15 years ago on September 11th I walked out of my last chemo treatment. My 21st round of chemo was a particularly fun (but short, only one night in the hospital) round of Cis-Platinum. We had cake right after the pump started and I puked bright blue icing all over my least favorite nurse. Mom and I watched Titanic and all of my siblings and their friends visited me. I was given the full dose of Ativan and I was high as a kite, I remember swaying when I sat up in the bed and rambling til mom told me to lie down before I threw up again. Ha!
My treatment was in no way an outpatient treatment like it is today.
I had 4 rounds of one week treatments of Ifosomide (one hour every day for 5 days) coupled with Doxorubicin for all but one of the treatments (a 3 day drip).
Ifosomide tastes like the first day of school smells. It’s like chewing on a new pencil and the only thing that relieves your senses is Big Red (if you don’t have mouth sores), rectangular apple jolly ranchers, or some of the grape or apple bubble gum they sell in the gift shop downstairs. It was the first chemo I received and I drank about two gallons of ginger ale to wash away the taste and nausea. The first time I threw up from chemo it was nothing but ginger ale.
I no longer eat apple jolly ranchers or chew that gum. Or drink Canada Dry ginger ale.
I have a fellow camper and friend that stuck big red up her nose to relieve herself. I laughed so hard the following Thursday in clinic when she and her mother told my mother and I about how she reacted to the cinnamon burn in her nose and I may have passed the story on a few times before today.
Doxorubicin turns everything the color of red cool aid. Everything. The taste is dull, though, so I never minded it much. Not even in its high doses did I mind it. However, I only left my hospital bed to pee while I was on that drip. One time we did take the pole down to the game room where I painted and painted and painted until the smell got to me. I told my Memmie I was done and we went back to the room where I promptly puked. At least I made it back to the bucket in time.
I had 12 rounds of Methotrexate.
I hate Methotrexate with every cell in my body.
It is the brightest yellow you have ever seen and the nurses wear gloves when they hold the huge glass bottle of poison that will drip into your veins for the next 3 days.
My first round of Methotrexate left me in the hospital for nearly a month, as opposed to the 3 days it was supposed to keep me hostage.
I couldn’t excrete the horrible stuff. My body went haywire and I essentially had to be sedated with Ativan so I could physically stop puking. I left the hospital with an IV pole. I remember answering the door for trick or treaters with that pole- to kids my own age- and some thought it was a costume. But who dresses up as a 12 year old with cancer for Halloween?
For every other dose I received, they pushed a bag of fluid an hour to help my body filter it. They gave me a half dose of Ativan as often as possible. It worked. For three days I peed and peed and peed and was drugged into a daze. But I didn’t have to bring a pole home again. And now? Now I have a HUGE bladder. HUGE.
I had 4 rounds of Cis-platinum.
Twice paired with the orangey 3 day drip of Doxorubicin and once it was just doubled up (my last one).
I never minded it. It was a one night drip. No crazy reactions to it, just the usual nausea.
I had roughly 25 rounds of MTPPE, which is called something else, now. It is not chemo, but an experimental drug that looks like someone captured clouds in a huge syringe. It was supposed to be administered over one hour but the pumps were really horrible and I had to reset it about every 5 minutes, so it really took about 2 hours.
I had it twice a week every week for half of my treatment and once a week every week for the rest of my treatment.
The clouds caused migraines, fever and chills every time, but the first time was the worst. My Memmie and mother layed on top of me I was shaking so hard. My fever went up well above 100. My mother read the thermometer and called my nurse practitioner who just laughed and said that it was normal. The fear left their faces but they tried to hold me from shaking, still.
I spent the 12th year of my life with a memorized chemo schedule stuck in my head and I’ve never forgotten it. I knew what weeks were in-patient and what weeks were to be spent at home recovering (easy enough, when it is every other week unless there is a complication). I ate lemons and limes like oranges because it ‘made my liver feel better’. I craved salt. I hated regular food, but my grandparents and mother saw to it that I had whatever craving hit me. The joy on my mother’s face when I asked for a steak was beautiful. My step father cooked with pleasure.
I probably vomited that steak up a few hours later, but it was delicious.
But chemo isn’t so cut and dry, sometimes. Right before Thanksgiving of 97 (maybe my 5th week into treatment?) I was so, so, SO sick. Then my fever spiked. Mom and I trucked it to the emergency room where I was poked and prodded and was completely mortified by some of the tests the cute doctor had to do. Then he said I was neutropenic. I was admitted on a Saturday, I think. All week Dr Castleberry (not my usual onco but the one working that week) tried to bring them up and nothing seemed to work. We moved Thanksgiving dinner to a later date and eventually he gave me a pass for a few hours the Saturday following the holiday. I went home and I ate EVERYTHING.
The next day my counts were gorgeous and I was sent home.
None of us will ever forget that Thanksgiving.
Aside from the blood count issues, other things can blindside you, too. Though, I sure do love getting a bag of blood. Nothing in the world makes you feel so happy and energetic!
For my sister’s birthday party in March, we sat outside while we waited on people to arrive. It was a warm, sunny day.
Two days later the insides of my elbows and all other thin skin seemed thick and scabby and it burned and peeled. My mouth filled with sores. I couldn’t talk well and drinking was hard and painful- forget eating.
We have no idea what caused it but think it was the folic acid in the vitamins I was taking, paired with the chemo, paired with the sunshine for 10 minutes.
ICEE’s are the best comfort for epic mouth sores, though. And my mom and older brother bought me one. It was going to be delicious when I drank it!
…Only… my mouth was too swollen to drink from a straw. It wouldn’t close around the red straw. We went to every fast food restaurant located on 280 to get a spoon and started with a Spork my brother whittled down. But the spoons were too big. We searched everywhere for something that would make it possible to drink my ICEE. I couldn’t even really use the little spoon on the end of the ICEE straw without making a mess.
So we stopped at wal-mart or kmart or something… and we got me a rubber tipped baby spoon.
It was the most delicious red ICEE I have ever consumed. And that day is a GOOD memory, oddly, enough.
How does this affect me today?
Today I have hearing problems, vision problems, short term memory loss, kidney function worries and heart worries. Last year was the first year my kidney functions were off, so I’ve been lucky. And my heart is trucking along. Somehow I didn’t kill it with the substances I put in my body not too many years ago. I was such an idiot. I’ve known since I was 12 that it was sensitive from the Doxy. There have been tails that the stress of childbirth could throw in into its issues, too. But I’m not done with how this affects me today.
Today I’m told that it has come to be known that people with my treatment plan do not have issues with conception and infertility, but with early menopause. I learned that 12 years post treatment, at the age of 25.
How else am I affected today?
5 years post treatment I became an amputee. If that doesn’t change your life, I don’t know what will.
And now I have breast cancer. The same kind that runs in my family, but 20+ years too soon. No, I’m not suddenly saying it’s secondary. This is a thing that was always going to happen to me. But you can’t tell me that my hormone receptive breast cancer didn’t come early because of the hormone changes my body will make earlier than the other women in my family.
But I would never wish away any of those 21 rounds of chemo, the knee replacements, the bone infections and failed attempts at repair, the amputation, the neutropenia, or the need for a spoon to eat an ICEE.
I wouldn’t even wish away my breast cancer, even though I will walk down the aisle with one breast and one leg.
Cancer has been a part of my life for 15 years.
It is not my identity, but it is a part of me.
It has created opportunities for me- I would have never attended summer camp without it. I would have never picked up a camera without camp. I would never have met the people I did that have become so dear to me. I likely wouldn’t be as close to the majority of my family without these experiences. We wouldn’t have even moved to this state if I wasn’t diagnosed with cancer in 1997.
But why is childhood cancer so ignored?
Can you imagine going through 21 week long chemo sessions at your age? Can you imagine doing it while you were a kid? Can you imagine your kids or grandkids going through it? I know you don’t want to. But it is a reality.
In August I spent a weekend with 47 young adults that did go through that. About half of us did it while going through puberty. All of us were gorgeous bald angels at some point in our lives. But we all suffer from some late effect that is not necessary BECAUSE there is very little research going into childhood cancers.
We should have known before 2005 that my type of treatment leads to early menopause.
I shouldn’t be friends with over 50 19-35 year olds that have hearing, vision, memory and fertility problems (just to name a few.).
Pass me the Ativan.