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.

Finding Inspiration

I very much want to tell you about my adventures in Cancerland. We will get to that but first to get to the goods you have to read what inspired me. It'd be great if this could be published elsewhere, but since it probably won't, I'm posting it before handing out the information you all came here for :)

 I was inspired by the Presidential speech last night, and in my post-treatment haze, wrote right on through it.

The beginning of Obama's speech sounded like Eisenhower, so much so that it left me thinking, "What republican and democrat came together to agree and write a portion of the bill to save jobs and when?" 

The answer is not as important as the sentiment: party finger pointing and anger will not raise our bottom line. Comraderie will. 

It's clearly time for government to work together to save America and bring it back to the superpower it was and can be.

 Newscasters have been speculating recently why there was such a sudden drop in consumer and worldly confidence in the US, even before the S&P dropped our credit rating. They speculate it was the job market, gas prices, all issues we've dealt with for years. 

No, the answer is clear to middle americans who are disappearing daily. The terrible game played out in the media by the GOP that left both parties of consumers frozen in fear regarding whether or not the debt ceiling would be lifted, whether or not our SS checks would come, if medicare/medicaid would continue to pay the sick's treatment, if unemployment would continue, if inflation would raise suddenly and drastically, or if the safety net of our welfare system that 60 % of Americans now rely on would still exist froze our economy. 

We have seen the damage in fighting can do. We've also seen that the top 2% of 

our richest citizens can not sustain us on their spending alone. It's time everybody paid the same percentage of taxes. 

What President Obama absolutely had right was that we can't afford to wait another 14 months for a solution. He's presented a new Jobs Bill.

Obama used competition with China to motivate us. 

The speech reminded us of our children in need of updating education and technology in our schools so we can again regain or footing for the long haul. Plans including expanding trade started the dreams flowing again. 

Why are we driving toyotas when Japan doesn't have fords? 

Again, we need to compete. But how will we afford this? 

More lean manufacturing, increasing exports, closing corporate tax loopholes, and reviewing medicare and medicaid seems to be part of the answer.

The government will also review 500 regulations and only keep the minimum of what people need to be "healthy, happy, and safe" so government can continue to run efficiently and cost effectively with as little interruptions in the lives of Americans as possible. 

It appears that some of our representatives have finally realized a divided America is not America at all. United we stand. Divided we fall. We were built on the strength of freedom and unity, and together we can be the super power we once were. 

Healing Hillary Email From Big Daddy Vic

Hi to all
Nancy and Hillary are headed to New York City again today for the 2nd treatment. New York University is the research Facility that has developed this drug and it is not yet approved by the FDA. (From Hill: WRONG: It's approved, Dartmouth is getting educated as we speak. I can get treated there by Nov.) We can only get it at that site for now. Hillary is on a 3 week treatment cycle. Results are supposed to take affect within 3 weeks. Right now we do not know if the new drug is working or not. We are in Never - never land again. Sometime I think I lost my marbles!As long as Captain Hook doesn't appear I will be ok. We had also been told that Hillary would not have any nausea or side affects. Wrong! She has been back to Dartmouth 3 times in the 3 weeks, but no over night stays. She has gotten dehydrated from vomiting. She may have had a small bout of pneumonia. 

She is getting 2 out of 3 days that she function fairly normal. 2 out of 3 ain't bad- Quoted from the song from Meatloaf. If she was a baseball play she would be batting .666! If she was a gambler she would be rich with those stats. Hey we will take what we can get. I don't know when we will see the results but we will continue to enjoy every minute we can. 
I just hope they have a better trip than 3 weeks ago. They had a flat tire on the FDR in Manhattan during rush hour. For a country girl Nancy did well to get out of a very bad situation. We have 2 new tires for this trip! Hopefully Nancy can control Hillary's erge to do too much. Hillary did mention she she wanted to see a Broadway show while in town. Yep that is Hillary. She does not want to be limited. 
She wants to see the world!
We appreciate all the prayers and support we get from our friends and family. It would be very difficult for me to keep a positive outlook without a very strong support group. I can't begin to tell you how important you all are to our whole families well being.

Vic Nancy, Patrick and Grace, Preston, Pierce, Allen and Heather, Jon Xander and especially Hillary

The Price of Treating Me

Price of treating lung infection: 

Two Dr.s Visits: $950. 

CXR: $650

3 rounds of antiobiotics, nebulizer treatments and fluids: $230

 Dusting done by housecleaners (who failed to follow contract): 5 hrs/ $100 Finally breathing Free: Priceless.

 I am under so much stress. 

My head hasn't exploded yet, but I'm pretty sure my brains are slowly oozing out of my ears. 

It's a phenomenon known as "chemo brain" and very little is known about its pathophysiology. 

If it has anything to do with the "gray matter" that comprises 60 */* of your brain and would ooze out your ears, we'll probably never know since that's "owned" (aka patented) by a biopharmaceutical company and is exempt from the law that keeps people from claiming and charging for gravity.

 How'd we go with out floating off all these years? 

We'll never know. 

Stressed? Me? Why? 

Maybe because I go for chemo in NYC tomorrow and have no known accomodations despite calling and emailing Dr. O's office obssessively (I've since gotten a late night call saying if I haven't heard from Hope Lodge, it's the hotel, yay). 

Maybe because I'm so broke I'm edging towards Plan Z, which originally was doing barely legal porn, but since I've aged have changed to being the boss of a drug cartel.

The stress has trickled down to x and I hate that. I try to hide it but when I'm parenting alone it's a little hard. I want him to have all the opurtunities and the good childhood I did. He should have happy memories and know how much I love him. 

I've kept family traditions: coaching sports, going to the fair, christmas, easter egg hunts, camping, sports camps. I want him to always have something to look forward to.

 The stress from school seems to be easing, but he did get a pass from going today since my respiratory infection has become his infection.

The only reason I have any sanity is because of the wonderful support I continue to receive. 

Thank you everybody. 

I don't mention anybody because I'd never stop, but here goes: 

THANK YOU

JB for organizing my house, D and N for always being available for rides, food, etc., BK and SW for being women I can fall on, my sis who is always there, L who got me into "huffing," my parents obviously, my in-laws for always being there too, devyn for starting my etsy acct (HGraceJewelry.etsy.com), J for being our "rock," aunt B for hiding bill stress and her entire family (baby N included), another Aunt B, as in Becky, for your never ending support, Aunt P for being you,Val a fav on line friend, carol renzlemen for helping with my PS I love you letters, I miss you and need you back, F you know what you do, donna O for never ending support. 

I'm so sorry for leaving anybody out. I just needed to make a list of what I should be eternally grateful for to get me out of this funk.

 You all are what is keeping me alive and happy. All the comments touch my soul. 

Thank you to Conn. River Bank for making getting a mortgage stress free, The Java Cup and Shear Success for selling my jewelry and art. 

Finally, BIG THANKs to Lambert Auto seeling Jeeps and Dodge in Claremont NH off Maple Ave. who saved us from starving by donating my brakes, without which I would not have an inspect able car to drive. 

They did this without even knowing the full extent of our financial stress which also includes replacing J's breaks, which he did with his Dad. 

I'm so fortunate in so many ways, but right now, I'm having trouble recognizing this. 

I've decided I'm sick and exhausted. I haven't had time to myself. 

I just need to stop and relax. Hopefully this will happen soon. 

J is home. So many people are here to help. 

After going to NYC I'm going to spend a week in bed writing and doing art. I think I see the light at the end of the tunnel, and I mean some day soon our finances will be able to sustain us, the symptoms of my cancer will ease and life will ease up.

Suri's Burn Book

Suri Cruise's blog commentary on the children of Hollywood is my new guilty pleasure.
If you're anything like me, if you get your news from The Daily Show, don't want to stomach anything more violent than E News, and are waiting with baited breath for Weds. Sept. 28th @ 8pm to see Suburgatory, you'll thank me later.
http://surisburnbook.tumblr.com/

The Bright side?

It's been a week since my last post. I've been battling with a lung infection. My lungs are a constant battle, but recently, I've been paying very close attention to any alterations in my health status in this arena.
How was that sentence people?
It sounds like something straight out of nursing school that I would have been forced to write.
But really, I know my lungs can kill me. I've heard too many stories from too many people who thought they were heading towards recovery only to be bested by their lungs and sent to an early grave.
Thank you for the compliments on "The Opportunity in Loss." I can't take complete credit. My writing is a gift. I wrote it in bed in so much pain from a flare up of GVHD I couldn't even open my eyes. Every once and a while I feel the hand of God, the universe, whatever you like to call it on me as I write.
But enough about that.. ....

This week started with Hurricane Irene, and had me running in crisis mode from then on.
J watched the computer weather compulsively as Irene approached.
I was too sick in bed to even comprehend the severity of what might happen. It never crossed my mind that we could be stranded at home with no way in or out, that we may need food dropped from FEMA, or that our kayaks may need to be our mode of transportation, but that's what happened to our neighbors less than 5 min. away.
Irene attacked indiscriminately. It flooded an entire shopping plaza including Kohl's, JC Penney, Sears, The Paper Shop, Game Stop, etc., but left a Shaws untouched that was less than 500 ft. away
Luckily for me, both J and mom were prepared for the worst and had discussed contingency plans.
As J sat staring at the computer, we were shocked to see Irene split in two, sending one side harmlessly out to the ocean and leaving the other to continue up the CT River, safely away from us despite living min. from the river.
Others weren't so lucky.
Mon. schools were canceled as the damage was assessed. I stayed home with X and his "best friend/ best cousin/ brother," whatever, C. I continued to hack and spit. I barely remember Mon.
On Tues. J left on business for the week to San Diego and I received a great gift from a long time friend.
My goal this past week was to declutter. I wanted to get rid of the areas where art supplies, electronic cords, toys and medical supplies were all shoved and disorganized. Ironically, a lifelong friend of ours called to offer to help to just that!
She carried the boxes up and downstairs, an impossible feat for me.
The house is more organized, but I doubt J has even noticed.
Beyond this, my last PET scan was like getting hit with a brick of reality.
It's long past time to "get my affairs in order."
In the past 3 weeks, I've met with our Priest. I have a cemetary plot. We've met with a lawyer regarding our wills.
I had a will created on Legal Zoom, which is adequate for someone like me, with no assets and everything in shared name with someone, but part of getting organized is purchasing our home.
Our lawyer, Mike Fuerst of Buckley and Zopf in Claremont, stated if we were in fear of the 2 million insurance maximum being reinstated then we should not purchase our home.
However, with the ACA the cap has been removed and we are free to purchase without fear that my medical bills will bring us to foreclosure.
Even with the housing crisis, 50% of foreclosures still include medical related debt. I pray sometime people won't have to fear being homeless on top of surviving.
Through buying our home with interest rates so low, it's possible for J to cover the mortgage, taxes, and insurance. X's SS could cover almost the entire mortgage.
My goal is to get our finances in order to the point J and X can continue living their lifestyle here without any contribution from me, needing to take in boarders, or working hours of overtime. I think we're going to be able to do that!
I spent Weds. trying to clear out mylungs with inhalers, duonebs, and lots of coughing and hacking.
X had his soccer practice, but he also had a minor emotional breakdown like he has been everyday since school started.
I can handle these. I can predict them, but they're exhausting for a mom in cancer treatment with a lung infection functioning for the week on my own. I finally made the decision to consult a psychiatrist, for medication, which was the worst debacle in our health care journey in a long time. That's a post in itself.
Thurs. I ran to DHMC to be checked then to Borders which is going out of business only to exhaust myself.
It turned out C, my nephew and X's favorite mate, didn't have school Fri. so he could come to the fair with us so he came over.
I've found, with certain friends, it's easier for me to have X and them at my home when I'm having a hard time. They occupy themselves.
Well, we'd been discussing jack knives, what they can do, and safety. I showed them mine so C had brought hit. They wanted to make bow and arrows with indian arrowheads they had.
Mom and I gave the safety lesson and laid down the law that no whittling would go on off of the deck without supervision.
Well, they disobeyed and we ended up at the ER with a cut on his thumb where we waited 2.5 hours, so long that the wound could no longer be surgically bonded together, which was the entire reason we went.
The cut wasn't huge but it was bleeding profusely, even 2.5 hrs later when they finally got to him.
J had the same injury 2 weeks before. We debated the ER. A surgical glueing or derma bonding was in order, but we went with the over-the-counter new skin, which held but not well enough for an 8 year old. He needed something tougher.
He got a steri-strip.
That's a whole other post too.
Fri. was supposed to be Fair day and we were so excited. I'd slipped the psychiatrist appt. in at 10, not telling X to avoid the drama. We got there only to find we had an appointment with a psychologist!
X has a psychologist. I wanted an MD, someone who could prescribe. Needless to say they wasted important time.
We went and enjoyed the fair but my energy had been zapped.
And this is all why my week sucked.
Let's look on the bright side though, At least I didn't have my home washed away with no insurance.

The Opportunity in Loss

Before I had cancer I cringed when the dog brought in sand from outside. My husband and I argued about whether the silverware should be put face up of face down in the dishwasher. Our house was never clean enough even though I'd spend at least 8 hours "perfecting" it. I'd scold my son when he got excited and ran full force at me for a hug. I'd complain about imagined slights and forget about friends in need of support. I didn't even know how to be supportive. I was so afraid of failing, I barely tried.

I believed in the "if I only had" myth.

If I only had my bedroom painted, the second floor finished, a garage, and a new car I'd be happy.
Or
If only my son would only behave and my husband made more money then I'd be happy. These thoughts lead me to think if I only worked 48-60 hours a week I could make $5000 a month, and then, everything would be perfect.
Any of this sounding familiar? Were you wondering why you weren't perfectly happy too?
When I got cancer, all those ideas crumbled and fell like sand between my fingertips. I'd never experienced such as loss.
I lost my job and our financial stability. My lifelong idea that money could buy a comfortable lifestyle was shattered. My idea that if my house, career, and family were perfect life would be perfect too was  defunct.
I was striped of the foundation of ideas I had about life overnight, only to be left with the clarity to see how I was living was fundamentally different than how I wanted to live.
 I realized I'd open doors, give compliments, and wide smiles to strangers while snapping at the ones' loved most for misspeaking a word or misplacing an item.
I was surprised how sure I was of the life I wanted, and how with all the assets I had, I couldn't obtain  that ideal. I needed clarity, and I found it like most of us do, through loss, by living forwards and understanding backwards.
After cancer (AC), when I didn't feel happy, I'd look back in retrospect with my 20/20 hindsight and think of how I could improve to have the life I wanted next time. I replaced  distractions with reflections.
From losing everything, by my cancer but maybe through your foreclosure, lay-off, divorce, or other catastrophe, having anything felt like winning the lottery.
I was like a child again, excited over every little occurrence like I'd never experienced it before.
I loved that my dog could open the door herself with her muddy feet to check on me.
My husband and I would debate about cheesy comedy vs. science fiction while snuggling on the couch.
I'd open my arms wide when my son would charge full force at me like a football player wanting a hug.
I stopped assuming the worst if my friend forgot to call and started loving them openly and honestly, free from judgements.
The "if I only had" myth turned to the "if I was only healthy" montage. The stability I longed for was not financial. It wasn't anything concrete that could be gifted in this world. I longed for a daily routine and family dinners, not the largest, well groomed home in the neighborhood and the highest income. My concerns of the past didn't even register on worry my radar anymore.
Crisis, cancer, whatever, changes everything, but it doesn't have to change everything for the worst. Even when losing everything, we never lose our free will, our ability to choose, and that includes the choice to focus on happiness.
 Obstacles offer opportunities to grow. Crises allows us to practice our resilience, re-evaluate what is and isn't working in our lives, to emerge happier and smarter.

 Cancer gave me the clarity to see that the life I could still live even if I was poor and ill. I discovered I was bigger than my body, my bank account, clothing or career. Crisis had set me free from my personal measuring stick telling me I had to constantly be perfect. By disowning my own expectations, I was set free to live a life of limitless love and success. All I had to do was lose everything to understand I all ready had it all and didn't even know it. 

I hear my bed calling

I love hearing myself say, "but I'm really not THAT sick," when I'm surrounded by a group of health practitioners, seasoned RNs, Nurse Practitioners, medical students or doctors at various stages in their careers that obviously disagree with me. 

It is when I'm making the aforementioned statement, At that moment, I know I'll be getting more treatment whether I like it, want it, or not.

For example today, I've been battling an upper respiratory infection since my kidney stent was placed 2 weeks ago. 

I took 7 days of 500 mg levaquin to kick its ass out. It didn't work. 

The fluids mon. They helped until Thurs but by Thurs. I'd officially overdone myself with school, soccer, playing. I thought I just needed some fluids to keep my BP up. 

Well, That wasn't the consensus. The nurses (well, and me too) were concerned about my frequent frothy cough with yellow rattling sputum. My lungs still had wheezes and rhonchi after my nebulizer, inhaler, and prophylactic (just in case) zithromax. 

I knew I should have demanded a chest xray mon or any other day I called complaining, but it just didn't happen. 

Now, it's Fri. I had plans to scamper to Mass for little nephew P's 4th bday party at 11am, and those plans are being threatened. 

I'm getting a cxr at 1:30 and seeing a doctor at 2pm. Now the earliest we could leave is 3pm to get there by 6pm. 

Hmmm. I think todays plans have been cancered. 

Maybe a roadtrip tomorrow? Hhhmmmm, or throw in the towel and sleep the weekend again? We'll see. Now, I hear my bed calling.