Out of State, Out of Mind

28 07 2011

Theo, seconds before a jump rocket launch. Photo by Amy Rauch Neilson.

We’re playing hooky, Theo and I. We bolted early Monday morning, hitching a ride with some long-time close friends who were, coincidentally, in the Detroit area over the weekend and heading back to their hometown near Indianapolis.

It’s not just a vacation. It’s a necessity.

Days after I was released from the hospital (note that “release” is the term of choice for both hospitals and prisons), I saw my shrink. She told me I was a mess, that she hadn’t seen me this bad since I’d received my diagnosis back in January.

This I already knew. Don and I had an opportunity to go to dinner last week, just the two of us. We talked about how many steps backwards my hospitalization had thrown us. “Just when we’d gotten into a routine, all hell broke loose,” he said. And once again, the little certainty we had begun to depend on in our lives had been sucked down the drain.

Even though our routine over the past several months has involved something as horrific as chemotherapy, it was still something we had fallen in line with. We knew that I’d be in chemotherapy Tuesday and Thursday for two weeks, off a week, repeat. As awful as it was, it had become our “new normal” and somehow, I continued to not only survive, but thrive. Over the weeks and months that followed, we were able to let our guard down just a bit, breathe a little easier.

Then came my sudden and unexpected trip to the ER on Monday, July 11, followed by a week-long stint in isolation with teams of doctors hovering over me and blood draws by the gallon it seemed, as the search for the villain for my condition continued. By the time I was released Saturday morning, my mental state had reverted back to the terror and horror of January. I was a wreck and couldn’t seem to focus; my primal fight-or-flight switch had been flipped to “on” and I couldn’t figure out how to dim it, let alone turn it off.

Don, I learned over dinner, was experiencing the same kind of regression. Somehow, he told me, we had to find our way back to that peaceful place we’d been in just weeks earlier. And that, we both agreed, was going to take some time. When life throws you a curveball, it takes a while to rebuild that sense of trust, of some semblance of a foundation.

I told my shrink that I needed an “Out of Sight, Out of Mind” experience. I needed to be miles away from the hospital and the lab. Even my house, as beloved as it is, carries reminders at every turn, it seems. The calendar. Medical bills sprawled on the counter. Packets of gauze I’d been using to cover my lesions with wet/dry dressings. She agreed.

I called my friends in Indy, people I’ve known since I was 14. They, as always, welcomed us with open arms. “Out of Sight, Out of Mind” quickly turned into “Out of State, Out of Mind.” And that’s how Theo and I ended up in Indianapolis this week.

This is what I’ve learned about handling the mental facet of cancer — or of any difficult life circumstance. You’ve got to not just pay attention to the psychological aspect, but you’ve got to address it. There’s a lot of talk about the “mind-body” connection, but truly, physicians and mental health care providers still have a ways to go before they will be in sync with one another.

When all of this began happening back in January, my sister Julie — a two-time breast cancer survivor and one tough cookie — offered me these words of wisdom: “In order to maintain your sanity, honey, you’ve got to start planning ‘bright spots’ in your life. Your calendar can’t be all about chemo infusions and doctor appointments.”

I took her advice to heart and began making room on my calendar for “bright spots,” both big and small. It could be as simple as a date night with my husband, or as elaborate as a week in DisneyWorld with my hubby, son, brother and sister-in-law and family. Whatever it was, those Happy Squares on my calendar got me through.

Long about July, though, I looked up at the calendar and realized that it was full of chemo and doctor appointments — many of which had to be scrapped, scratched off the calendar, and rescheduled due to low blood counts and my unexpected hospitalization. The calendar was void of Happy Squares. And I could feel the backlash in my life.

So, I took the calendar down from the hook in our kitchen and began studying it. My chemo schedule has never been so unpredictable, with cancellation after cancellation following low white blood cell counts. Then, my week-long hospital stay for that terrible psuedomonas infection. Something had to be done.

With my oncologist’s permission, I’ve opted not to return to chemo until the first week of August, which will give both my body and my mind a chance to recover. That left an unexpected, very big, very welcome blank spot on our calendar for the last week of July.

Here in Indianapolis, we have spent the past few days filling in Happy Squares on our calendar — boating on the lake, swimming in the neighborhood pool, a trip to Dairy Queen for a tall vanilla cone dipped in chocolate, family dinners around a big table, full of laughter and stories, old and new. Today, another trip to the pool and tomorrow, the water park. And wonders abound. Theo’s first time tubing behind a boat. His introduction to the world of jump rocket launching (see photo, above), which has kept him busy for hours at a time. New-found friends with whom to find mischief.

Theo is in heaven, as am I. I have come to believe that although my subconscious mind cannot totally erase the fact that I have cancer, my conscious mind can — and has — for a period of several days. That is giving my brain and my body some much-needed rest and recuperation. And that can only be a good thing.

Copyright 2011, Amy Rauch Neilson



18 responses

28 07 2011

Amy, thank you for a very poignant reminder for my life. I am not battling any life-threatening condition, but I have so few “happy squares” filled in…… and lately it has been grinding on me something awful. I need to plan for those Happy Squares and make the decision that nothing is to deter those moments from me.

Actually, I’ve kind of already started this, but didn’t name it as such. I now have four nights that are no longer my own but I love it — because I’m in rehearsals for a community theatre production. Meeting new people, doing something I enjoy, and it’s helped me weed out what isn’t all that important. And I am treating myself to a monthly massage because I deserve one hour every now and again to just allow myself to be pampered…. or really, in a weird sense, to be ministered to, instead of always ministering to others.

Happy Squares. I love it. We all need so many more of them. Here’s hoping that soon, your calendar has way more happy squares!

28 07 2011

I’m glad you’re out of town, but you’re never out of mind. Love you!

28 07 2011
Linda Stanislawski

I’m glad you could get away to a happy place :). Praying for you and your husband to have an abiding peace. As a 3 year survivor of stage 3 breast cancer, I truly understand the mind game with fear. Keep trusting the Lord and meditating scriptures that speak to you and bring you peace. You are in my thoughts and prayers

28 07 2011
Kristi Rugh Kahl

Theo seems to have mastered jump rocket lauching ! WOW he sure can get some air! So happy for both of you to get away and enjoy the little things in life. Keep those Happy Squares coming in August and the months to come 🙂 xoxo

28 07 2011
Laura Kasischke

SO glad you’re off together having fun! God bless you both!! xox

28 07 2011
Sharon L-S

Happy Squares – what a concept! Duh why didn’t I think of that.

My son-in-law is on forced LTDisability at age 49. Not easy for a Type A+ person who is one one was in Moscow, China and India. Now he’s travels are back and forth to the Mayo Cliinic. I am going to share your idea of Happy Squares with him.

Enjoy the escape to Indianapolis. Take Theo for a drive around the brickyard if you can. He’ll love it.

28 07 2011
Rita P

Enjoy. Cherish. Repeat.

28 07 2011
Karen J. H.

What an awesome concept—“Happy Squares”! I love the idea. You deserve a big bunch of them! ENJOY

28 07 2011
Michelle Hicks

Amen girfriend! Six years ago today, my entire family celebrated my mom’s 65th birthday at her favorite place on earth, Torch Lake! Little then did we know, the headache she had that week was the first symptom of her brain cancer….six weeks later, she was gone. We all need to cherish the little moments in life, and tell those in our life how much with love them!

You have, and will always be, an inspiration to me! I am so blessed to know you, and your amazing husband, Don. And Theo….he was the reason we met. And one of the most amazing children I have ever met.

Love to you all! Enjoy your trip.

28 07 2011
Carol Phillips

You are so honest and said it well. One of my favorite blogs yet. Once you are back to “normal,” call me. I have your digital program. Let’s have a private class.

28 07 2011

Waiting for the day that you blog that your entire month of the calendar is filled with “Happy Squares.” I am so happy that you had this chance to get away, to clear the mind. You may be out of state…but you are ALWAYS on my mind. Enjoy the rest of your week.xoxoxo

28 07 2011

Looking forward to our happy square soon! Actually, I think your week in Indianapolis was technically a happy rectangle on the calendar! Even better! You can tell the engineer is coming through…now how about a rhombus!

28 07 2011
Ken and Gay

Superb!!! Relax, refresh, rejuvinate, recoup, replace stress with relaxation!!! Looks like you and Theo are doing all of the above!!! Looking forward to our beach date in Aug. with Marybeth and the girls!!! Hugs xxxooo

28 07 2011

Happy SQUARES…love it…gonna share it….THANKS! Praying for a complete healing for you!

29 07 2011

YOU are such an inspiration. I’m so glad you are neck deep in “happy squares” this week.

29 07 2011

Your life lessons are incredible and I am a better person for following them. I pray for your healing and wonderful years ahead with your husband and son.

29 07 2011

Indeed, it is a good thing!

31 07 2011
Sandy Sherman-Sarlund

Love the idea of “Happy Squares” it’s the little things in life that make the most difference to those around us 🙂 As always you & your family are in my prayers. Enjoy your time w/Theo & friends.

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