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Butterfly Blog

A Day in the Life of a Cancer Mom

This weekend was my second Mother's Day as a Cancer Mom. Last year, we were in the middle of Delayed Intensification II, and while I think I may have suppressed the memory, I believe I spent much of the day dealing with vomit. This year's was much better until our emergency ER trip at 11pm. All is OK, and we were home by 3am. Not bad, all things considered; normally, the ER on a weekend is a bit like the Hotel California--you can check in, but you can never check out. At that point, though, I was so exhausted, I would have been happy to have them keep us overnight just so I could fall asleep. My son was obsessed with listening to Taylor Swift's song "Blank Space," but my iPhone couldn't pull it up on YouTube, for some reason. One of the outer rings of Hell must involve trying to keep your four year old somewhat quiet in a silent ER at 2:30am, while he shrieks in that special whiny tone all preschoolers magically learn when they turn 4, while simultaneously shaking with rage, "But I want T-O H-E-A-R T-A-Y-L-O-R S-W-I-F-T!!!!!!!!!!!!!".

So even though the very last part of my Mother's Day was somewhat of a bust, it really wasn't a big deal. He is OK, we were sent home, and it was so uneventful that I actually spaced mentioning it to my mother when we spoke on the phone today. And that got me thinking about Cancer Parents--Cancer Moms, really, since I am a mom; but I know dads feel, experience, and deal with everything on this list. To most people, an 11pm ER trip (on Mother's Day, no less!) is an event that requires up to the second posts on Facebook. It requires real time texts and updates to grandparents, friends, siblings, anyone who has a stake in the child. It requires lots of telling and retelling and re-retelling. It goes down in the annals of your motherhood as The-Mother's-Day-Weekend-Johnny-Went-To-The-ER-At-11pm. And you know what? I get that. I totally do. Two years ago, I would have been doing that, and I probably would have demanded a Mother's Day re-do, complete with more wine and maybe another morning to sleep in, too. But when you're a Cancer Mom, an 11pm trip to the ER in which everything turns out OK and you're released in a few hours? Well, that's just a day.

A Cancer Mom:

1. Lives in the moment but is prepared for the unexpected future. She revels in the seconds and even hours and days of normalcy, when her child can be a regular child. She knows that those seconds and days can be snatched away instantly, and so she puts her phone away at the playground to just watch her son climb the monkey bars. She indulges his, "but why?" questions for longer than a typical parent. She is usually able to chuckle in the face of a serious tantrum or meltdown--not always, but usually.

2. Has a hospital bag packed at all times--it has enough clothing and items for both her and her child to last at least 4 days in the hospital.

3. Has puke buckets in each room of the house and a few in the car. Zofran is stashed in almost every room, too. It doesn't matter, though. Even when the Cancer Mom holds the puke bucket directly in front of her child, he will lean around it to vomit on the couch.

4. Can't remember a very important and long conversation from the day before with her husband about when he is taking vacation and when he has to travel, but can remember with surprising accuracy ANC, platelets, hemoglobin, and white blood cell counts from the last several months of labs.

5. Knows all the nurses' names on the inpatient floor, but has trouble remembering the names of neighbors she's known for several years.

6. Gets very excited about good syringes. CVS is stingy with the good ones--the ones with the rubber stoppers (they always try and give the plastic stopper ones). She may or may not have an issue with hoarding the good syringes.

7. Double checks every. single. thing. that goes in her child's body that is prepared by someone else, be it food, chemo, or OTC meds. People make mistakes--it's her job to catch them. She also watches anyone accessing her child's port or putting meds through the port like a hawk, and she has been known to make make nurses stop and re-scrub the hub.

8. Can go from pajamas and bed to the car and on the way to the hospital--and have everything needed for a week long stay--in less than 5 minutes. See number 2 for how.

9. Knows when the IV alarm is about to beep, and can stop it before it does. If the alarm beats her, she can silence it confidently, knowing she doesn't need to run and get the nurse.

10. Gives filthy looks to anyone sneezing or coughing in an enclosed public space. If said offender doesn't cover his or her mouth, the Cancer Mom's inside voice will forget it's supposed to be an inside voice and will say something out loud about the spread of germs.

11. Has been known to pick her child up and flee the cereal aisle, leaving a cart full of groceries because there is a Loud, Phleghmy Cougher just rounded the corner towards her, hacking and spewing left and right.

12. Knows the feeling early on, shortly after diagnosis, of going to a store that is having great "end of summer" sales on kids' clothes, and not shopping the sale section for next summer's clothes... because she doesn't know if her child will be here to wear them and grow into them.

13. Recognizes that HOPE is buying her son the super adorable sweatshirt that is 3 sizes too big because it's on sale and it's the last one they have.

14. Becomes infuriated with herself when she worries that buying that too-big sweatshirt will jinx him.

15. Stares, incredulous, at her husband when he asks a basic question about 6mp. Haven't we been at this two years? Hasn't he been getting 6mp EVERY NIGHT for a year? And he's just now asking this question?

16. Spends hour upon hour upon hour researching her child's disease. She knows its past and its present, and she is trying to learn the future. She knows what has gone wrong with her son's treatment, and what has gone well. She knows the information that points to a bad outcome, and the signs that point to a good outcome. The purpose of all this reading and research? A window into the future that will tell her if her child will relapse. She knows, intellectually, that that crystal ball doesn't exist... but she can't stop herself from trying.

17. Has a sign that she hangs on the door during steroid weeks: "Abandon all hope, ye who enter here." Not really, but some days it feels like it.

18. Knows that when her child's hair smells vaguely like unwashed dreadlocks, even immediately after a bath, her son's hair will start falling out within the week. This Cancer Mom's son has lost his hair three times-- and each time, it smelled like his scalp hadn't been washed for a week in the days leading up to it coming out in clumps.

19. Has to stop herself from urging her friends to bring their kids in for a "peace of mind" CBC when they tell her that little Johnny has a cold AGAIN.

20. Takes any and all opportunities she can to advocate for more awareness and funding for childhood cancer research. The man walking the dog who politely asked how her son was doing? He got the spiel. The nice lady checking out groceries at HEB? She also got the spiel. Awareness matters.

21. No longer cares if she offends guests in her house. Your friend who you are pretty sure doesn't wash his hands after peeing? He gets handed the hand sanitizer no fewer than 5 times in the hour he's at your house. Your mother after sneezing and then just delicately rinsing the tips of her fingers under running water? She, too, gets handed the hand sanitizer with nary a word. The signs to wash your hands while singing "Happy Birthday" are all over the house, people! If you don't do it, expect to be silently judged while you sanitize!

22. Knows to not believe the Steroid King when he says he wants more and more and more of something. That is how you ended up with 5 lbs of asparagus (at $4.99 a lb) last spring. As soon as you try and prepare and buy something in bulk, the Steroid King will not eat it. The Steroid King will be, in fact, highly offended and extremely angry that you had the temerity to offer him a food that he has been eating every day, multiple times a day, for weeks. Judging from his reaction, you may as well have offered him poop on a plate. The asparagus is just that gross and disgusting now--despite the fact that he just ate an entire plate of it not one hour earlier. The same goes for the dozen hard boiled eggs you just made, after painstakingly boiling them one or two at a time four times a day for two weeks. Egg salad, anyone?

23. The Cancer Mom does not cry in front of her child. She makes every effort to show her son that this is just normal life, and this is what we have to do, and that is that. Instead, she sobs on her way to the grocery store, in the parking lot of CVS, and in the shower. She does not even let her husband in on that grief and anger--the grief over the loss of innocence and what life "should" have been, and the anger over what her son must endure. Those emotions she keeps to herself, because to share them would be to explode in a billion tiny fragments, until there is nothing left. Maybe one day she'll share those emotions, but not now.

24. Is used to the weight of worry. It is now a part of her soul--it's a permanent weighted vest that has stitched itself to the fiber of her being. She has learned to walk in it, run in it, dance, laugh, sing, and cry in it. She does everything in that weighted vest, and she wonders if it is a blessing or a curse that she no longer remembers life without the weighted vest.

25. Gets very excited when she finds out that Pediatric Blood Cancer magazine has whole articles online for free.

26. Has become an expert at faking it. She gets through whole conversations, parties, errands, even sex, while having a good portion of her mind on her child's cancer. Shhhhh--nobody knows she's not really listening. Until her husband asks her a question about vacation/work schedule…

27. Knows more about her Child Life specialist's life and what she did over the weekend than what her best friend has done in a year of weekends.

28. Has, at some point, confronted the idea that she may have to plan her child's funeral.

29. Grieves for the woman she once was--the one who was incredibly empathetic, who was carefree, who loved to laugh, who wanted to help and fix everyone's problems. That woman is gone. She has been replaced by a mom whose entire being is focused on keeping her child alive. The sympathy and empathy she once had for so many people is now focused almost exclusively on suffering children. She can no longer handle strong emotions in others--she feels, at times, like she has a monopoly on strong and intense emotions. When offering comfort to someone other than a child or another cancer parent, she feels like she is faking it.

30. Has antibacterial Wet Wipes everywhere--several in the car, several in every purse, several in the hospital bag, several in her son's school bag--they are everywhere.

31. Is the fiercest advocate for her child. If she were the one with cancer, she may accept answers she doesn't quite understand, or she may accept pain of an unknown cause, or she may not speak up if something is not sitting just right. Because it is her child who has cancer, though, the Cancer Mom will stop at nothing to get the right answer. She will question her child's doctors, she will seek other opinions, she will do her own research, she will keep pushing for answers, and she will run on empty for days, weeks, months, and years in the name of keeping her child alive.

32. Recognizes that every day she is given with her child is a gift. She drinks in her child's smiles, laughter, quiet absorption in an activity. His pursed mouth while sleeping, his joy in new accomplishments, his breath on her neck while hugging, his hands in her hair while she bends down to put on his shoes, and his delight in eating a special treat she just made for him. She absorbs them all, she cherishes them, and she quietly memorizes each moment, for she knows what it is like to think she may never have had those moments, and she knows what it is like to think those moments may not always happen.

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