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.

Fabulous...

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"

Wow...

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...

Wrong.

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...