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.
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