oLiViaRz

My dad’s journey: a look back and forward

Back in June my small family got a huge blow - my dad was diagnosed with Stage 4b Hodgkin’s Lymphoma. It was a rough month. 

The first round of chemo started immediately, with barely time to think about the long and daunting road ahead: 12 total rounds of chemo, one every 2 weeks. Dad’s hair quickly fell out, but somehow his smile and muscles kept getting bigger. We celebrated the little victories through phone calls and my much more frequent trips home. I could see my dad’s super hero strength shining through.

My two weeks home at Christmas were some of the most cherished of my life. We cooked, we laughed, we played, we hugged. I don’t think we ever doubted we’d have this kind of fun together again, but you could feel that it was hard earned. But there were tests and results looming ahead.

On January 17th, with my parents in the doctor’s office and me on speakerphone, we heard the news: you are in remission!  After a huge sigh of relief, somehow we knew we wouldn’t be off the hook that quickly.  Because my dad was high risk for relapse, the recommendation was to move forward with a stem cell transplant – a procedure that would significantly decrease his chances of relapse, meaning a long road of fun ahead.

Dad re-entered the hospital on 11th March, and like he proved from Day 1, was once again ready for whatever came his way. There was vomiting, mouth sores, more lost hair, many unpleasant procedures and too many bags of chemo, fluids and antibiotics.  But re-infusion came and went, and dad plugged ahead with the same determination and stride as before.  Deemed the “healthiest guy on the floor” he turned his attention to making friends with all the doctors and nurses; after all those drugs, it seemed laughter was in fact the best medicine for too many days in the hospital.  And mom’s hearty food and gifted strudel helped to gain a few fans, too.

Dad was released on 26th March.  And by the 29th, he was told his blood counts were essentially back to healthy levels.  After all that fighting, he’s now facing his new reality: I AM CANCER FREE. As he can attest, it’s almost as scary as the initial news – it means you have to resume your life, pursue other goals, give back. But I can tell you, as a daughter, there’s no better news in the world.

My dad will walk me down the aisle (one of these days!), he’ll be there when I get my next promotion, and he’ll pick me up the next time I fail.

Check out my justgiving page and donate something – really anything – to help Leukemia and Lymphoma research continue to advance. For me and all daddy’s girls out there…

update

short version: my dad is a super hero

slightly longer version: reinfusion happened, which my dad described as the strangest feeling ever and something he wouldn’t want to do again.  but, of course he did it in only 45 mins, when typically it takes up to 2 hours!

monday night was rough. fever, chills, no appetite, lots of blood work, naseau + vomiting….NO sleep.  but within 24 hours, a transformation: eating, walking, a shower and smiles.  oh, and a full night sleep!

fingers crossed for much more of the same.  still another week+ in the hospital, but things are looking good!!

thanks so much for your good wishes.  i’m a firm believer that it’s a huge reason things are going well.

cancer: kill it in the butt, with love

who know who’s killing it? my dad. and not just it, he’s killing cancer. big time!

4 rounds of chemo done (number 5 tomorrow) and his PET scan results monday were, according to doc, absolutely fantastic. my parents’ neighbor says he’s doing so well b/c we love him so much; i think it’s actually b/c he loves us just as much (maybe more?).

there’s of course more - amazing docs, the best medicine, a positive attitude, healthy eating, exercise…and he’s lucky enough to have the best of all. but the love…i think that’s the secret weapon.

while dad is killing it in the butt in his own way, jenna’s way is pretty damn inspiring, too:

So what exactly does it mean to Kill it in the Butt?

Killing it in the Butt is a take charge, in your face, hold-no- prisoners attitude that I chose to adopt during my 6- month battle with Cancer.

I chose to Kill Cancer in the Butt with the tenacity in which I wanted to live.

I Killed Cancer in the Butt by writing, by dancing alone in my room, by singing on the top of my lungs, and by running every day that I physically able to.

I started this blog Kill it in the Butt in order to create a place where I could process, reflect, think and dream about what life looks like during and after Cancer. It became my refuge, my primary coping mechanism, my outlet to the world that I felt increasingly disconnected from.

Throughout my journey as I continued to open my heart and mind, I realized the critical importance of movement during a time when I felt trapped and betrayed by my body.  During the days when I was immuno-suppressed and unable to live in outside world, I danced alone in my room, dreaming about what it would be like to be joined on the dance floor by my family and friends.

As the moments, days, and months wore on- the lonliness and isolation worsened. While I was increasingly dsconnected from the world around me- I was determined to figure out a way to bring the people I cared about most into my world.

I decided to put out a challenge.

I asked my family, friends, and loved ones to twist for me.

While I was unable to physically do the running man, or the electric slide, I could do the Twist. I figured if I could do the Twist with poison running through my veins, those I cared about could do it too.

And so we twisted.

Within a few days I had countless videos from tiny twisters around the world- who were determined to Twist out Cancer.

And this is how the movement was born!

I twisted in order to reconnect with a body I no longer understood.

I twisted in order to raise awareness about my disease.

I twisted to give others hope that were fighting.

I continue to twist because I can, because I should, and because I must.

I hope you will join me.

To submit a video to a Cancer survivor, fighter, or loved one claimed by this disease please send your video to twistoutcancer@gmail.com

we’ve still got a fighting journey ahead, but i’m pretty convinced i know how it will turn out. you better believe i’ll make my dad dance his own move when that day comes! :)

What a month

I met someone recently who is in love with rollercoasters. Perhaps my own love for them could have better prepared me for this past month.

The month started with a holiday with mom - we were both extremely excited, but a bit apprehensive to leave my dad at home on his own after some recent more severe health issues he’d been having. But we went ahead, and truly enjoyed every second of it. Lazy breakfasts and beach time, hiking the Cinque Terre, helping a lifelong family friend celebrate her marriage in the south of France and daily phone check-ins with dad. It was blissful. And at the end, we made a pact: our number one family priority is to get dad’s health back in order. The holiday helped mom realize she can do it.

We didn’t know we’d be forced to deliver on that pact so immediately, but when mom arrived back home on Monday night dad couldn’t even get out of the car to greet her at the aiport. He was that weak. In the morning, it was off to the doctor, who immediately sent them to the emergency room. I was now 5,000 miles away from the two most important people in my life and all I wanted to do was be there with them.  But Dad assured me he was fine and there was no need to come home. Yet the lack of diagnosis proved the doctors didn’t have the same faith.

Last Sunday I decided the distance and unknown was too much and booked an emergency flight home. 2 train rides, 2 plane rides and a car ride….20 hours…and I was beside my dad. The first feeling of relief. But that feeling of relief was immediately replaced by a heavy weight in my chest, one that got heavier each time I questioned what was wrong with him. It hung around for 3 days until we got the news last Tuesday.

You have Hodgkin’s Lymphoma, a type of cancer.  You are in Stage 4 B. It’s serious, but Hodgkin’s is 95% curable and we have a plan.  12 rounds of chemo, 1 round every two weeks, and we start Thursday.

Relief: we know what it is. But, of course, that didn’t last long. Then the questions came pouring in: how? why? what in the world took so long to find this when he’s been feeling like shit for so long? And anger. But we again quickly agreed there was no time or energy we could waste dwelling on that. It was time to fight.

Tuesday and Wednesday night were probably the worst of my - and his - life. Fevers, coughing, moaning, bad dreams….my 6’6” dad full of super powers was not supposed to suffer like this. Thursday started with a quick surgery to place a port (through which he’ll get his chemo going forward) and then the what felt like an eternity wait for the chemo to start. IV 1, 15 mins. IV 2, 15 mins. IV 3, 30 mins. IV 4, 1 hour. Sleeping, eating, chatting and bathroom breaks all the while. And then we waited again: what effect would it have? would there be nausea? more pain?

But the doctor was right, after a bit of grogginess, Friday provided relief.  And Saturday, the first smile and intense laughter we’ve shared in months. It was working!  Sunday, a few steps and more smiles. Monday, two full laps around the 7W “block” with the help of a walker. Tuesday, an un-aided lap and many trips in and out of bed. And Wednesday, two un-aided laps, a firm handshake and assuring smile from the doctor, and the words we were waiting for: you’re going home today!

A month-long wild ride, with at least 6 more to go.  But, I have a feeling I’ll share that love for rollercoasters at the end of this; anything for more smiles, strength and many years ahead of good times together.

I love you, dad. Let’s do this.

To my daddy…

Happy birthday to my hero, my friend, my motivator, my advisor, my music taste-maker, my inspiration.  I love you!