Marriage, Relationships, Stress

On September 24th, Emma went in to surgery to have her port placed and to get a lumbar puncture, her first dose of intrathecal methotrexate and the first look at her cerebral spinal fluid. The diagnosis was not a day old, though she had been in the hospital three days.

We were pretty sure our other children were fine; but we had passed them off entirely to family.  Clinton's boss and coworkers were supportive; but he had projects that he was simply ignoring.

We sat in the surgery waiting room, the first "break" since it all began. I saw a chance to talk and process -- and I needed to talk. The woman need... the biological Must... to talk and process and vent. Emotionally, we haven't actually bought shoes until we have gotten an opinion on them. Cancer wasn't real until I could talk it out. Maybe I'm being a touch dramatic with my description, but only a touch.

There I sat next to Clinton, ready to talk, and he was was playing Lego Star Wars on his iPad. I tried a couple conversation openers; but he barely responded with some short, non-conversational reply that conveyed the stereotypical, monosyllabic, manly grunt.

Trying to be respectful of his need to use the Force and to play with virtual knobbly bricks, I checked facebook and started to set up a blog. We have always been a team, so I needed his blessing to go forward with publishing updates about Emma to the world wide web. His reply: We need to talk about it.

YAY! He wants to talk!

But he didn't want to talk, as it turns out. He wanted to fight squared-off Storm Troopers. He wanted an indefinite waiting period before sharing all our troubles and personal details on the proverbial six o'clock news.

Steam and flames were beginning to leak from my stifled feminine psyche. A Wall was going up around his heckled, henpecked, male psyche.

I went to get a drink, and tried to understand why he was being so... so...

And in that moment, I saw Clinton trying to protect Emma. I saw him not just playing games; but trying to grapple with the awful reality that he hadn't yet been allowed to internalize. He needed to shut down and process. He was trying to get some control and was certainly not ready to issue a statement. He just needed some space.

In that moment, I saw him differently. I got my drink and tried a new conversation opener:

"You need to play a game right now, to deal with all this."
"Yes."
"You need some space to internalize, and you need some down time."
"Yes."
"That's how you deal with stress."
"Uh-huh."
"That's not how I deal with stress."
He paused his game and looked at me. "I'm sorry, Honey. What do you need?"

We discussed WHY I needed an outlet. How many texts and emails and phone calls I had not returned, how I process, and that I needed to talk or type or run or DO something. I outlined what I thought were his objections to a blog, and asked what else. He explained his concerns. We discussed what precautions would make it nearly ok for him.

And then, right there in the surgery waiting room, we hashed out our personality and character differences and our emotional needs. We listened. We talked. We took turns.

Then, he gave me his bluetooth keyboard and returned to fighting the Dark Side, and I started a caringbridge page that is now this blog.

That awful stressful day in the hospital while our daughter was getting a port placed for 3 years of blood draws and chemotherapy, our marriage took a huge step forward. I learned to step into his shoes and try to see how he thinks. He learned to step into my shoes and try to see how I think. We saw our differences and found a way to serve both our needs. We both compromised a bit; but it was easier once we saw each other.

We have had a few of these since - moments when we stop worrying about "what we want" and look at the basic need - the WHY.

Within a few hours, we had adopted our four goals.

Those are at the core of most any decision we make lately. We are getting better at being a team.


I don't know where the stats come from; but I hear that 80% of parents of pediatric cancer patients divorce. 2/3 of parents of children with ADD divorce. Premature kids, twins and triplets, autistic kids, kids with disabilities, all seem to have higher rates of divorced parents.

In the stress of the moment, a selfish comment or a misplaced accusation can plant the seed of resentment, can lead to a grudge. Then when the stress continues chronically for months and you don't make an opportunity to stop and evaluate the marriage, you get in the habit of not liking each other. You expect hostility and you start every encounter defensively.

I don't want to get in the middle of anybody's relationship; but sometimes I want to shout at people, "STOP and take a second to SEE your spouse!" He probably isn't a childish jerk, and she probably isn't a nagging ___. Under stress, we all tend to be our not-best selves.

Take a drink and try to understand why. Pause your iPad, and look up. Forgive, ask, understand, give the benefit. Figure out a way that you can both get what you need. Figure out a way that you can both empower your spouse.

Don't wait until the stress is past. Step back and see the whole picture. In an emergency get the bleeding stopped; but don't go to bed until you've made your marriage important.

Going it alone isn't going to help. Divorce won't solve anything. You need a buddy, you need a partner -- for your own emotional self, but also logistically and financially. Somebody has to carry insurance and make the house payment and keep a job going. Somebody has to go to doctor appointments, manage prescriptions, clean up puke, and stay with a kid that can't go to school or day care or whatever. Somebody needs to give you a break to go scream, vent, play games, go to the gym, or otherwise decompress.

In stressful times, don't dog your spouse to your friends. Don't. Be each other's best cheerleader and best fan. Build up your buddy as much as you can, because you need your buddy to build you up. Defend and protect that marriage; because you need it more than you ever did before.

Things to Pack

Hello Emma's team.

Some day you may need to pack a hospital bag really quickly. Some day somebody who is just starting on a cancer journey may happen across this page. Some day Emma or I might look back at this and catch a peek at our reality.

We keep a small wheeled suitcase packed. In fact, I need to go take out the laundry from our hospital stay and restock. We switch off, so the parent NOT sleeping in the hospital gets a shower at home. If you live further than we do, though, the caregiver would want a few more things. Also, I need to add some things (!) to our bag. Here are some things you might want in a hospital bag:

a few sets of pajamas for the patient - for popsicle dribbles, spilled juice, and a new day.
Pajamas for mom and dad - only one parent can sleep, but we take turns on multi-night stays
Changes of socks
Clean shirts for Mom and Dad
Changes of underwear for Emma
(!)Hair elastics - for Emma and for Mom. Comb/brush.
chap stick
Lotion
(!)Toothbrushes for Emma, mom, and dad
Emma's shampoo
Pack of blank thank-you cards
Pens, notepad
Extra thumb tacks for long hospital stays - for cards and pictures on the board
Power cables - (!)Wall plug AND cable to the phone AND tablets. All the pieces. (!)

Granola bars
Slippers
Ibuprofen for Mom/Dad in case your nights are long and your pillows... you know

Then, if you have time on the way out the door, grab some snacks. You'll gravitate toward sweet or salty junk food, and you can get all manner of snacks at the hospital for more than they are worth. Try to make yourself think of healthier options... nuts, string cheese, yogurt, and that sort of thing. Have snacks in the house that you can take in order to help keep costs down while at the hospital. Consider the Ronald McDonald room as well as the cafeteria when you need a meal.

I'll maybe add more to this as time passes. If I missed something, let me know. I'll add it.

Taking Prescriptions

While in the hospital, Emma got pretty good with an oral syringe. They don't always work so well, though, because the ones that are long enough to reach the medicine in the bottom of a bottle are mostly too thick to get through the opening.

So we use the medicine spoon.

There is a twice-daily steroid that is particularly nasty. In the hospital they finally switched to the liquid form and mixed it with a large quantity of dragons potion flavoring. Insurance companies prefer to pay for the pill, though.

It is yucky.

So, take some magic shell ice cream topping and coat the pill. Stick it in the freezer. Then after a few days you can teach a 4 year old to just swallow it rather than sucking the chocolate off.
With all medications, a glass of chocolate milk makes a decent chaser. Also, Grandma got her a trophy and some gems. She can stick a gem to the trophy every time she does something heroic, like take nasty medicine or get blood drawn.

Regarding Choices

Memo to me:
Next time I am discussing seven separate pediatric cancer prescriptions with a nurse on discharge day, and he offers me the option of having them filled by the hospital pharmacist and brought to my room, I should really consider it.

I am really cost conscious, so I never go to the hospital pharmacist, understanding them to range on the pricier side for the same stuff.

Convenience, friends, might be worth something. Especially under the following circumstances:

• When you've met your deductible and the prescriptions are part of what's 100% covered for the rest of the year. Zero copay on $350 or zero copay on $370 isn't actually a difference.
• The pharmacist is not 1 more stop, but 2 more stops because 7 prescriptions aren't a 5-minute process.
• Even if stores are open 24 hours, there are only a few 24-hour-pharmacist locations, and so the lines are long on Saturday evening.
• Your kid was just discharged, is tired, and needs one of those prescriptions tonight.
• Whether or not you know it, pediatric forms of this stuff might take time to compound or not be regular stock. The pharmacist may call the doctor and ask for a variation, and the doctor might not call right back. Then it's 3 stops and some phone calls and waiting.
• Sick people come to the pharmacy for prescriptions, and I have an immunocompromised child at home.

This one was my fault. For the first time in a week, I had control of something, and I chose my default without considering. I could have made a better choice. It isn't a big deal, just make a note for future reference.

Actually, upon looking at this list, I think I will print and bring to the PCMC inpatient pharmacist that I talked with about my prescriptions. He didn't recommend one way or the other. Maybe he doesn't want to pressure me into buying from the onsite pharmacy, or maybe he just hasn't considered it this way.