Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, September 10, 2011

Coding at NYU

The NYU nurses ran a code on me. 

I was sleeping after having fun, turning treatment into bonding time with mom. We'd gotten into NYC Weds. At 5:30, perfect timing to get dinner and go to the theatre. Nobody goes to 8 pm shows on weds. evenings leaving a great oportunity to see a play on the cheap. 

We ate at Lindy's, a well known theatre district diner that is not worth its reputation. 

We'd gotten tickets for Sister Act with a coupon on-line in advance.

Sister Act holds sentimental value for me. It was our (heather, my twin, and I's) favorite movie in 3rd and 4th grade. My sister and our basketball friends memorized the soundtrack and blared it on the way to games. 

I had to see it, and it was beyond expectations, everything I hoped for and better. The jokes were quick and kept coming. The songs were magic and the fun didn't stop rolling. It was the perfect updated family version of the movie I loved a decade ago.

I made it to bed at 11pm, way past my bedtime, only to wake up ready for an outing by 8:30am. We headed for breakfast, Mom and I are all ready regulars at a greek dinner 1.5 blocks away. 

Then we ventured to Chinatown where the first person I met asked directions with an exasperated, "nobody speaks english here." 

It was there I started to feel ill. I began to dry heave a little and became weak but that didn't stop me. If it did I'd never do anything. 

I bought a few things during my "no spending time." Thanks Stony for the money to "do whatever," but I get extreme buyers guilt.
I always have. This is nothing new. I'm plagued with guilt, images of starving children, and visions of sweatshops, but the fact we're on a strict budget (and have been for years) tantalizes me. It's like sneaking around with the friend you've been banned from seeing. 

We were waiting for a favorite store of ours to open in 15 min but during those 15 min.  my GI upset traveled to my bowels. It's pretty common that if one side of my GI tract acts up the other is too.

I spent most of those 15 min. In the bathroom at Payless evacuating everything until there was nothing but air. 

With GI upset taken care of I was back to happily shopping. It only took a blazer, shoe and bag purchase (an orange prada, I'm addicted but what I really wanted was a birkin) to make me feel evil, materialistic, and vain. Being gravely ill has changed my wants. I know I don't need anything material to be healthy. I want to be healthy. Its hard to find joy in shopping if you don't know if you'll be able to wear it or feel like God may send you to hell for the purchase, but I was bonding with mom and couldn't resist.

 Also, after last week, I needed some retail therapy. 

I was nervous about getting my second dose of the med at NYC. I was so nervous I'd brought my Holy Water to NY for special prayers and blessings. Fr. Stan also told me he'd be holding a mass in my honor. This gives me a special intention, like a loud prayer, to God.

I'm so blessed for these people. 

Even though we were told a reaction would happen the first time, mom and I were suspect. This goes against what I'd learned in pathophysiology. How can I get an allergy without first forming antibodies from ingesting the drug? This is why babies don't have allergies.

 Who knows who is right but at 1:30, fifteen min. Into my infusion, I woke from my deep sleep. I thought I'd nearly jumped out of my chair wide eyed and told my mom to get a nurse. 

Her version has me waking gently and quietly saying, "I don't feel well." Pause. "Something doesn't feel right." Then her getting up to get a nurse, any nurse. 

This new nurse came right away, "You don't feel well, what's wrong?". 

"My heart feels like it's going to explode in my chest. It's beating too hard." I said, quietly, gasping for guppy breaths. "My hands itch and hurt." I stared at them like they were foreign objects. "They feel like they're going to explode from the inside. My feet are starting too." 

I was fully awake now, and not having been premedicated, was acutely aware of the seriousness of the situation. I started to think of all I wanted to live for: Xander, my family, the books I've yet to write, the changes I've yet to make. 

"Where is her nurse?" Nurse 1 asked the group of other nurses who had appeared as support while she nonchalantly turned off my therapy. 

The nurses started arriving, taking positions, many asking "Is this her first infusion?" As they arrived. 

My nurse came rushing in, wide eyed with a Doctor. The Doc sat to my right holding my hand and rubbing my arm with her cool palm. 

My nurse took over the position near me, my pump, and the code cart. A few other nurses sat down clearly in a predetermined position, all with a role. 

"I don't feel well." I said again. My face was bright red. I felt hot and swollen all over. 

"Where's the rash?" Somebody asked. Mom lifted up my baggy gauchos to find nothing but a few red dots and a whole lot of inflammation. She ran to get me a wet cool cloth. 

I was having trouble breathing. 
"I can't breathe." I said, leaning forward. 

"Hydrocortisone, 125mg" the Doc said while she held my hand and stroked my arm, keeping me calm, keeping me attached to this world.

I've only coded once before in Feb. 2008, and then I had an NP, Nancy, sit by my side too, stroking my hand, talking to me calmly. It was the single most important thing that kept me attached to this world then, and again this time, It was the single most important thing keeping me attached to this world. Every code team should have a member sitting beside the patient holding their hand, rubbing their arm, and whispering sweet nothings if possible. Every person on the verge needs this tie to life.

 "Benadryl, I want benadryl" I said. 

"This is much stronger, it will work fast." My nurse told me as she pushed the hydrocortisone into my medi-port. 

"1:23" I heard a nurse announce. 

I still wanted that benadryl, not instead of hydrocortisone, but in addition to. 

"Benadryl, 50mg" the Dr. Said. 

I started heaving, violent, rib breaking dry heaves. My body wanted the allergen out of me. 

My mind still clear, I started to get upset. I had an allergic reaction! What would I do if I couldn't take this anymore? I worried.

"1:28" I heard a nurse call out to record the time I received my benadryl, another anti-histamine.

"What does she take for nausea?" Somebody asked my mom. She calmly started to give a list including my allergies. It was then we realized I had been "premedicated" to receive therapy at my first visit. I'd been taking decadron, a steroid to stop nausea and vomiting which is also used to prevent allergic reactions. 

"1 mg Ativan" the doc called out. Once it was pushed in, I began to feel sleepy and medicated. 

The doc had left. 

"Lie back," my nurse instructed me. 

"No", I told her, " I can't breathe like that." 

I had a nasal cannula passed to me. I also had a sneaking suspician that if I did lie back, I may wake up on a vent with a tube down my throat. I didn't need that. I could breathe.

 Through everything, my oxygen level stayed above 93. My heart rate was beating 130 beats a minute when I thought it would break through my chest, and my blood pressure was a normal 107/72. 

My vital signs are never that good!

Heavily medicated and in safe hands, I started to drift off to lala land when my nurse tells me, "Remember Hillary, A reaction is not a reason to stop treatment. Now that you've received your pre-meds to prevent a reaction, we can continue with your therapy."

What? Now? I was scared. I started to whimper softly. I had to get my balls on and do this again? Right away? 

"Why are you crying?" My nurse asked. 

"You ran a code on me." I said half accusing, half matter of factly that I could have died, I knew it, and I was going to take the medication again, immediately. I was too drugged to even comment. 

I got comfortable in my chair and woke up at 6pm to my mom shaking me, telling me I'd gotten my therapy and we could go to the hotel.

"Yeah, we'll stop and get food." I said. I was hungry.

Mom squeezed my shoulders smiled looking directly into my eyes and said excitedly, "We can do a girl's night!"

I looked at her and laughed, how could I not love someone who made what had to be done to recover sound like an exciting sleep-over?

 I consider myself blessed in more ways than one from that day. Even though the nyu nurses ran a code on me, it was a professional, organized code, probably the best I've ever seen and even thought the President infringed on girl time, his words inspired me.


lanabanana said...

Well, I am SO sorry I missed all of THAT excitement!!! I knew I should have come! Still saying goodbye to wedding company, but life will be back to normal on Monday. Let's get together soon and bead!

Anonymous said...

bekah had the same reaction during her second infusion- she continued to have them even with pre medication in following infusions

hang in there
darlene bekah's mom