I hate steroids

I probably shouldn't say I hate a drug that is helping kill my child's cancer, but I do.  

When you think of steroids, your first thoughts are probably of athletes that use these drugs to enhance their performance.  But that isn’t the only use for steroids.  I was prescribed steroids once before to help with an allergic reaction.  Because of how quickly they suppressed my reaction, I used to wonder why the doctors were reluctant to prescribe me steroids for future breakouts.  Instead, I was told to use an antihistamine cream that would take forever to work.  I have since learned that steroids can cause cancer, which is ironic, because they are also used to fight cancer.  

For the first month of Charly’s treatment (the Induction phase), Charlotte received steroids twice daily for 30 days.  They caused indigestion and heartburn, so she was also on an antacid.  The steriods also caused high blood pressure, so she was on blood pressure medication.

For the first two weeks of Induction, Charlotte didn't eat much.  It was so cute how she'd sit down and enthusiastically start eating.  She'd eat a few bites, and start asking for what she wanted for her next meal or for a snack in an hour.  She would stop eating, because of the indigestion issues.  She would crawl into a ball with a tummy ache from the steroids.  I would heat up a bean bag and she would hold it against her stomach to help with the pain.

Then she stopped being bothered by the indigestion and gas.  She could manage to eat more than a few bites.  She would eat a full meal, leave the table, and come back 10 minutes later while we were still clearing up dishes and ask for a snack.  

Her face became moon-shaped, the weight gain causing her to lose the definition of her cheekbones and softening her jawline. We were warned her appearance would change and they were right.  Her stomach stretched out like she was a pregnant six-year old.  Looking back at my family updates during Induction, you can see how food became a main focus in her life while she was on steroids.  It got to the point where she would eat more than a full grown adult, then ask for seconds, then ask for a little extra again, followed a request for a snack an hour later.

I recall trying to distract Charlotte from food for at least an hour between meals and snacks, fearing she would cause herself internal damage if she kept eating.  Her stomach looked ready to pop.

Another side effect of the steroids is how it affects Charlotte emotionally.  Charlotte was always a very mellow child.  She suddenly became very short-tempered, and quick to cry when upset.  There was a reason the oncology nurses refer to the drugs as “Scare-roids”.  Thankfully, her hair-trigger temper disappeared a few weeks after she was taken off the steroids.

Charlotte had another 2-week run of steroids around 4 or 5 months after the Induction phase.  I knew it would be unpleasant, but it was still surprising to see how quickly the drugs affected her appetite and attitude.  After she was off the steroids for a couple weeks, the extreme mood swings disappeared and I breathed a sigh of relief.  I shared with our oncologist how much I hated the steroids and fervently voiced the wish that we were done with them.  Dr. Maese looked at me with an apologetic smile and broke the news – Charly would be taking steroids throughout the Maintenance period.  “But,” he said, trying to point out the bright side, “it’s only going to be for 5 days each month!”

Maintenance started 6 months ago, and we have another year to go until we are hopefully done.  Every 4 weeks, she has a 5-day dose of steroids.  Within 3 days of the starting on the steroids, the side effects manifest – hunger and short temper.  The residual affects usually last for a week after we discontinue the steroids. 

When she is under such a significant chemical influence, it’s a balancing act.  I want her happy.  When it’s time for steroid week, I plan on making her favorite meals – pork chops and mashed potatoes, chicken and broccoli casseroles, sometimes we go to McDonald’s for a Big Mac.  While she likes easier meals like canned soup and grilled cheese, a light meal won’t keep her satisfied when she’s on steroids.   

I try to evaluate if I’m helping or hindering her well-being when I yield to her demands.  When I mentioned that to a coworker last week, she declared if Charlotte was hers, she would want to give her anything she wanted, since she was battling cancer.  I have the same desires; but I know there lies danger in that route. I don’t want to spoil my sweet Charlotte and turn her into a raging monster. 

For example, a few months ago I sent Charlotte to get her nightly shower, and I grabbed clean pajamas for when she was done.  When she got out of the shower, she discovered the shirt didn’t match the pants.  She demanded I go get matching pajamas.  My hands were full at the time, so I told her she could choose to wear mismatching pajamas or she could choose to go get the matching pajamas herself.  She cried for 15 minutes before deciding to go get her own pajamas.  I wanted to just run down the hall and get a matching set, but there is no harm to her wearing mis-matched pajamas, and there is no harm to her crying until she decides what she wants.

Another night, Charlotte was unhappy with the dinner I prepared. I made rice instead of mashed potatoes to go with the pork chops.  She ran crying to her room and refused to eat. I let her cry in her room while we had dinner, hoping she’d change her mind.  She didn’t emerge from her room until we were finished with dinner and still refused to eat the rice.

If she hadn’t been on chemo and steroids I would have told her she could choose the dinner I prepared or make herself a bowl of cereal.  However, we give her chemo at her 9pm bedtime. 8pm is when Charlotte is not supposed to eat for the rest of the night, as she isn’t supposed to eat an hour before she takes chemo and for 2 hours afterwards.  That’s why instead of having any further battles about dinner, I microwaved and mashed a potato for her because I wanted to make sure she ate before it was too late.

After witnessing a steroid meltdown, someone unfamiliar with Charlotte would probably call her a spoiled brat or a baby.  She’s not.  She is the most sweet, caring little girl.  She loves to give hugs and kisses and will tell you she loves you.  She willingly shares her toys and treats with others.  She is quick to smile and forgive.  I raised this child, and I know her true temperament.  I worry about the long-term effects of steroid use – the breakdown of joints, the emotional ups and downs, the constant hunger – and I just hate steroids.