Not just the hair

In dealing with our daughter having cancer, we expected that she’d lose her hair. Though our previous cancer experience wasn’t extensive, that is a pretty well-know signal that someone has cancer. But there’s so much more!

One thing we have figured out is that it’s constantly changing -there’s always more to know. But, at this point, the beginning of week 9 of her chemotherapy, here are a few of the other side effects of having cancer that we’ve experienced.

For Joanna:

• Getting “poked” twice each week -a needle in her arm for labs and her chest for chemo.
• Wondering if other kids will make fun of her.
• Wondering if she’s going to die from this.
• Vomiting -lots and lots of vomiting.
• Getting covid tests before each surgery and hospital admission.
• Being expected to give a urine sample for a pregnancy test before hospital admission.
• Finding globs of hair in lots of places as it was falling out.
• Needing to learn to swallow pills to take medicine each weekend that is designed to help prevent a lung infection that can result from her treatment.
• Having to get a shot in her leg at home 24 hours after “big chemo”.
• Tiredness.
• Getting short of breath from normal activities.
• Food tasting weird.
• Food smelling weird.
• Chemo-caused constipation, and taking medicine to try to help with that.
• The knowledge that doctors will be monitoring her closely for 10 years to see if she’s one of the patients that gets a new cancer from her cancer treatment -not does her rhabdomyosarcoma come back (that’s a whole separate thing), but does she get a new, different one from the chemo.
• Due to the pandemic, having to give up normal activities because it’s just too many un-masked people in an enclosed space.
• Being hungry ALL the time due to an anti-nausea med.

For us, the parents:

• The ongoing stress of knowing we don’t know.
• Trying to keep track of an evolving list of medicines needed at home, and how to respond to new pain or medical things.
• Time, lots and lots of time (and frustration) on the phone with the pharmacy, the doctor’s office, the insurance company, the hospital scheduling people. And, the waiting on hold to actually talk to someone at those places.
• Stacks of paper -bills, authorizations, explanations of benefits, medicine pamphlets, lots and lots of papers.
• Having to learn how to give her a shot (and then make arrangements for someone else to do it).
• Realizing that shot arrived in bad packaging which meant it hadn’t stayed refrigerated on the way, so spending more time on the phone working out getting a replacement sent, along with getting instructions on how to return the bad one.
• Finding a wad of hair on the floor of the car last week -this is week 9, her hair loss was pretty extensive at day 10. Finding it was a call back to that trauma.
• Continuing to learn what it means that “you are your child’s best advocate.”
• Not knowing who at the hospital to call when we have questions, wondering if we should wait until our weekly appointment, and then realizing that the people we see at that appointment aren’t the ones that can answer the questions.
• Wondering if all those pokes in her arm are going to make it harder for that vein to do it’s thing, or to be used in the future. I could probably ask, but as the previous point showed, who should I ask?
• The shock of the effects of chemo on her “big chemo” day. She starts out the day basically normal Joanna, chatting up the nurses, finding ways to occupy her time, enjoying playing in “the Zone”. Then, the chemo gets into her and a little time passes and she needs MORE nausea meds, like right now. And then she passes out. Seeing her all curled up in the hospital bed, knowing the treatment is making her feel so crummy is hard. And, then for a few days she still needs zofran and barf bags.
• Wishing I had a good answer to “how can I help? What do you need?” Sometimes I do have an answer, like when we’ve just run out of something that is still tasting good to Joanna. But other times, there’s not any “thing” we need. Just like everyone else, we need friends, companionship, listening ears.
• Dealing with all this during a pandemic means we have a huge added layer of interpreting what her medical team is telling us about what’s best for her. We really, really want to go to church and Bible class -but it’s a big crowd of unmasked people. It just isn’t an option, And, that really stinks.
• That 10 years that she knows they’ll be testing her to see if she develops cancer from treating this cancer means 10 more years of doctor co-pays, scan co-pays, lab work co-pays. We can’t even hardly begin to estimate what that will be, yet we need to be preparing for it.
• Waking up to the sound of her vomiting -2 days after the quick chemo that doesn’t cause nausea for lots of people.
• Trying to figure out what to feed her. Things don’t taste the same.
• When that one med made her hungry all the time, trying to figure out how much to let her eat. Trying to figure out what else to give her that’s good for her, will taste good to her, and be filling. Yikes!
• Though we try not to “borrow trouble”, there is anxiety about next steps of treatment. Radiation is on the schedule in a few weeks -what will that look like, what will it do to her, what are the likely and potential long-term effects.
• Being so busy handling what has to happen today, or enjoying the blessing of a “good or great” day that there isn’t time and/or energy to do normal household upkeep or process the ongoing emotional chaos of this diagnosis. (so I process in a way-too-long blog post 🙂

So, yes, the hair loss is the visible sign of the treatment for cancer. But there are so many other things that go along with it. And, though I’m “wordy” this doesn’t even cover it all.