The Big Worry

Elizabeth's son is a 14-year-old battling advanced Melanoma. You can follow his story here.

TUESDAY, JANUARY 11, 2011 6:08 AM, EST

As parents, we worry. The minute they are born, we begin. We worry about the little things and we worry about the bigger things. Some of us are more "experienced" worriers than others - I fall into that category. I have always worried about each and every little thing when it comes to the physical and emotional well-being of our three kids. I'm not saying that makes me a better or more caring parent; I just approach it from this mentally-unbalanced manner. ;) I know I go overboard and for the most part, I keep this worry boxed up inside. After all, I don't want to give a signal to them that they should also be worried about whatever new pursuit and activity they are trying. And for the most part, I think I am successful at keeping my continuous stream of worry a secret (except from my husband). Go conquer the world, children - but please remember to be careful! Ha, ha ....

Yesterday, my worry was in fine form. I didn't sleep at all and after tossing and turning, I decided to get up at 3:30am. I read a while and then got some paperwork done, washed some dishes, etc. Fun times. Josiah's injection lesson later in the afternoon had my stomach in a knot and while he appeared calm and unconcerned, I was a mess. I muddled through the day, appreciating that people didn't give me strange looks when they surely noticed I hadn't even combed my hair that day.

As with many of my worries, this one was unfounded, or unnecessary - but what fun would that be?! Josiah calmly and astutely watched the nurse instruct how to mix the vials. She administered the first shot and suggested she could do the second, waiting to give him a try when she returns on Wednesday. But no, Josiah had his game on and he was ready. So, with no fanfare or hesitation, he administered the second shot into his leg. Piece of cake. As the nurse asked me if I was OK (did I look like I was going to pass out?!), Josiah proceeded to change into his exercise gear and told us he was going for a run. The nurse was floored, I was worried (of course) and I asked if it was OK if he exercise so soon after receiving the meds. She called her office and after some discussion, they cleared him to go. So he went.

So the nurse packs up her gear, continuing to sing Josiah's praises at his amazing learning ability. She stated that an instructional DVD could be made using him, he was so good with the needles. So much of my worries had lifted and I felt euphoric.

That was, until I noticed it was getting dark. When was he getting back? Was he doing OK? Would a car hit him? Was he lying in a snowback, too tired to get home? Yes, I can't let a good opportunity to worry pass me by. So I got in the car and went to do a drive-by. Luckily I spotted him almost immediately and although I couldn't stop because of a car close behind me, I was able to roll down my window and yell, "Are you doing alright?" to which I got the eye-roll and the hand signal to - move on! - and stop embarrassing me! (not sure what to call that hand signal, but it's not the bad one! Just the "shoo, get outta here" one.)

I returned home, once again almost worry-free (he still had to get by a few more cars, after all) and started to make dinner. Arriving home minutes later, Josiah was none too pleased that I trailed him. "Mom, you don't need to come find me. I'm f-i-n-e!"

Oh sweet boy, just wait until you are a parent. While I hope you don't worry to the extent that I do, you will then understand. Until then, I am the nut with the uncombed hair, stalking my kids. And that's the way it is.

Elizabeth Henderson

Newsflash, pediatric cancer parenting, it's stressful

Okay, I'll admit, the magazine I'm going to quote from is dated April 2010, and I am just now looking at it.  One of my few regular splurges that I truly enjoy is my one magazine subscription, to Whole Living (formerly known as Body + Soul Magazine).  During all those tough months I spent being behind and trying to stay on top of things, I neatly tucked each issue I received into the magazine basket.  The magazine basket became the magazine mountain and so I went through and just started recycling everything, old issues from everything, gone.  I kept all the issues of this magazine, because it's mine.

I've been going through a journey I find difficult to share with normals, those sweet wonderful people who still live on the outside of pediatric cancer land, and who frequently acquire a day pass from me to come see what I can manage to share.  Most of them don't and will never understand where I am at right now, where I have been since May 12, 2010, when my son received his last chemotherapy treatment.  But in these past 9 months I've started to realize it goes back a lot further than that, it starts in the weeks before August 19, 2008, when Josh was diagnosed with Wilms Tumor, 3 days shy of 20 months old.

The weeks when I knew something was wrong, and I couldn't shake the feeling that time was running out to find it.  That's when it all started to unravel, I was so, well stressed doesn't cover it, and misunderstandings with family and friends were rampant.  Part of me told myself that was the worst of it, all that stuff I went through trying to find out what was broken inside my child.  As we moved on to treatment I told myself it was all about getting him better from then on and out, the worst was behind us.

How a parent deals with their child's diagnosis and treatment and the life that follows for them, and hopefully their child, is dependent on so many things.  Personality, faith, support networks, occupation, family history, number of children. . .whether or not they like punk rock.  It's as personal and unique as their child's medical history.  The hard part, cancer mom, and you too cancer dad, is it's your journey, and only you can walk it, and you have to do it your own way.  What works for the mom in Room 7 or in the next infusion chair, it may not work for you.

Personally, I never cried about Josh's primary diagnosis.  I teared up after having to tell other people and hear them shatter.  I'll admit I hung up on people when they started weeping uncontrollably, I was fine, but hearing them all be unfine about this really unfine diagnosis, they were ruining my mellow.  I calmly informed my husband that while he was home getting things for Josh that they had come with the papers, that they had informed me it was also in his lungs, I had to speak the word metastasized and watch it register on his face.  I actually held completely strong until our parish priest picked up, I had recently converted, he knew us all by name, and I just couldn't tell one more person who cared about my son, especially the one I knew was going to drop everything and come downtown at one in the morning to see my son and offer a blessing before his surgery, the one scheduled at o' dark holy hell as soon as we can get you scrubbed and on a table first thing in the morning.

I found that tumor days before, and I knew.  I had already allowed myself to contemplate the different paths that may lay ahead of us.  I knew from the ultrasound, but I held a very tiny measure of hope that I was wrong.  They told us to come back later that day for a CT of that "mass," and I knew in my core where this was going, but I smiled and told people over the phone "who knows?"

Holding his sedated little body after the scan, I knew.  The staff, they all knew, and I could tell they knew.  They took us to a different recovery area, I knew, we weren't leaving that night.  They finally told us and my one resounding thought was "What's the plan?"  I wasn't broken, I didn't want to scream, I wasn't overwhelmed, I just calmly wanted to know the plan.  Plans are good, plans are useful, plans imbue purpose.  Show me the roadmap, show me where to sign, tell me what you want to do.  Tell me we have a plan, and it's all good.  I was especially supportive of any plan that involved getting that life sucking mass out of my son asap.  I welcomed surgery, it had been one of my plans.

And that's what I did for the entirety of Josh's treatment, the relapse, and more treatment.  I followed the plan.  I looked down the road, spotted hazards, made contingency plans, brought up everything I could think of with his team.  I made sure the people with the plan, had more plans waiting, that we all had a plan to have plans about plans.

I'm the kind of person who pulls aside the NP and asks "So if, well, I just need to know, if anything ever went really wrong, and I found him dead one morning, unexpectedly. . .well do I have to call an ambulance?  I think that would freak out his sister and really mess her up, could I drive him in and bring him to the ER?"  Yeah, I even made that kind of plan.  You have to know this NP, she knew about me and my plans--and that the contingency plans, and the emergency contingency plans are how I coped.  We walked through several plans, I said thank you.  I had plan, it was all good, that scenario couldn't catch me off guard, I could divert to auto-pilot, I had a plan.

I was always this way and it took a Zen Meditation class to get me to realize, you can't not think about something by trying to stop thinking about it.  The way I can let go of some thing is to acknowledge the idea, let it take the floor, have its say and then tell it, yes, and here's my plan, now please be quiet.  Then I can be calm and silly and whatever else I need to be, me and nagging feelings don't co-habitate.  I'm a "don't identify the problem unless you are willing to be part of the solution" kind of gal.

For all my plans, I didn't have a plan for post-treatment.

I floundered, like a little goldfish moved from a little bedside bowl into a giant aquarium.  Of course I wanted back out into the world, but my mojo was off.  I was used to swimming my little pattern in my little bowl, following the appointment metronome/current.  There was a lot of water out there.  Enough water to feel lost.  Enough water and other normal fish to finally force me to look back and realize that while I was coping and making my plans, that I hadn't avoided something stressful, I had just worked through it, not around it.

What I went through was stressful, I could acknowledge that without negating how hard I had worked at it.

This brings me to my year old magazine and an article entitled "Stop Stressing, Start Living!"  I knew I was going to have to read this article and not skim it when I hit this at the end of the first paragraph ". . . And yet, unlike PTSD sufferers, they hadn't been through any terrifying ordeal.  In fact, they denied feeling overly stressed at all."  I mean we all talk about co-opting PTSD to mean Post Treatment Stress Disorder, but here this researcher was going and say it's real, you can rock something, work through something, think you handle it, and yet still be altered by it.

Two paragraphs later, I snickered, ". . .now we're barraged all day long with demands and decisions.  Lee calls this intense and unabating force 'super-stress.' "  Wow, if they are just talking about a 9-5, then can we cancer parents call what we go through super-super-stress, or perhaps summa-super-stress, gigando-stress?  I dunno, but crushing demands and decisions, yeah, been there, done that.

They do go on to supply a checklist of five things for handling stressors:
1- See stress as a warning bell.
2- Focus on the solution.
3- Know when to say "enough."
4- Have a few cherished rituals in place.
5- Keep family close.

Whether you are out there freshly diagnosed, in the middle of treatment, post-treatment, or cherishing the memory of your beloved--well it's time we all fully read the headline "Pediatric Cancer Parenting is Stressful." Find your rhythm, find your mojo, find your way to keep your rudder under you and find balance, but for the love of yourself don't convince yourself this isn't stressful.

What you are doing matters.  Staying present and centered to make the decisions that have to be made is vital.  But cut yourself some slack.  This IS hard.

When you feel the stress getting to you, don't shove it away just to stay focused.  Listen to the stress, let it be your personal IV pump alarm bell.  The bag is empty or there's a bubble in the line and you can't ignore that.  Get some lunch, call a friend. . .just walk away for a little while.

When all of this reality, this life and death gets to you, focus on the simple solutions.  A balloon, a toy, a massage, a favorite show.  You can't fix cancer, you can't stop the treatment from being awful, but you can sit on the floor with a over-sized bag of dum-dums and sort out all the red ones.  Focus on the problems you can solve.

Every good superhero has a sidekick, and we all need somebody who we know has our back.  Know when you are being pushed to your limit, ask for help before you get there.  Ask a nurse or volunteer or friend to sit with your child and walk away, go find some fresh air or something that will refresh you.  Know when to kick visitors out, stand up for yourself and your child.  Know when to pick up the phone and make a call, and when it's best to just let calls go to voicemail.

Find something, that without fail you can practice to acknowledge how stressful this life is and help you find your way through.  Be it religion, exercise, creative arts, music, or computer games.  Something that you do that brings you back to something you love and to a place where you are caring for you so that you can have energy left to care for them.  We had rituals for in-patient, rituals for out-patient, rituals for our family, and I had rituals just for me.  It doesn't have to be spiritual, it can be driving to the grocery store and walking every aisle to just get a gallon of milk.  If you can look forward to it, if it can be a salve to your heart, cherish it, practice it.

Remember your family is in this too.  Try not to be so busy making the tough choices and shouldering all the stress that you leave nothing else for your family to pick up and help you carry.  Give siblings a job like packing a distraction bag and/or snacks for their sibling.  Allow your spouse to have their role, their part in it all.  Don't let the stress of managing it all drive you all apart and compartmentalize your family.

There is no handbook, no normal to this road.  It is stressful, no matter how awesome you are.
You are allowed to have a bad day.
You are allowed to be furious.
You are allowed to thrive.
You are allowed to falter.
You are allowed to make mistakes.
You are allowed to let others pick up your slack.
You are allowed to crack a little.
You are allowed to not heal up immediately.

You are allowed to take care of yourself.


Most importantly-

You can do this.
You are doing this.

Dr. Jekyll and Mommy Hyde

Confessions from some Real Moms of Baldkid County


Mom X:


So, the thing is...

I do feel bad for you most days when your kid is home with a cold.

I do feel bad for you most days when your ice maker quits working.

I do feel bad for you most days when you had to wait twenty minutes past your appointment time at the pediatrician.

But, you wanna know a secret?

No matter how many times I tell you that it's okay to complain in front of me about anything, there are sometimes when it's not. And I can't tell you when or why because I don't know when or why myself. Just some days, I don't think it's the end of the world that your kid has an ear infection.

I don't like this about myself. I don't want to make the rest of the world's problems pale in comparison to cancer and it's aftermath. And 95% of the time, I do a good job at it.

But that other 5% sneaks up on me when I least expect it. And not just to others, but to my own kids. My 5-year-old currently has pneumonia and MRSA, both of which are potentially life-threatening to a child on treatment. And I can't seem to feel like it's that big of a deal. I mean, she has plenty of white blood cells.

So, even though most days I do sympathize when your DVD player in the van quits working, there will be a day or two in there that I am plastering on a sympathetic face so thick that I feel like it's going to crack at any second as I'm thinking, "WOW, could your life get any worse?" I will be thinking, "I hope your pediatrician wasn't running behind because he was giving the news to another parent that their child has cancer or [insert major life-changing diagnosis here]."

I'll be thinking it, but I swear I won't say anything. I can't even imagine what someone who has lost their child is thinking about this very moment. But I'm sure not going to complain that my cancer survivor is trashing my house in front of them.

Don't be the skinny girl who complains about how she needs to lose weight in front of her chubby friends.






Mom Y




You are my friend/neighbor/acquaintance, and I need you to know something. There's a difference between having a crummy day, and having a crummy day and acting like it is the worse thing ever.


Talk about it all you want, call me, post it on facebook.  It's your life and I'm still your friend who cares.  But remember, please, who I am.  I am the mother of a pediatric cancer patient/survivor/angel and I am human.  I am not awesome everyday, I cannot always hold back the bile about what my child has suffered and that it is going to keep happening, every day, to more families.  Most of the time I can deal with it admirably, that's who I want to be, it's a choice.


But.


Well there are those days, when what my child has gone through, what his/her friends have gone through makes me really really angry.  On those days, if you want to say "My dad totally said I was a bad mother for how much tv the kids watch, it was awful.  Can anything worse happen to a parent?" you better prepared for an answer.  Because somehow you know me, and because you know me you know it can be worse, because you can be told your child is dying unless you cut them apart and poison them and pray it works.  


I hope I'll be tactful, because I am not saying what your father said isn't hard, and didn't hurt.  Just, stop yourself at "it was awful" and don't ask that question.  Because the next time you do I might do more than remind you about pediatric cancer, I might print you out pictures of children I knew who are dead, children who are suffering, I might lift my child's shirt and ask you to take a long look at worse.  


And then when I'm done with pediatric cancer, I may tell you what else I've earned in the trenches, that I know the answer to "can anything worse happen to me as a parent?"  The answer is always yes.   It is out there, I've seen it.  Diseases that make pediatric cancer look like a day trip to a pediatrician's office for a snuffly nose. 


There is worse than having to wait 4 weeks for an appointment, it's being told you can't leave the hospital, that your child might die if they don't intervene immediately, as in 14 hrs from telling you that you have to stay.


There is worse than a busy waiting room teaming with sick kids, it's a private hospital room on a unit where every kid there has a good chance of not seeing their next birthday, a unit that comes with a room just for children to die in.


There is worse than not being able to get out the house for a few days because of the flu, it's living in a sterile, confined, rule-laden bone marrow transplant room for 6 months when you were only supposed to be there for two.


There is worse than your child growing up and back sassing you for the hundredth time, it's watching your child slowly regress through every milestone to a tiny helpless being who can barely lift an arm let alone put it to their hip, it's watching that tortured little body draw their last breath in your arms.  


I am all too intimate with these realities, I can't block them from my head, and some days the knowledge itself crushes me.  I don't want you to have to live with them, I wouldn't wish that on you.  But I do ask you to remember they exist, to check yourself, to remember gratitude.






Mom Z




And when you say things to me without following through with the thought first, I will forgive you, but I need you to know what really happens inside my head. And it's not like I walk around all sparky, there are trigger factors. And those factors could be a future post.
 

What's that you just said?  "I don't know how you do it, you must be such a strong person" Ummmm, yeh. I got no choice but do it, remember? My child didn't go down to the oncology clinic and sign up for the war, it was a draft. And the whole family was sucked in. No, I am not a strong person for watching my children go though hell, because the diagnosed child is not the only child that suffers, I am crushed when I hear a whimper or a cry and it brings me back to a memory of that child being poked or held down or just feeling crummy. No, I am not stronger for having my eyes forced to watch so many children suffer from disease in clinics and by meeting other parents of children battling something, fighting for another day on this earth with their family, no matter what they go through every day. No, I am not a stronger person for living among the fear that the Omnipotus is lurking, waiting to attach it's prongs into my child again.

 "Let me just say, you must be a better person for going though that"  And let me say that the further you get away from the chemo, the more frightening it is to not feel that warm comfortable blanket, "walk away from the light CarolAnn, it lies".  No, I didn't get through it, it isn't over yet. I am a mother that has a valid reason to fear for one of her children to be taken under deaths wing, again. If cutting your child in half, taking out a major rotten organ and giving you a schedule for months of weekly poisoning, giving you a very large binder explaining crazy-scary side effects of the chemotherapy drugs and tests to be preformed on your child until they reach young adulthood, and the promise that you will reach your max out of pocket for the first few years is making it through to the end, than I'm ready for the punch line. So please,  if you know me, and I say something to make one of your eyebrows raise, give me a break. Ask me if I'm alright. Make a joke. Or better yet, if I have offended you that bad, try to ask yourself if scan week is near, because that, I notice is a big stress trigger. Want to know another trigger? Me too, but they are invisible. They are like those little no-see-ums that make you wave your hands around your head like a crazy person until you just snap at what seems like the thin air.

And if I hear one more "I see the effects this is having on you" and then you turn your back on me, I'm going to start taking away some of your points.

"I knew you were different when I found out you were a cancer mom" Oh yeh? And how do you mean, different? You mean like the soldiers that return home and start to resume their daily activities and/or job and nothing feels quite right. You still drive the same car, go to the same restaurants, visit the same friends, but it all seems skewed. Things look, feel and are so different now, like you are living in a parallel universe. You have been altered against your will.

One of us editor moms emailed the others this post idea to ask what we thought.  Sometimes we do that, run things by each other, sometimes we just sort of mentally purge into a post and put it up without asking for feedback.

We all agreed this post needed to be out there.  We thought it was an important post to go along with the concept of "paper cuts still hurt" - the idea that my kid having cancer does not negate anything crummy happening in your life.  But well.  Our perspective is still different, tolerant, but different.  As our support network, we want you to know that, we care, but we would also really really love for you all to be able to realize how lucky we all are, you know without you having to have a bald kid of your own.  

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.