The End of Round 1

01.14.96 - 01.18.96

Due to the steady state of nausea and vomiting and more so, the constant stream of antiemetics, it is impossible for me to break down the time period between 1/14 and 1/18. The chemo was still doing it's job and fighting the cancer... but, it was also still wreaking havoc on the other non-cancer parts of my body.    

Earning a trip home

By Thursday, January 18th, I had been free of chemo for 3 days.  I was starting to tolerate the nausea without the same support from antiemetics but still felt "sick".  Nothing about the food delivered from the cafeteria looked good, except that it was my ticket home.  "You can go home today but we have to make sure you're keeping food down and drinking enough.  You also have to shower and go to the bathroom," my physicians explained to me.  "Shower? ugh.  I don't even know where the shower is!"  I thought.  Obviously, if you're peeing in a bedpan, you don't make the effort to get up and use the shower.  But now, I would have to.  My nurse detached me from the IV pole.  "I'm free!" I thought in excitement.  It was the first time in 10 days that I wasn't connected to a machine.  

Mirror, Mirror... 

What happened next will be imprinted in my memory forever.  My mother helped me steady my legs and supported me as I slowly shuffled over to the sink in my room.  I looked in the mirror and in disbelief saw someone I didn't recognize.  The girl in the mirror was definitely sick - DYING sick.  My long brown hair was greasy and just hung on my head.  My skin was pale and my right eye was completely red.  I was almost surprised that my mom didn't look as shocked as I was- but of course, why would she?  She had been with me, watching her daughter deteriorate for the past week and a half.  For me; however, this was all new, very new.  The physicians were not concerned about my eye as it was only a byproduct of the excessive vomiting - I didn't move for 8+ days and since I continued to vomit off to my right side, all of the blood vessels in my right eye popped making all of the white, red.  "Well, I can at least fix the hair," I thought as we prepared to head down the hall to the shower.

The Shower

Although the first couple of steps felt liberating, by the time we made it to the small, shower room I had to sit down.  "I'm going to puke," I told my mom.  In her infinite mom-wisdom my mother said, "Just take your time.  There's no rush."  After all... there really wasn't any rush.  I felt an urgency to get out but this wasn't the end.  Instead it was merely the beginning.  With the water running for at least 30 minutes, I continued to try to work up the courage to get into the shower only to feel nauseous again, and sit back down on the bench.  I was acutely aware that too much vomiting could keep me in for another night.  Eventually, I was able to climb into the shower and sit on the shower floor.  Getting clean, especially washing my hair, improved my mood and the nausea a little.  Then, I threw on some clean clothes- MY clothes, and we embarked back to my room ready to complete the "in order to go home checklist."  

Learning to Live with Tubes

A normal, non-chemo-receiving person would have to be careful about not getting an infection when he/she had tubes hanging out of their chest, especially when those tubes lived in the veins that fed directly into their heart.  Of course, I was no normal person.  I was a kid that just received really bad-ass chemo and no longer had a resemblence of an immune system.  Thus, infection was a HUGE concern.  Consequently, there were very detailed care instructions for my tubes.  Immediately following the shower my nurse had to teach my mom and I how to take care of the broviac, or as we now started lovingly calling it, the Brovy.  

1.) Shower only every other day, or way less!

2.) Change the Brovy dressing (bandage area) immediately after showering

3.) No swimming

4.) Absolutely NO wrestling with my brother

5.) Flush (rinse out) the tubes with Heparin twice a day to prevent clots using a syringe

6.) Change the caps on the tubes once a week

Showing off a "Brovy."

My nurse then taught us how to change the dressing.  Unfortunately, for me and even more so for my mom, the process was anything but short.  Everything had to be done in proper sterile fashion and the entire process easily took 20-30 minutes.  There was no cutting corners because this legitimately was life or death.

Broviac Dressing Changing Kit

One of the many instructions for
changing the dressing.

Swabbing the site with Betadine.

By the time I was actually granted permission to leave the hospital, I was more than ready.  It felt great to be out of the hospital bed and I could not wait to see my little brother and our beagle, Heidi.

My little brother and I were best friends, despite the typical sibling rivalry.  We were both nuts but the same kind of nuts... and we LOVED being goofy together.  Unfortunately, for infection reasons and because my parents didn't want to scare him (heck, I scared myself after looking in the mirror), I hadn't seen my brother for 10 whole days.  I simply couldn't wait to get home!

    

Cancer Day 12 - complete

Hair: check

Indifferent about food: check

Feeling tired and weak: check
Showering less than once a week: check

Tubes and scars: check

Number of Daily meds: approx. 9

My goal for this blog is to raise awareness, support, and donations for ongoing cancer research.  Please  make a donation  today to support this cause - 100% goes directly to cancer-fighting.

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01.13.96 - ... and the nausea continues

Saturday

It was only one week after my cancer diagnosis but nothing felt the same. Everything that seemed so important the week before didn't matter as I lay in my hospital bed- I hadn't showered in almost a week and smelled like vomit, there were tubes coming out of my chest, I was peeing in a bed pan with the help of my parents and my survival for another week 100% depended on the things being pushed into my Broviac (e.g. blood, platelets, TPN, antibiotics, kidney saving drugs, fluids, etc).  What happened to me!?!

The head of Pediatric Oncology visited at noon. He was a tall gentleman who could not have seemed more accessible. He expressed that everything was continuing as expected, which was something I was still trying to understand. "This is normal?" In fact, my chart from 1/13 even reported that I was 'in good spirits.'

I guess everything is relative and when assessing my general demeanor, they took into account the fact that I vomited about a Coke can worth of bile throughout the day. 

Overall, the days were starting to blend together mostly due to the fact that I was either trying to sleep to pass the time or because I was pumped full of antiemetics.




My goal for this blog is to raise awareness, support, and donations for ongoing cancer research. Please  make a donation  today to support this cause.

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01.12.96 - Chemo Continues

Friday

While the rest of the world was grateful that the weekend was near, I no longer knew what day it was, nor did I care to know. To me, it was day 3 of chemotherapy.

It was also day 5 of not showering and, despite sweating constantly, I had no desire to shower. In fact, I would agree to never shower again if it meant that the nausea would stop. As expected, the dry heaving was finally replaced with vomiting or as my physicians described it "heavy emesis."  It was bad enough to warrant the addition of Ativan to my growing list of antiemetics and a shift in my antiemetics from "PRN" (as needed) to a regular schedule. 

I was no longer attempting to eat and was on a strict "diet" of TPN (total parenteral nutrition) through my Broviac. I was miserable and although I didn't leave my bed, I was exhausted. In my chart, I was mostly described as being "pale" and "asleep but arousable."

TPN (aka my milkshake). Photo from TeamShaun.

By the afternoon, the drugs curbed the nausea enough that I felt 'hungry' but not enough that I worked up the courage to eat. I was refusing to take my Allopurinol, which lead my physicians to order IV Allopurinol for the following day. 

My Counts
If you've ever followed a leukemia or lymphoma patient's story, at some point you've probably heard them talking about 'their counts.' Within the first couple of days, we started to learn the importance and the meaning behind my counts with my ANC (Absolute Neutrophil Count) being the most important. 

A mature neutrophil ready for action.

  I was very familiar with the implication of a low platelet or hemoglobin count- in fact, I was transfused with another bag of platelets and PRBCs in the morning. But the ANC seemed to be even more important. It reported the number of neutrophils (type of white blood cells) in my body. Neutrophils were important to follow because they helped my physicians understand how able or more accurately, how NOT able I was to fight an infection. On January 12th, 1996, my ANC was 3088 and dropping. It wasn't in a critically low range yet (<1000), but I would be soon given that there were still 4 remaining days of chemo. For that reason, my physicians started me on Bactrim- an antibiotic often used in immunosuppressed patients to protect against some particularly awful bacterial infections.  

Killing Cancer?    
Things sucked; however, there was some good news. The Ara-C and Daunorubicin seemed to be working as indicated by my white blood cell count starting to drop. "How could this not be working?!?" I thought, but it was somewhat unpredictable. Everyone tip-toed around saying that things might be going well and no one, mentioned the 4 letter word that we wanted to hear (cure). Fortunately, the nausea and vomitting consumed almost every conscious moment so I didn't have a lot of time to be scared of my leukemia.

My goal for this blog is to raise awareness, support, and donations for ongoing cancer research. Please  make a donation  today to support this cause.

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01.11.96 - A Brutal Introduction to Cancer Treatment

*WARNING: Starting today, my story becomes a bit more graphic. I wish I could report that things were less awful but they weren't. This is what my cancer treatment looked like in its purest form.*

Thursday

As the Ara-C (7-day chemo) continued to drip, its effects started kicking in... rapidly!

Background and a little Ara-C Science
Ara-C, also known as Cytarabine, is primarily used to treat acute leukemias and non-Hodgkin lymphomas.  It was first created in 1959 at the UC Berkley, and approved by the FDA ten years later.  Since that point it has been used in induction therapy of white blood cell cancers (like AML). As you may recall from biology class, cells have to duplicate their DNA in order to duplicate themselves and make more cells (does mitosis sound familiar?).  

Ara-C works by interfering with this process, specifically by halting the creation of new DNA. Because my cancer cells were dividing rapidly and were going through this process of DNA creation much more than other cells in my body, Ara-C could have a large impact on the cancer cells while not destroying the rest of my body. HOWEVER, Ara-C still affected the other cells in my body. 


Due to the mechanism that Ara-C used to fight my cancer cells, it had the largest effect on the other rapidly dividing cells in my body - most notably, my GI tract. Once the Ara-C started affecting my GI tract, I immediately felt the effects in the form of unimaginable nausea and vomiting.


The Morning
The morning was tough; I was really nauseous. My dad spent the entire morning next to my bed as I did nothing but dry heave bloody mucous. As you may remember, I was still taking Allopurinol to prevent Tumor Lysis Syndrome and kidney damage, or rather, I was still supposed to be taking Allopurinol. Unfortunately, Allopurinol is administered as a pill. I did try to take it- honestly; however, my failed attempt only resulted in severe gagging and more dry heaving.

Shortly thereafter, my nurse infused Benadryl through my Broviac. Although I felt absolutely awful, there was a 30 second period between when the Benadryl kicked-in and before I fell asleep that I felt borderline euphoric! Intravenous Benadryl was my new favorite thing. In the moment before I fell asleep I thought, "finally, some relief."

What too many cancer kids look like. Borrowed from Super Skyler.

The Afternoon
Unfortunately, the Benadryl wore off and when I awoke I was overcome with nausea followed by more dry heaving. I couldn't move without dry heaving. My goal became to lay as still as possible. It was the beginning of a stretch of days when the lights would only be turned on for physician exams. The TV in my room had to remain at an almost inaudible volume or else it triggered more retching. 

Trips to the bathroom were a nightmare. I tried to have as little extraneous movement as possible while trying to pee and return to my bed as quickly as possible; a feat that is challenging to accomplish when you're still getting used to the tubes coming out of your chest that are hooked up to a machine- a machine that has to be unplugged and follow you to the bathroom. My poor parents had the responsibility of rapidly unplugging my pump while helping me out of bed, ensuring that I didn't step on/roll over/pull out my tubes, and grabbing 'barf bucket' in the event that something went awry. They couldn't act as if they were trying to move quickly because that would inexplicably make me feel nauseous but they definitely couldn't move slowly or else the wrath of a sick, 12 year old Hilary was unleashed.

Speaking of unleashing the wrath of Hilary, the nurses came in every two hours, around the clock, to get my vital signs. It goes without saying, that the only thing keeping me from losing it was the steady stream of anti-nausea meds.  
 

To give you an idea of what a pump looks like for a cancer patient. Borrowed from Team Matthew.org. 

More Antiemetics - score!
My nurses came to the rescue again, as they hooked up a bag of Zofran. Zofran is an antiemetic (anti-nausea med) used to help CINV or Chemo Induced Nausea and Vomiting. What I didn't fully comprehend at the time, was that I was getting Zofran because I was about to get another type of chemotherapy with the known side effect of nausea. After the Zofran was done infusing, I was given Daunorubicin.


Daunorubicin
Daunorubicin, like Ara-C, was first created in the 1950's. It was one of the first anticancer compounds created by isolating soil microbes, in this case the microbe was Streptomyces peucetius. Daunomycin fun fact (if that's possible): the "Dauno" comes from the name of a pre-Roman tribe that once occupied the region of Italy where the compound was created and the "rubicin" comes from the red pigment produced by the new strain of Streptomyces peucetius. 

Yep. The stuff is actually bright red.

More importantly, Daunorubicin works to stop cancer in much of the same way as Ara-C; although it uses a different method of altering the process, Daunorubicin also stops DNA replication, which halts the rapidly dividing cancer cells. 
      

The Night
The night offered a small relief (only one episode of dry heaving in four hours), which was largely attributable to the wonders of antiemetics. 





My goal for this blog is to raise awareness, support, and donations for ongoing cancer research. Please  make a donation  today to support this cause.

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01.10.96 - CHEMO TIME!

Preface

Caution Chemotherapy
Chemo is a scary word and rightfully so.  It is short for chemotherapy or "chemical therapy."  Yep- therapy with chemicals.  It just sounds barbaric and that may be due to its primitive roots.  In the 1940s the US military was starting to dabble in chemical warfare when a German air raid bombed a town in Italy, accidentally causing the release of massive amounts of mustard gas that was being transported on a US ship.  The US sent a smart doctor over to do a little research, and after performing some autopsies, it was determined that only certain types of cells were killed, which happen to be the types of cells that many blood cancers affect (myeloid and lymphoid cells).  This information was reported back to the chemical warfare division and consequently almost directly led to the discovery of the first chemotherapy agent: Nitrogen Mustard.

  

Nitrogen Mustard and its derivatives went on to fight certain types of cancers such as lymphomas and many are still commonly used today.  Unfortunately, treating with chemo is analogous to chemical warfare.  No one is impervious to the Mustard gas and although enough of it will kill all of the "bad guys", there's also no way to protect all of the "good guys."  With that being said, chemo evolved from the 1940's to 1996, slightly...

01.10.96 - Wednesday

Waging the War Against Cancer (and the night staff)
Today was the big day - day 1 of chemo!  However, before I waged war on my cancer, I accidentally waged war on the night nurses.  You should know that my parents did not like loathed having to wake me up when I fell asleep on the couch (I swear they would play rock, paper, scissors to free themselves from the awful task). So, you can only imagine how well I hit it off with the night nurses when they stuck a thermometer in my armpit and squeezed my arm with a blood pressure cuff.  "Grrr! They must be kidding!?! Vitals at what time in the morning? Is 2 am even considered the morning?" Before cancer, 2 am was the middle of the night, but now, no time was sacred. At any moment the door could swing open and someone would want to poke me.  As I quickly learned from my first two nights in the hospital, my world as I knew it was changing rapidly and there was no stopping it. Unfortunately, that doesn't mean that my nighttime alter-ego was accepting of that fact.


The Call
Before today, my parents did not have to report my diagnosis to anyone. It was our secret. Then my mom called my middle school.  She spoke to my guidance counselor, who previously had been very supportive of all of my academic and extracurricular pursuits, and for the first time my mom said, "Hilary has cancer."  Needless to say it was accompanied by tears but also an action plan was developed. My teachers would be notified and tutoring would be a possibility, if we deemed it appropriate. I was eager to keep up with my classmates, in fact, I was not going to accept any other options. Being in the accelerated math class, I was eager to stay on track so that I could take ninth grade math and science the following year, in eighth grade. Among my friends and classmates, this was the way to boost your entrance into college as it created room to take extra Advanced Placement classes for college credit (I was letting my true overachiever side shine through). There were no ifs, ands, or buts, I was not going to let cancer change my goals. Fortunately, my parents and my guidance counselor were on board.


Perks
Cancer sucks but small perks existed. This is something I figured out on the third day of my stay. The first, and more insignificant perk that I was rewarded with was a visit from the Wendy's mascot and coupons for frosties! Why they showed up with coupons and not actual frosties is beyond me; however, I was pumped. I remember salivating at the thought of a frosty. Unfortunately, the coupons would expire long before I was getting my hands on a Frosty. <sigh>

The much more important perk that my mother and I both received was getting to meet new and awesome people. A woman and her daughter, who was about the same age as me, came to my room to visit and introduce themselves. I was first struck by the fact that she didn't have any hair but then by how unfazed she appeared to be. She was at Children's receiving treatment for ALL (acute lymphoblastic leukemia). Although it sounded pretty darn close to what I had, it was not treated the same way because it was a completely different disease. She was in the middle of her treatment, which would last over 2 years!  "Wow! I have it easy," I thought.  However, the flip side, as she and her mother explained, was that she was able to mostly carry on like a normal kid during her treatment, just without hair. Over the coming week as my condition deteriorated, my mom was able to talk with someone who completely and totally understood, and for that, we were both thankful.

Checking my Heart
After consenting to protocol #94-21 that was run by the Pediatric Oncology Group, I received an echocardiogram and an EKG. Since the a great deal of my treatment was known for being cardiotoxic (causing damage to the heart), my physicians wanted to get a baseline reading and more importantly, make sure my heart was cut out for what was about to happen. The echo was pretty cool, in a nerdy science kind of way. Using an ultrasound wand, a video of my heart, complete with squishing noises, appeared on the monitor. 

The EKG was a quick test that involved strategically placing a bunch of stickers on me, attaching wires to each sticker, laying still for a minute, and then removing all of the wires and stickers.  The read out looked something like this...

Fortunately, my heart was in 'excellent' shape per the cardiologist and we could continue as planned without any additional concerns.  


No one wants AML in the Brain
It's true, no one wants AML. Period. But you especially don't want it attacking your brain. This is one of the reasons why I found myself getting a lumbar puncture around 3pm. Unlike a bone marrow aspiration/biopsy, where I mostly worried about the pain, this procedure seemed a little more dangerous. In all honesty, pediatric oncologists do these all the time and any risk of injury was minimal. However, when you're curled in a ball on your side and firmly instructed not to move as a needle is placed right next to your spinal cord, you can't help but sense the severity of the procedure. My physician explained that they were taking out some of my cerebral spinal fluid (the stuff that cushions your brain and spinal cord) to see if there were any cancer cells swimming around. Once they were able to extract CSF, they infused some chemo, specifically ara-C. The idea was that if I had cancer in my CSF, the ara-C would immediately start treating it. If I was fortunate enough to not have cancer in my CSF, then the chemo was going to work to prevent it. Although the chemo would start going to work immediately, I had to spend the rest of the day lying fairly still to prevent a headache (a common side effect of lumbar punctures due to the removal of CSF).

My Life Blood
About 4 hours after my lumbar puncture, in the early evening, I was connected to my first bag of chemo. I was still getting used to the idea that I had tubes hanging out of my chest and the associated pain from the surgery, but I quickly started to realize, treatment for AML was a 'hit the ground running' kind of thing. I then recognized the butterflies in my stomach not as nausea but as excitement. Excitement? Yep. The same excitement I felt before I got on stage for a ballet performance, was there and it was unmistakable. I was in fact excited to kick the crap out of cancer and at that moment, as the drug was being hooked up, I did not feel fear... only strength.

"This drug is Ara-C and you will be getting it continuously for the next 7 days," said my nurse as she hung another bag on my pole, ran the tubes through the machine (aka pump), and connected a long tube to my broviac. "I'm going to be in the hospital for at least another 7 days!"  The thought hit me like a brick. With the exception of my birth, I had never slept in the hospital and certainly not for over a week. My physicians had previously explained to my parents and I, that I would be receiving three different chemo agents in conjunction with one another for this first round of treatment. The main goal was to completely obliterate the leukemia and that meant it could get ugly.

As if chemo wasn't already cool enough, most chemo treatments have a nickname.  My chemo treatment was called '7+3'; 7 for the number of days of ara-C and 3 for the daunorubicin, a red chemo which I would be getting for 3 days. In addition to the ara-C and daunorubicin, my doctors threw in yet another chemo known as 6-TG.  Although the ara-C dripped the entire day, I still had a second line on my broviac which allowed for the infusion of daunorubicin.  6-TG was much less intense looking than daunorubicin and only required me to pop 3 pills each day for the week.  All of these drugs were given because they each fought the cancer in a slightly different way; however, they also came with a very, very long list of side effects.

Side Effects

Hair
The list of side effects was nothing short of overwhelming.  "The chemo is going to target rapidly dividing cells, like your cancer.  But, other cells in your body will be affected, too," my physicians explained.  As a 12 year old girl who wasn't laying lifeless in bed due to naseau yet, I asked what most girls in this situation ask, "Will I lose my hair?"  I particularly liked my brown, straight hair.  My hairdresser always flooded me with compliments and, with the exception of one incident in 1st grade when I cut my bangs in math class, I never had a problem with it.  So, the thought of losing it terrified me.  "What would my friends think?  What would the other kids at school say?  Would any boys like me?"  To my relief, my physician replied, "there is a chance you will lose your hair."  "Oh phew,"  I thought, "I'm going to beat the odds and I'll keep my hair!"  Now, I don't want to ruin the ending to the hair story but how many people have you seen with leukemia that don't lose their hair?  Eventually, I came to realize that the interesting thing about cancer treatment is that nothing is a definite- whether it is losing your hair, being cured, or not having children.  Nothing is a definite.

The Other (much scarier) Side Effects       
Chemo is scary, but losing your hair, is in reality one of the least scary side effects.  Unfortunately, when you're faced with a diagnosis of AML which is progressing rapidly, the deleterious side effects do not outweigh the possible benefit of treatment.  Some diseases provide multiple options but for me it was limited- 7 + 3 was the MD approved treatment or standard of care.  Still, the list was daunting: life-threatening heart problems at any time during treatment or months to years after treatment (thus echo and EKG), nausea, vomiting, mouth and throat sores, diarrhea, stomach pain, red urine, rash, hives, altered blood counts, seizures, meningitis, difficulty breathing, low blood counts, poor appetite, decreased liver function, tumor lysis syndrome, increased levels of uric acid, eye pain/tearing/sensitivity to light, dizziness, headache, excessive sleepiness, confusion, loss of balance, flu-like symptoms, swelling of extremities, incontinence ...  To manage and minimize the side effects, I was started on over 10 other drugs most of which I took each day. 

My goal for this blog is to raise awareness, support, and donations for ongoing cancer research. Please  make a donation  today to support this cause.

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