.

Recently I hit the mat and my beautiful yoga instructor, the Heavenly Skye, helped me see that it was more important what I CAN do than what I can't...so I flowed with delight in what I could do and found forgiveness in myself for not doing what I could 2 years (or even a year) ago.

I don't ever need to be able to do Bird of Paradise pose but I do love every wobbly second of stretching into Half Moon and feeling like I am dancing...

I can move...and THAT is what I should be grateful for!

So many times during yoga I find myself in down dog and while I am worrying how my feet need a pedicure I also find my breath and take in the fact that I am there...on my mat...and I am alive...and I probably need a pedicure...

But here I sit whining on my blog about all the bad stuff...but it won't fix my knees, or being alone, or the pain in my hip (back), or cure my cancer...

Because whining never solved anything and me telling you all the things that are currently wrong me doesn't change it.

I can choose to wallow in it or I can choose to stand up and keep fighting.

I struggled recently after one of my chemo infusions feeling like all the "fight" had gone out of me and I just wanted to stay in bed and cry and feel sorry for myself.

I had a full on pity party for myself complete with ticker tape parade and balloons and snow cones...it was gloriously pitiful and I wallowed in it for a few days...I really had the "God you can throw rocks at me but stop with the boulders" mentality...

And while I was battling this depressed state this warrior wanted to lay down her sword and just give in to all the pain and the problems and I felt like I had no real life...just an existence...

But then I realized that I never want to give up and give in.

So I picked up my sword again (after a lot of love and support on social media from many of you) and I cleaned up after the pity party and forged ahead on my path.

Giving up the fight only lets El Diablo win and I fully believe I have a life to live if only science can catch up to me and some attention can be given to my kind of cancer---to help me and the other beautiful women who have UPSC and other cancers (especially gyno cancers).

I have to believe that a cure is possible..and if not a cure a way to contain this cancer so that I can go on living without having to risk my bone marrow and neuropathy.

I have to keep my body strong enough to handle all the poison thrown into me and to be healthy enough to fight off all the opportunistic infections I seem to get due to low immunity.

I can't change what has happened to me...

I have cancer and nothing can or will change it.

So I need to just slow down and breathe and stay as positive as I can.

I try to be happy and positive...I try to not complain about all that is wrong with me all of the time but rather reflect all the things that are RIGHT with me.

But sometimes, like I did a few weeks ago, I have some dark days...

And darkness can swallow you up if you don't start looking for the light---even if the light is from a firefly and not from a lighthouse...

And some days I am a firefly and my light shines sweetly and softly and other days I am a big shiny bright lighthouse with a giant bulb that reaches out into the fog and guides others to safety.

And some days I am just dark...but thankfully those days are few.

Life puts us on a path---it winds and twists...it's dark and light...there is sunshine and tunnels and moments we lift high like balloons and moments we feel we are buried with our troubles, griefs, and bad things...

But we move forward...moving a little left and right when we need to...but in the end we get to our destination.

I'm not on the path I envisioned...

I envisioned one that was certainly straighter, smoother, better lit, with someone by my side...

But that's not my path...

the bumps have made me fall down...

the cracks have swallowed me up at times...

the turns have made me dizzy...

but I am still on the path...

I still go on...

and I am grateful for what this life is teaching me...even if the lessons are so so very hard.

So my friends there you are...this is what has happened in cancer world...and this is why I have struggled to find words to put here for you.

I am walking the path...and I am so lucky that along it I have all of you to join me for the walk...

the path is not straight but we can find our way if we just keep going...

and we breathe...

Inspiration Song: "Breathe 2AM" by Anna Nalick...a song I recently re-discovered and is now played often when I need to remind myself that things don't always go as we planned...the last part of the song hits very heavily with me and I truly feel her words are what I want to say...

There's a light at each end of this tunnel, you shout
But you're just as far in as you'll ever be out
These mistakes you've made, you'll just make them again
If you only try turning around.
Two AM and I'm still awake, writing a song
If I get it all down on paper, its no longer
Inside of me, threatening the life it belongs to
And I feel like I'm naked in front of the crowd
'Cause these words are my diary, screaming out loud
And I know that you'll use them, however you want to
'Cause you can't jump the track, we're like cars on a cable,
And life's like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
And breathe, just breathe
Whoa breathe, just breathe,

Bye Darlings....these words ARE my diary and I am grateful you read them...and yes sometimes I feel naked in front of the crowd as I put these words here...use them however you want to and remember to just breathe when the path makes you turn...

Monday, June 10, 2019

What I Did For Love

Hello Darlings...

Today would have been my mother's 75th birthday. She's been gone now for 14 years and I miss her every day. I'm sure if she was here she would have been the most gorgeous amazing 75 year old woman on the planet. Today I dedicate this blog to her...and what she taught me...

When I was about 14 years old my mother took me to Jones Hall to see a musical.

Before that day I had only seen musicals in a movie theater...and I loved them.

If the movie had people spontaneously bursting into song in the middle of a scene then I was all for it.

I love Mary Poppins, Cinderella (that one was on tv), Chitty Chitty Bang Band (minus the part about the child catcher),  and most especially Camelot (plus a whole lot of other Disney etc).

My mother LOVED musicals.

My father would take her to see shows and she would bring back the programs and I would study them like they were a text book.

She would tell me the stories of the show, describe the costumes, and play me the music.

When we lived in the Kingsville there was not a lot of live theater to take a child to save for the "Follies" her women's club put on each year and I lived for that---singing, dancing, costumes...I loved it.

So when we moved to Houston my mother finally had the opportunity to take me to see a musical on the stage.

It was "A Chorus Line".

She saw it on Broadway when it first opened and I had wanted to see it every since she told me that it was a show about Broadway dancers who were the hard working men and women who were in the chorus.

I remember sitting in my seat with great anticipation---and very excited that that this was something my mother and I were doing without my brother and sisters.

The orchestra tuned up, played a bit of overture and the curtain came up and there were the actors singing and dancing.

I was mesmerized.

They were right in front of me putting on this amazing show.

The show went on and each actor tells their story through song and dance and I sat on the edge of my seat and probably did not draw breath.

Near the end of the show one of the characters falls and hurts himself and when the others are asked by the director what they would do if they didn't dance the character of Diana sings "What I Did For Love".

At that point during the show I began to cry so hard I slipped out of my seat.

I was completely drawn in by the story and the music and the dancing and the beauty of the song.

And when the song was over and my mother looked at my tear streaked face she said:

"I think we have found something you truly love"

and at that moment my deep and abiding love of musical theater was born.

Jones Hall.
Sometime in 1978
5 seconds in to What I did for Love

After that my mom knew she had someone to always see a show with and any time something wonderful came through on tour she would take me and when I graduated she took me to New York so I could see a  few Broadway shows before we went on to Europe.

We saw "Cats" and "Starlight Express" and "Dreamgirls".

I loved them all.

And as I looked around at the various marquees and saw the names of more shows I said "I want to see that one...and that one...and that one...".

In other words---all of them...

After that my mom would occasionally treat me to trip to NYC to see shows and when I had a daughter of my own and she was old enough we took her there to see shows as well.

And each time they dim the lights, and the orchestra tunes up, and the curtain rises I feel the blood in my veins pulse harder and I sit and soak up each second of it---and each and every time at some point I cry because I am overwhelmed with love for all of it.

In my late 30's and early 40's I finally got to go on stage myself.

The Junior League presented plays for young students and I helped build the sets and move them my first year and after that I acted for a few years (badly I might add but hey my audience was kindergarteners so I didn't have a high bar).

My mom would come and watch me and would cheer loudly----the only person cheering loudly as I was usually cast as the bad guy.

And then I started working on productions at the school and found that my real love was really doing the costumes more than being on the stage myself.

In 2005 GOTT (God Of The Theater...aka the best theater teacher/director in the world) asked for help with "Music Man" and I lied that I could do it.

What the hell?

I didn't know how to costume a show but I figured it out as fast as I could.

And in the middle of it my mother died.

Before she could ever see the show...

and I almost quit because of her death but I realized that GOTT and the kids needed me to get out of bed and go finish the show.

So I did.

For her.

And for me.

And now I get to do it all the time and each time I love it more and more and I love the challenge of trying to take GOTT's vision and put it on the stage in a beautiful and creative way that tells the story.

I put more into it in hours, sweat, and tears than I am paid for but it is all so worth it.

I do it for love.

Because you have to love it and have a passion for it or what you put on stage would just be mediocre.

I love each sparkle, each bow, each feather, each hat...because inside of them is a child who is doing their best to shine on that stage.

And I love that I get to do my job with a man who is one of my very best friends and someone I dearly love and that I have such fun doing it.

And a few years ago when my team of costumers, hair and makeup girls (and an incredibly creative mom who made armor out of junk from the dollar store) won the Tommy Tune Award for costuming Pippin I so wish my mom had been there with me to see that what she set into motion became my passion and that I finally found a way to take that love and creativity and use it for something.

We find our passions in life by stumbling into them sometimes.

And sometimes we are lucky enough to get to participate in those passions and not just watch.

My mom taught me how to cook, how to dress, how to decorate, how to throw a party, how to raise kids, how to make a bed, how to swim, how to put on makeup, how to love God...and how to love musical theater.

And now, thanks to my mom, I get to see the lights come up, the curtain raise and there on the stage are actors standing and singing and dancing in something I (or my team of girls) chose to put up there. And the actors are kids I love with all my heart.

And there is never a moment that I am not reminded of that young girl sitting in the dark in Jones Hall who cried when "Diana" started with "Kiss today goodbye..."

I see my life as a musical....

I look at my life now and I see that I am in the second act of my life.

The first act is one of childhood and motherhood and marriage. It had all kinds of silly songs and dances, bright costumes, and just before the curtain for intermission there was a cliffhanger with a newly single woman who was facing what was ahead.

And this second act is one of courage, bravery, and facing a battle with a demon.

And like musical theater there will be a big huge ballad before the final showstopping number.

I'm not sure what that ballad will be but it will be one of victory and survival and life because this show won't end with me going away...it will be a happy ending. And the show will go on for many many years...

And I feel my mom with me urging me to sing louder, dance harder, act fiercer, and shine brighter.

So I'm gonna sing louder (which means writing my blog more)
Dance harder (my  workouts...my mom loved to workout)
act fiercer (be stronger as I fight this)
and shine brighter (try to spread as much love as I can)

The stage is where I most feel at home.

I love the way a stage feels to stand on...I love looking out at the seats and seeing all the chairs for the audience to sit in...I love looking at the pit and knowing that there will be musicians down there to play the music. I love the buzz of the dressing rooms as the actors get ready and the last minute panic before a show when a button breaks or a costume rips.

I love that magic will happen on that stage and I want that magic in my real life so I am so glad I get to participate in making art in my own little way.

Life would be so much better if everyone just spontaneously broke into song to explain things or move the day along, don't you think?

I don't have a lot of lessons for today...just stories to tell as I spend today thinking of my beautiful mom and the gift she gave me when she took be to see A Chorus Line all those years ago.

Theater tells a story...and our lives are stories.

Sometimes there are bad guys...sometimes there is love....sometimes there is a group of friends who band together to do something good for something or someone else...and sometimes there is an act of bravery.

I've experienced all of that---people who have failed me...people who have loved me...people who I have worked together with on something and now my act of bravery of facing stage 4 cancer.

I miss my mom every single day but I am so grateful the lessons she taught me. And I'm so blessed that what I love is now what I do for and out of love...

because love is never gone...and even though she is not here she is not gone from me.

If you have a passion in life find a way to put that passion into your daily life and let it lift you up...let it carry you through the hard parts of life.


whatever your passion is.....

for me it's musical theater...for me a sequin glittering in the lights is a beacon...and a song is a battle cry...and a dance is my heartbeat...

All I do I do for love...not to make others love me but my love for others...what i do is born out of my love for making others feel loved, special, happy and joyful. I wake each day with the desire to bring light and good into this world and to clear away the bad and the pain.

I live to love others and share love...and I do not regret if I look like a fool doing so.

Some may find me to be too much to take and that's fine....not everyone can appreciate a clown in an overload of feathers and sequins but that is what I am.

My mom taught me to love and to share it. So I do.

So thank you for letting me put this on stage today and for sitting in the audience to watch...

I'm about to break into song (more writing to come) so stay put...

I'll try not to sing off key...

Inspiration Song: "What I Did For Love" from the musical "A Chorus Line". Because it set me on the path I am on and brought me love...and all I do is for love....

Kiss today goodbye
The sweetness and the sorrow
Wish me luck, the same to you
But I can't regret
What I did for love, what I did for love
Look, my eyes are dry
The gift was ours to borrow
It's as if we always knew
And I won't forget what I did for love
What I did for love
Love is never gone
As we travel on
Love's what we'll remember
Kiss today goodbye
And point me toward tomorrow
We did what we had to do
Won't forget, can't regret
What I did for love
What I did for love
What I did for love
And I won't forget
What I did for love
Love is never gone
As we travel on
Love's what we'll remember
Kiss today goodbye
And point me toward tomorrow
We did what we had to do
Won't forget, can't regret
What I did for love
What I did for love
What I did for love
What I did for love

Bye Darlings...my mom was a fabulous woman who taught me to be me...and to spread love...I hope you found some love here today...and thank you for putting up with yet another of my therapy ramblings!

Sunday, April 7, 2019

Under Pressure

Hello Darlings...

Today before a little storm blew in I was looking out my back door and noticing just how dirty the rug on my back patio was...

It needs a good pressure washing to make it look fresh for spring.

Now why am I telling you about my dirty patio rug?

Well it all ties in to spin class.

(and if you know me then pretty much everything ties into spin class)

So today I'm in my #sundayservice spin class with my bae (otherwise known as HotChocolate2 or Jalapeno's Daddy) and as usual he is serving up some soul searching advice along with tapbacks and climbs during the spin dance party he created.

And he says:

"Use the pressure you are under to become your power..."

And all kinds of light bulbs start going off in my brain.

not because of my dirty patio but because of LIFE

Before class I was feeling the pressure of the week ahead of me...and the pressure of being someone who is ill but still needs and wants to function as a non-ill human.

And sometimes I feel like my life is as messy as my patio.

Underneath all the grime that has collected there is something that just needs cleaning and not throwing out.

So when he said that and all those fireworks started in my head I realized that right now God is pressure (or power) washing me to clean me up.

He's let me get grimy and dirty so that He can wash me clean.

The pressure He is putting me under will ultimately BE MY POWER and my mess will be my message and one day I will be clean and shiny and new again.

God does that with all of us.

He has us experience things we don't ever imagine we can withstand (have you ever felt how stingingly hard water comes out of a pressure wash hose?) and yet once we go through the process the dirt and grime that has gotten in the way is gone and once again we are refreshed.

I've got friends who are going through terrible horrible very hard things...children who they have lost to accidents, parents who are ill or dying or have died, divorces, illnesses, etc...

none of us gets through our days without getting a little dirty from the messes in our lives.

And for some of us, especially those who's children/grandchildren are now in heaven, we will never be the same. You can't experience that without losing part of yourself.

That patio might get clean but it won't be the same...

Losing a child is an unimaginable burden to bear.

But even those precious moms and dads and grandparents will withstand the pressure of the process because in the end God is still with them and love and lessons will be found.

Right now I look at my life and say "Gee thanks God for giving me Stage 4 cancer...and painful neuropathy in my fingers and feet....and that I am alone without a partner in this process....and that my cancer is classified as "incurable" and that I have to suffer with chemo every 3 weeks...chemo that continues to destroy the nerves in my hands and feet and spine and my kidneys and that bonus round of radiation fun and the extra bonus round of a shredded spine. Thanks. Thanks ALOT".

But I do say "thanks"

Because getting dirty with this cancer has led me to appreciate so much else I have been given in this life and how incredibly blessed I am even though I am ill.

I am positively filthy with things to handle and yet I can do it.

Because the pressure is making me into a better human.

Diamonds form under pressure.

Diamonds are shiny.

I want to be shiny.

I want to be clean and shiny and brilliant...

and right now I am but I feel like there is this layer of grime that needs to be blasted off me to get to where I want and need to be.

Diamonds are strong.

I want to be strong.

I want to be strong and hard and so strong that the only thing that can cut me is another diamond or a very very sharp blade.

All the needles and scalpels that have been used on me can't cut into the REAL me.

They may cut away cancerous tissue or shredded pieces of a spinal disk but they don't cut into the me that I truly am.

So I am going to use this pressure to make myself into a diamond...

I'm going to use this pressure to clean myself up and be a better human.

And when others see me they will see someone who has withstood time, pressure, heat, and so many forces to become a stronger better woman.

The last time I saw Dr. Rockstar we discussed me having a knee replacement.

She's reluctant to approve it because she doesn't want to take me off chemo and I will need to be off chemo to heal.

But most of her reluctance comes from not wanting me to suffer more.

To have to go through more pain and pressure and hard times.

She wants to spare me more suffering.

But my knees are killing me and there are things I want to do and see and I can't with knees that cause me so much pain.

I might have months to live or years but in any case I want to do it as a woman who can walk and stand.

She told me "I hate to see you go through all of that..." and her voice trailed off...

I looked her in the eye and said:


And she smiled her brilliant smile and moved to my side to hug me and told me "I need you to stay around and hang out with me for a very very long time. So if that's what you want and you are stable in your next scan you can do it."

Because you see I am not ready to throw in the towel and just say "well I'm gonna die soon so I'll just suffer".


I'm going to beat this damn El Diablo and I'm going to do it with a bionic knee...

Just call me Jamie Summers

(some of you will get that reference...for the rest of you I suggest Google)

I can handle the pressure of the knee replacement because I have handled worse.

Dr. Nugent agreed I handled my hysterectomy, treatments and spinal surgery LIKE A BOSS and so this will just be one more thing I have to get through.

And it will relieve the pressure I feel in my knees when I am standing or walking.

You see...it all comes back to pressure.

I can perform brilliantly under pressure (just ask GOTT because my costumes are always "on point" and sometimes I am literally sliding into home on tech week finishing them).

I can handle pressure.

And my patio is gonna get clean and so am I...

Inspiration Song: "Under Pressure" by Queen and David Bowie...because pressure comes down and me and you and no man asks for it...but it can change us and make us clean and strong. I particularly love the last stanza:

'Cause love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love (people on streets) dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves under pressure
Under pressure

Bye darlings...when the pressure comes down on you use that pressure as your POWER and let it make you stronger. And thank you my darling HotChocolate2 for finding words that zip into my soul and settle there. I love you.

Thursday, February 21, 2019

A Spoonful of Sugar (helps the medicine go down)

Hello Darlings...

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.

He didn't.

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

All 5

All 5

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 spin.

I do yoga.

I work.

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...