Monthly Archives: April 2012

A Nugget of Joy

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Finding joy is sometimes difficult. Well, folks, that’s what you call stating the obvious! Today has been one of those days. Cancer likes to kick you while you are down, of course, but it also likes to pull the rug from under your feet. It’s been tugging at the rug under my feet all day, making me quite unsteady. I’ve been asking Brian questions, trying to make him comfortable, getting things for him, preparing meals, etc. However, today he’s been tuning me out and I have been frustrated with him to the point of tears. He’s been frustrated right back. I don’t know if it’s intentional or just that his brain is a bit foggy. Both are reasonable and completely understandable. We spent the better part of 20 years married, but had time away from each other. He’d go off to work while I stayed home with the kids, each of us doing our own thing and then enjoying family time or time as a couple. Now he has to spend every waking, and sleeping, moment with me. For me it’s kind of old hat. I’m used to staying home and taking care of meals, laundry, dishes, and the like. Brian, on the other hand, is used to heading off to a job and accomplishing something during the course of a day. There are likely moments he feels I have actually become a ball and chain, keeping him tied down to his hospital bed or this house. Intentional or brain fog? I still don’t know.

Yesterday Brian gave his iPad away. His parents were talking about getting one and Brian decided it was time to give his up. Typing had become difficult and he has been forgetting how to use some features. His mom is pretty sure he’s giving it up because he wants the iPad 3, and under normal circumstances that would be 100% accurate! He still has his phone, but it’s basically a miniature iPad, so using it is even more difficult, unless you count Siri, but even she cannot understand his commands sometimes due to slurred speech from medication. It’s upsetting to watch things he’s enjoyed become cumbersome. He refuses help with sending texts, though I still asked several times today if he’d like some assistance. Is that right or wrong? I don’t want to make him feel like a helpless child.

So, where do I find the joy in a day like this? How do I choose to be joyful completely on purpose? I think joy is sometimes connected to duty, doing something you know you need to do even though you may be weary from it. Making sure Brian’s needs are met gives me purpose and I have taken it on, not out of duty, but out of love. However, some of the tasks I do are not optional and there is the sense of accomplishment in looking back over the course of a day and seeing that everything has been done, however imperfectly. He is tucked in and sleeping (hopefully dreaming) and I will soon follow.

One of my favorite books is Anne of Green Gables and tonight I am reminded of Anne’s optimistic take on life: “Marilla, isn’t it nice to think that tomorrow is a new day with no mistakes in it yet?” There we are, a nugget of joy discovered as the sun sets on a difficult day.

Fresh Tomorrows = Joy

Sleepytime & Snuffleupagus

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After nights of intense battle, I am happy to report that we have watched sleeplessness wave its white flag in sweet surrender. Brian has been sleeping and dreaming for four nights in a row. The past two nights he has enjoyed 12 hours of sleeping and dreaming, with just a quick break when he wakes up and wants his meds. Seeing him wake up and look refreshed is a welcome and thrilling change. I dealt with insomnia for years, so I understood the irritation and the desperate need for rest that simply refused to come. But I was an insomniac who was otherwise fairly healthy, so I didn’t fully comprehend his anguish. Brian wanted out of his skin, out of the house, out of his life – he just wanted a break from what had become a nightmare.

On Saturday we had a steady stream of visitors, up to eight at at time, from 10:00am until 6:30pm. I was elated at how alert Brian remained throughout the day, how he was able to communicate, remain calm, and enjoy himself. My dad and stepmom had flown in from Utah, but had no expectations due to the chaos that had ensued just days before. We had not seen them for five years, so it was truly a gift that our Super Hero Hospice Team worked their magic. Having Brian back is a treat.

Today we went for a drive to see Brian’s parents and visit with mine again before they fly out tomorrow. It’s been a while since we’ve been able to drive anywhere over a few miles. This time Brian remained calm except for “The Incident” which I’ll relate momentarily. I’m hopeful that more car rides are in our future so he can feel even more freedom and experience as much as possible for as long as possible.

Okay…The Incident. Wives, you know how you get clammy hands, a sweaty brow, and a feeling of claustrophobia when you are in the driver’s seat while your husband is in the passenger seat? Don’t lie. I’ve talked to enough of you to know it’s what happens in the majority of marriages. You drive perfectly fine by yourself, but feel like a nervous teenager when he’s in that passenger seat. Well, a husband under the influence of opioids is still capable of critiquing his wife’s driving abilities. That was all a verbose way of saying we had a fight on our little road trip. Why in the world would I feel it necessary to share that? To say that we are still normal in nearly every way. Brian and I let it go later on, knowing that we were both being petty. It made me a little grumpy for a while, but it also made me feel good. Good? Yes!! I’m glad for those normal moments when it seems like we are the old Brian and Jacque, fighting about stupid things. Sitting here now I can even find the joy in it. We made up more quickly than we used to and we talked about the reasons behind our frustration. We communicated.

Communication = Joy

Switching gears a bit – did you ever have an imaginary friend as a kid? I did not, but always thought it would be pretty cool to have one. Now when I think about that I wonder why it never occurred to me to just make one up. That’s all it takes, after all, right? You don’t have to have one show up do you? Or register for one? I’m actually going somewhere with this. There were these two little girls who were born one day apart 38 years ago. One was named Jacqueline and the other, Jill…ha ha – they could have been called Jac and Jill! Anyway, they were inseparable little blond girls. When Jill was six, she moved to Kansas City. When Jacqueline was nine, she moved to Dallas. For years they wondered what had happened to each other, but on Saturday they reconnected after 32 years!

Jilly-Bo-Billy came by for a visit on Saturday. For 32 years she had thought I was not real. You think it’s cool to have an imaginary friend?Well, I WAS an imaginary friend!! I was Snuffleupagus. Pretty awesome. Jill was so happy to find out I was real that she cried. So not only was I an imaginary friend, I was like the Velveteen Rabbit because I became real! Even Awesomer.

Imaginary and Real Friends = Joy

Welcome to My World

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Welcome to Joyful on Purpose. Wow, this is a big, scary, wonderful step for me to take and I sincerely hope that through sharing my own journey, others will be inspired to find joy in every little thing.

For the past few months I have been sharing my experiences through Caring Bridge, chronicling my husband’s battle with stage 4 metastatic melanoma – how it has changed our lives in tragic ways, but also filled it with much happiness and, yes, joy. It began as a way to keep family and friends informed about Brian’s condition and give medical updates. What happened was unexpected. People began to send me emails and leave me messages telling me how moved they were by our struggle and what I was sharing. They encouraged me to keep writing and in doing so I was given a gift, one of peace and, yes again, joy.

So come along with me as I travel this winding road, looking for joy in all things.

Joyfully,

HRH Princess Jacqueline

Healing Waters

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Our hospice team is like a little band of super heroes and I feel so blessed to know each and every one of them. I’m saying this after experiencing a truly great day, but I feel exactly the same on days we struggle. If you spent a day or two with them you would understand what I feel. They get frustrated along with us at every little setback and they cheer enthusiastically with every little (and big) triumph. Agape means love and that’s what I feel for our super heroes.

The change in Brian today was quite impressive. His demeanor was calm, he laughed hard and smiled big. He even joked around like he used to. I saw his personality return. He’s a little slow and somewhat tired…kinda like he has cancer or something. 😉 For him to be able to describe the way he feels as “perfect” pretty much sums up the improvement from yesterday.

This evening a high school friend of ours stopped by for a visit and Brian was able to talk and reminisce for a couple hours. She commented that she couldn’t believe it’s been 20 years since we’ve seen each other. Time does fly by. Someone once said, “the days are long, but the years are short,” and that is certainly true. Twenty years ago we were all beginning to plan the next big phase of our lives and now here we are having experienced all the ups and downs that come with the human experience.

Another visit we had today was from our chaplain. We talked about many things, but in the course of our discussion I had a lightbulb moment. I stumbled upon the reason I feel so connected to Florida and why it became, and will forever be, home. Over the last three years Brian and I have had some intense struggles and faced some things we almost could not bear. Also during that period we began paddleboarding and not all of our time on the water was spent chasing sharks. There were other times we paddled far out into the Gulf, to the point we could no longer be seen from shore. Out there we saw incredible creatures, of course. We also found peace, tranquility, and solitude. It’s easy to clear your head when you are surrounded by blue water in front of you as far as the eye can see. The “world,” represented by all those on the beach looking as tiny as ants, is far behind you. We would sometimes just lie down on our boards and stare up at the clouds, listening to the sounds of birds and water and occasionally fish or a sea turtle. Serenity. Other times we would talk and argue, occasionally even fight. It was a safe place for those difficult conversations though. No one could hear us and we always seemed to be able to work through our differences and difficulties. One day I told Brian I felt like the sea was healing us. And it was in many ways. We learned important lessons about ourselves and each other. Our perspective was forever changed. It’s hard to feel self-centered when you are standing on a board surrounded by millions of gallons of water and a never-ending sky. It’s humbling. That water has been here much longer than I have, going through its cycle over and over and over. I’m a tiny speck on the shore. One small person. Here for a limited amount of time. But while I’m here I get to choose how I spend my time. I’d prefer to spend my time being grateful for each day and for the people I’m surrounded by. I want to experience the beauty of the world. I want to practice kindness and compassion.

I learned so much of that in the warm water of the Gulf of Mexico, paddling out into the blue, living in my little slice of paradise called Fort Myers. And that is why it will always be my home.

Perfect

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I have shared so much sad and frustrating news lately that I thought I would give a quick update now instead of putting it off until this evening. I know you are all waiting with baited breath, staring at your screens, to hear from me! So…

Brian slept. And slept. And slept. Oh, how good it was to see! He fell asleep at 7:30pm last night and I was a little nervous, but hopeful. He slept through the CNA arriving and also me dropping the tea kettle on the stove (see…I’m clumsy). He didn’t move at all until 1:00am. 5 1/2 hours of sleep! I was shocked. He took his meds and sleep took over again quickly, less than 15 minutes. He continued to sleep and I woke up a little after 8:30 and heard him asking for a big glass of water. Over 7 more hours of sleep. And dreams.

Today he has smiled. And laughed. And when asked to give the doc a one or two word description about how he feels right now, Brian thought for a moment, hand on his chin before replying, “Perfect.”

I hope that will continue throughout the afternoon and evening, into what has been the dreaded nighttime, and on until morning. And then repeat, repeat, repeat.

Ok, there you go! Now return to goofing off at work, or whatever you were doing!

Smile. Do a good deed. Find one thing to be grateful for.