Down the Rabbit-Hole

As my pediatrician read the results of the ultrasound over the phone to me, I saw my husband walk in the door at the opposite end on the hall. He started walking towards me and the hall extended behind him and he became my field of view. I was experiencing tunnel vision at the exact moment I heard the words "very large mass in the belly that needs to come out immediately. Prepare for a long, hard fight". Or was the tunnel vision brought on by extreme fear or stress.

After that event, the sights, sounds and smells were not of my world. My head was clouded, my emotions were no where to be found and the only sensible thing I could hold on to, was the overwhelming feeling that everything was going to be alright. Call it momtuition, call it faith or the spirit. I call it the little voices in my head. In this parallel world, things were strangely inconsistent with all that was familiar. I was unaccustomed to the language spoken by the new faces. Characters were strangers that became family and family became strangers. There were minders and hatters, things that would make me smaller or taller and yes, the white rabbit was there too. Stage right; the King of Parts announced "out with her kidney" and with it, the cancer was gone. Hands gave, heads turned, relationships were made and now I can't remember how it was on the surface. Everything has changed.

Unlike waking up from a strange dream and working furiously to wrap the meaning around the details, I have yet to try. Don't want to. I just want to love my family, laugh in the sun and eat food and say it was good.

"we're all mad here" -The Cheshire Cat

Receive

Receive.

You need to learn to receive.  It was and still is a hard lesson for me to learn.  To accept help and generosity, to treat yourself to kindness.   

The volunteer stops by my door on the unit and I think, my kid wasn't up all night puking, you should really go next door and help her first.  I still remember that little girl.  The PCA had woken Josh up with vitals and he wasn't going back to sleep without a red dye infusion, in twin popsicle form.  I stumbled out in the hallway at 2 am and as I returned from the kitchenette, my eyes fell on the door of our neighbor.  There she sat, lit eerily from above by that dreadfully bright spotlight they use at night, her family in chairs around the bed.  She had to have been my son's age, bald, her eyes blackened by fatigue and exhaustion.  She looked at me, blankly, and then threw up and whimpered.  Yes I was tired the next day, but I hadn't been through that hell the night before. 

Infact Josh is sort of a legend.  He never threw up from chemo, not once.  Even on carboplatin and cyclophosphamide and etoposide, the kid just wouldn't toss his cookies, er, well his milk.  They tell new parents about him, the kid who didn't lose his hair on the first protocol, who never threw up from chemo, who pedalled a hand bike with a chest tube and only tylenol to dull the pain.  The hold him up, they give the newbies some hope, there's a chance you won't be trying to keep your kid from choking on their vomit at 2 am. 

How can I look around at all those other patients and moms, and feel like I deserve something special when I am already so lucky on a floor where the news is easily so much worse next door.  Josh lost a kidney, but he has another, and his sister and I are the same blood type, so hopefully we have some spares.  Trust me, I am a pro, I can talk myself out of anything, even that awesome cake with the yummy icing in the cafeteria that I don't need to spend the money on or really deserve.  It's hard to receive when on my good days I already feel so lucky.

Once you get sucked into the frequent flyer club at your Children's Hospital, you start to realize there are things as bad as cancer, some even worse.  And in so doing you can start to talk yourself out of a lot of selfcare, or the right to say no. . .or even yes.  Out of that latte a friend offered to bring by, or that long shower while the volunteer or grandma sits with your child.  Or those freebies down in the playroom. Here's a secret, you don't have to be locked up in bone marrow isolation or up all night with a vomiting kid to take some free bubble bath or that slice of pizza in the kitchenette. . .or the gloriously miraculous free girl scout cookies.

It took a stranger to teach me this lesson, to finally let myself get a treat just for waking up that day, a constituent of cancertown, down over in the pediatric quarter.  My hometown is near the headquarters of an intimate apparel and bath and body products company.  Once a month a wonderful woman visits the unit and brings the last campaign's travel sizes and goodie bags and extras to the unit to give them to the patients and families.  She comes laden, and will leave empty-handed, it's her whole point in coming to the unit.  One month I was in patient and she had more than the usual toiletries, she had mixed halves of pjs sets, they were so cute.  I knew the teenage girls on the unit would love them.  There was this ridiculous one with rockets and stars, it made me laugh and tear up a little, I knew my daughter (4 yr) would go crazy if I had it. I missed her, a lot.

I mentioned it to the woman.  She said I should take it.  I declined.  She insisted.  I insisted that sweet girl with no hair in Rm 8 deserved it more, I was just a mom, this should go to the kids.  I took a brown sugar bubble bath, Penny had already gone crazy over the last one I brought home and begged for more.  They handed me a matchbox car they had brought for Josh or other little boys.  I smiled and thanked them, and felt grateful they were here to bring such simple pleasures to the unit. 

I went back to Josh's room, and he requested the pizza.  The one I personally had to go downstairs and get from the grill.  I came back, piping hot pizza in hand, dinner for myself for later in the other. On my bed sat a men's toiletry bag from said company, with 8 more little bubble bath bottles inside, eye and face cream, divinely scented lotion, 6 other little samples and a nail buffer, the bag resting on top of the crazy purple flannel pj shirt.

That toiletry bag became my hospital bag, it was so nice compared to the clear pouch I had been using, it really became so handy and perfect.  Every time I took a shower on the unit I slathered their lotion on and returned to my room where the nurses would stop by and stand in the door and say how they loved how our room smelled.  That it was so nice to smell something decadent instead of hospital.  Each night I spent in my son's hospital room on the oncology ward, I wore that ridiculous shirt and thought of my daughter snuggling up next to me.  Each visit a nurse, or a mom, or a dad or ten would compliment my shirt.  I would smile and think of that woman, with the knowing eyes, telling me I deserved a cute shirt too.

That shirt lived in oncology world.  It would get washed and reworn, and washed and put back in the bag for the next admission.  Every admission it made me remember I deserve a pick me up, to recieve kindness.  It made me remember to smile at the tired mom in the hallway at 2 am.  It made the nurses laugh.  Josh would count the rockets as he fell asleep, and I would curl up exhausted on the extendo-couch-a-ma-tron contraption and think about my daughter and my family at home. 

My son finished therapy, for the second time, in May.  3.5 months ago.  I finally took that shirt down from the shelf and wore it to bed, at home in my own bed.  I won't lie.  I cried.  There is a whirlpool of emotion when you come off treatment, especially when you relapse immediately the first time.  We've never gone this long without chemo.  That silly shirt was more than a shirt to me.  There had been nights it salvaged my spirits and flooded me with silly memories I needed.  But it is time now.  To remind myself to receive again.  To let myself accept and reward myself in the simplest and silly ways.  To care for me too.  To wake up a little early and crawl in bed next to my sweet daughter and listen to her hysteria of joy over my awesome cool pj shirt.  Penny's face was exactly as I had imagined it, all those months ago, when a kind woman who knew better than me asked a nurse which room was Josh's and left a care package for me that I needed more than I could understand.

Allow yourself to receive, accept kindnesses for yourself as you would for your child. 

You deserve it.  You really really do.

The Chicken and the Egg.

Ahh, the power of positive thinking.

Was I positive because my kid responded so well to treatment? Or did my kid respond so well because I was positive?

(Or was it the discovery that our Super Wal-Mart carries an awesome selection of $2.96 bottles o' wine which may or may not have boosted positivity on chemo days?)

It doesn't matter. I'm pretty sure it was the chemo.

I know life can suck. It can suck like an Electrolux. It's not fair. Get it out of your system for a minute a day. It sucks! It's not fair! Why my kid?

Well, this crap just happens sometimes. You didn't do anything to make this happen. God is not punishing you. It's just bad luck. (And you're right, it isn't fair.) Look for the positive...if you can. Granted, it will be a very *twisted* positive, but you gotta hold onto something, right?

Now you can see things through a whole new perspective. Kids dumped hot pink nail polish all over your dining room table and rug? Hey, it's not cancer! Your child announces (no, SHOUTS) in public that they are sad because you always beat them at Uno, except they leave off the "at Uno" part? Hey, it's not cancer! Husband lets kids play with scissors while you're away and they give themselves a mullet? Hey, it's not cancer!

Please pass me my cork screw and let me marinate in my own positivity.

Ribbons for your bald head.

Wow, um, when did that happen?

This was your life.

A week later to the hour, this is your life.

Um yeah, how did that happen?  My son was 19 months old, he was grumpy, losing some weight, but otherwise asymptomatic.  We had no idea his kidney had ruptured and been destroyed and the tumor in his belly was threatening his life, he just carried on, adapted to the pain.

For many, it's hard to believe, but I treasure that second picture.  I don't see the tubes, the medical horror.  I see hope.  He lived through the surgery.  He got a much needed red blood cell transfusion.  He had an epidural, and for the first time in months, he was pain free.  He was able to breath regularly again as his diaphragm had room to move.  You may not be there yet, you may still be in shock, images like this may make you want to look away or be horrified I took it. 

You didn't sign up for this, you didn't want to join the club, but chemosabe, you're in it. So get your steel toed boots on, because well if you don't find an occasion where you want to kick something then at least you'll look like a force to be contended with, because you are now a Cancer Mom. Every club should have a handbook, here's my version of the first chapter, you can find Christy and Gina's below. I am Melissa, you will know me by the length of my posts, sorry it's how I roll.

So you just got diagnosed this is what you need to start equipping yourself with or grappling with, or both:

You cannot stand around wishing your life was normal again. Because guess what sister, it isn’t, and unlike Disneyland, no Make-a-Wish is going to come along and make that happen. You never have to like this, but you absolutely must accept that this is your life now, this is where your path has taken you. Yup, you can make the best of it, yup you can handle it your way, but by golly you are a pediatric cancer mom now. You don’t have to wear it on a lapel pin, but it is there, it will always be there. It doesn’t have to ruin your life, but sitting around wishing to go back? That my friend will. The moms in trouble, they are the ones can't get passed that initial shock and just keep repeating, “I don’t know how this happened? I just want to go back and be normal again!”

We aren’t your neighbor, we are cancer moms. We aren’t going to hold your hand and say “I know sweetie, I wish that, too.” Wishing ain’t going to fix this, so put on some boots and get to kicking, this is your life, nobody is going to come live it for you, so get to living.  Don't sabotage yourself by thinking other Cancer moms are somehow different than you, like we got the secret book and have an advantage.  We all were you once, freshly diagnosed.  We learned along the way, we did it, and so will you.  As an awesome Cancer Mom once shared with me: You don't know how tough you are until you don't have a choice.

Yup. This sucks. And you don’t always have to give yourself a peptalk. Sometimes you are allowed to marinate in the suckitude. Pick a really good song where you can just feel all sad and have a pity party whenever you need it. Rinse, Wash, hit repeat. No, I am serious. I took/take pity party showers all the time. Crank it to hot, blare your pity party song and just stay there, cry if need be. Better yet, if you are inpatient, the hallway bathrooms with showers, at least at my hospital, they are the ONLY doors with locks. That’s right baby, you can lock the door! So when the volunteer comes by and says, “Is there anything I can do?” Why yes, yes there is. Even if your kid cries, guess what, you won’t hear it in the shower. Get on down the hall, take the worlds longest hottest shower, because guess what? It ain’t your water bill! And as Gina said, doctors respond better if you don’t stink and look like you have been trapped in a room for days.  They speak to you differently when you have made the effort to shower. They think, huh, she showered, she must have a brain cell or two in there, I will speak with her as one who is older than a kindergartner.

“Can I get you anything?” Why, yes. Yes, you can. Come on, there is always something you could use, no? Well then this is a wonderful opportunity to let your brain have some exercise. Be creative, nurses appreciate originality. So respond, have fun: “Red pudding with purple tapioca please?” Nurse: “Really?” You: “Oh fine then, how about a margarita?” This is how you make friends. Yup, your medical staff is your new circle of friends, play nice, it will soooooooooo be worth it when you really do need their help.  Like getting somebody to order up that CT just because you've got a bad feeling.

Make your kid say please and thank you, for everything. If your kid isn't talking yet, do it for them. Nurses and PCAs really respect and appreciate that, like a heap. They have a pretty thankless job, where you know, they torture and poison kids for a living. A little gratitude really makes a huge difference. I don’t care how miserable Josh was, he was saying thank you for that popsicle. He also learned to spontaneously say thank you for re-accessing his port, or changing his saline bag, or for the band-aid at the end of being accessed. Nurses really eat this up, and it shows respect. Your kid can yell, can scream, can fight, and kick, but make them say sorry and please and thank you. “You don’t have to like it but you WILL be polite to Nurse Marisol” was like a mantra. Josh had a small football in his abdomen, he had lost a fifth of his body weight and was in a lot of pain, but he still said thank you to the ultrasound tech, and he was only 19 months old. She had been kind and patient, she deserved it. Being very sick doesn't give you a free pass to be a brat.

Always read their name badge, make eye contact, personalize it, “Thank you, Marisol, you were so kind and patient with him and I appreciate it today.” People respond in such a different way when you use their name, even the transport people, or the people that clean the unit or the clinic. One of our favorites was the housekeeping lady, and trust me you want to be friends with the lady responsible for making the puke smell go away. They don't have to come stat, especially to grumpy mom's room.

Guess what? You get to learn a new language for free! Yes you will learn medical jargon for beginners, medical jargon 101, and 201! Yes this too comes free with your recent cancer diagnosis. You too will soon be able to incorporate words like deaccess, ANC, hem-onc, neutropenic, and other delightful terms into random conversation. Advanced courses to learn VRE and photopenic are available but not recommended. Do remember, learning a new language takes time and is intimidateing, so please inform your medical staff to slow down or repeat until you get the hang of it, they won't think you are stupid.

Find something at that hospital that is a guarantee to make your day better. Points if you can access it 24 hrs a day. Mine was cafeteria cake, with buttercream frosting and shaved coconut. It wasn't available all 24 hrs, but it was always there. My indulgence. Something I could do for myself. Something that was my little way of saying, “let them eat cake.” I would buy several and put them in the patient refrigerator (if I got discharged with spares still there, I went and delivered cake to other rooms. . .it is fun). If you are fully outpatient. Then the vending machine or a special piece of art, the giant puffer fish in the aquarium, something that you can find every time, and remind yourself of consistency with self-care, that you can get through. And if it is really crappy, walk away from your kid, leave them with medical staff and find your happy place and that thing/way to remind yourself to go there.  Your sanity, it is really really important now.

Duplicate. Yup buy extra deodorant and a toothbrush, put any medications and Tylenol and all that in their too. But also duplicate toys/distractions. We had/have bags that are “clinic toys” and “hospital toys.” I keep the former in my car and the other was somewhere I could get it easily if I thought we might be inpatient or if I needed someone to get it for me ( I am lucky enough to live 28 minutes from our Children's Hospital). For my son it was special cars and trains he ONLY got to play with in those places. Yup, we just got admitted, but SCORE I get to play with my Lightning McQueen racing ramp! When we were inpatient every 3rd week I just left my bag 2/3 packed. I came home and repacked it a day later with fresh clothes and just left it there. Have special pillow cases (Conkerr Cancer http://www.conkerrcancer.org/ ) and things that are just for going to the hospital or clinic or lab, your child, no matter what age will appreciate the personalization. For older kids I've seen mascots, a figurine that goes everywhere and gets it's picture taken with every trip. Make the bed up with pillows and stuffies from home, bring their bed blanket or get a duplicate for the hospital. Do not be afraid to MOVE IN. It is your room. Do take care hanging things on the wall, each unit has different rules.

A netbook can be a beautiful thing. Nick jr and PBSkids can save your life.

Always pack dvds. Find out which ones auto-replay. If your child has a tough time with late night vitals, consider letting it run all night. Yup, all night. That way when they come in to do vitals they can see by the light of the tv and don’t turn on the overhead. If they rouse your kid the child can just look up and see the care bears are still there, oh who cares I’m going back to sleep. It helps it really does. And no, it does not mean you will have to do it at home.

Give yourself permission to be weirdly inconsistent. No, I am not going to put chocolate and whip cream on his strawberries to help him gain weight. Yes, he can totally have a poptart and sunchips for breakfast. Your journey, your rules. You're a card carrying Cancer Mom, be corrupted by the power and wield it as you may. Your other kids will manage that they don’t get to, or maybe somedays they will, because some days, well who cares? Ice cream for everyone!

Give yourself permission to not be super mom. Yup, your kid has cancer, and the kitchen floor is sticky. He/She will not contract ebola from that juice spill. The flower beds will grow weeds. You are sustaining the life of a life-threateningly ill child, you rock. Hey, I said listen to me. You rock. Even if you are habitually 15 minutes late to every appt, you still rock, making it seem like the receptionists have a betting pool on your arrival time makes it exciting. Cut yourself some slack. You are in survival mode, do what needs to get done, the rest will, well. It will get taken care of or it won’t . Take what life has to offer, if someone cancels, don’t sweat it. Free time for you! And you know what, if shutting yourself in your house and being a hermit is what works for you, then fine, if people/friends don’t understand then so be it. I personally was a huge fan of the home bubble, and so was the boy, we just stayed there away from the germs.

Accept now, that some people will fail you. All those well meaning people who say “if there is anything you need,” they don’t all mean it. It’s a filler phrase, something you say because you don’t know what else to say. Accept that when you call them at 9:20 am or pm because you are out of milk and your kid’s ANC is too low and you cannot go yourself. That well, you’ll get a lot of no's sometimes. It doesn’t make them bad people, it just makes them human, and despite their attempts at empathy, they really don’t know how much that damn gallon of milk means to you today. When you get to someone who says yes, add their number to your speed dial. Say thank you. Snap a cell phone pic of your kid hugging the milk jug (yeah, my kid loves his milk, a lot, this has happened) and send it. Your gratitude helps ensure they’ll help again.

Always buy extra and in advance. If it is August, and someone gives you some free time, go ahead and buy halloween costumes or xmas presents. You have no idea what random admission could total throw a wrench in your plans later. Take advantage of any opportunity to possibly make your life easier later. Online shopping rules. . . if only they delivered milk.

Never turn down a friendly visitor in the hospital. Even if it is bad time. Your kid has cancer, people don’t expect a smiley bald kid commercial all the time, and if they do, well then, a good dose of reality is a good thing.

Get a camera. Take pictures, lots of them. Figure out how to turn off the flash, and hold still. I know you are thinking, you don’t want to remember this. But hopefully you’ll never do this again, so they are no do-overs, take the picture. You can't stop documenting life just because it isn't picture perfect. You don't know what your future holds, nothing is a guarantee. You have no idea if where you are now is a peak or a valley in your journey to come, take the picture. When you don’t have anybody to talk to, the camera can be there for you, sharing the experience with you, giving you a way to show it others. Camera phones can be an added plus, especially while in the ER for 6 hours at 1-7 am.

Start a caring bridge or blogger blog, NOW. Find a public computer to do it, and do it NOW. I cannot emphasize this enough. You do not want to have to be in charge of emailing and calling everybody, EVERY TIME. You can’t. It’s just too much. Start the site now. That way you only have to do the effort once and it gets to everyone. You don’t have to use pictures or use personal details, you can password protect it, just do it. It will be your friend.

Realize no Cancer Mom had it all figured out from day 1. You have to navigate your own path, your way, that works for you and your family. Give yourself the space to adapt and learn. Stop thinking you are lacking in something, we all have our own strengths

Breathe.

Hug your family.

Buy the push-pop or the light up piece of junk, little smiles just became a more precious commodity.

Go ahead and start taking notes...

...because you are on your way to becoming an un-certificated "first responder."

1. Stock up. There is a storm brewing and you need supplies. Become a member of a wholesale club because you will want to buy in bulk. Why risk the germ infested waters more than you have to? There is power in the pallet.

2. Buy one of those really big desk calendars and slap it on your fridge. The one with tear off paper pages, because tearing it off and crumpling it is the reward. There will appointments and medications flying erratically from week to week. (And for my family, the dreaded Broviac care and home maintenance plan.)

3. If your child is lucky enough to sport a Broviac, pick up some Press-N-Seal and a nice waterproof, long sleeve smock. And never, NEVER leave home without your hemostats.

4. Never go home without topping off the gas tank. Cancer has a sick sense of humor. Just get the gas. And keep a bag packed and in the car. Cash is good in the wallet, too. Oh, and all phone numbers to hospitals, doctors or emergency rooms along side the charged phones.

5. Get a haircut. You'll thank me. You will be the last thing on your mind until one day when you will feel your hair graze places it hasn't in years. So you take a look at your hair in the mirror and you look a little longer than you should have. Your brows are wooly, your wrinkles are plenty and yes dear, those are bags.

6. Which leads me into you. Go. Get out when you can. Take your mother-in-law up when she says she will come over for a bit. Go get a shake or a coffee, grocery shop alone or go sit in a dark theater with some nachos and an airplane bottle for your Coke. Don't feel guilty; your child will still have cancer when you get home.

Dude, what now?

So, your kid has cancer. The official to-do list for your first week as Cancer Mom:

1. Acknowledge it sucks. Make peace with the fact that your life is forever changed. If you can't make peace, don't feel bad about a nice bottle of wine.

2. Always carry a spare bag of toiletries in your vehicle. You don't want to go into clinic for an appointment and be told you'll be admitted for the next week. Doctors respond better to those who apply deodorant liberally.

3. Just go ahead and get that portable DVD player.

4. Let people bring you food. Eat it. Don't count the calories; you never know when you're going to be NPO again. That's right, when your child is NPO, YOU are NPO. They can sense an ice chip in your mouth.

5. Let people take care of your other children. Accept as many offers for playdates as you can. They won't come as often when your child is in remission, and by that time, when you have your cancer kid full of energy, you'll miss being able to farm some of them out.

6. Hell, go ahead and ask people to do your laundry. You are officially a card-carrying Cancer Mom. You will want to have clean clothes and sheets on hand for when your child is chemo-drunk.

7. When people ask what they can do to help, TELL THEM. This is not the time to act like you don't need help. Say it with me: "Hey, Friend/Neighbor/Relative, would you mind picking up a prescription/mowing the lawn/bringing me food to emotionally eat?"

8. You are about to become ridiculously self-absorbed. Give the world permission to keep going even without your presence. You'll eventually find out if an oil rig blows up or Lindsay Lohan gets arrested.

9. Grill your oncologist. Grill them like a burger. Become the honorary oncologist you've always dreamed of being.

10. Your world is upside down. It never turns right side up, so go ahead and start learning to get used to the blood rushing to your head.