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.

DONATE HERE