Getting Away

“Getting away from it all” is probably a pretty universal desire in the human experience. We all have a need to rest, relax, refresh, and re-create from the ordinary stressors of life. But the concept of “getting away” has taken on a different meaning in this cancer journey. There is of course no way to escape the reality of the situation. Susan’s symptoms – tremors, memory problems, constipation, balance issues, neuropathies, dry mouth, anxiety, attention deficit and the like – are always with her. The knowledge of what is happening also dominates what would otherwise be a routine life. But we’re learning alternative ways to “get away” in body and spirit. Our backyard is a good place to start. On a warm, sunny day (we get a lot of those) just 40 feet outside our back door, we can sit in the shade and listen to the birds and the fountain and the wind rustling through the trees. We can gaze at the wonderful variety of plants and colors – the fruits of 11 years of Susan’s gardening efforts. We can lose ourselves in a book or daydream while knitting. We can close our eyes and doze into never-never-land. (My new Father’s Day hammock is especially nice for that.) It’s a sanctuary for all living things. A squirrel made himself at home not six feet away from me yesterday while I was reading (Casey was inside at the time). We have fox, ducks, and raccoons passing through from time to time in this suburban environment where you might least expect it.

Looking back through time is something of a getaway too. We’ve been going through 30+ years of photos together. God bless Susan for keeping them organized in albums! Memories have come flooding back as we recall the circumstances of various pictures that record our history together – and realize how rich our lives have been. We both marvel at how young and skinny we used to be!

We have always enjoyed traveling – literally getting away. Many of the memories we’ve created, especially over the last five years have involved wonderful places offering expanded perspectives about our human history and diversity. However, long distance travel and especially air travel, has become more difficult and complicated for all of us, let alone for people with special needs. But short trips are still pretty doable. We especially enjoy roaming in the Rocky Mountain region – Colorado, Wyoming, and Montana. Estes Park has been one of our favorite spots over the years. Just being in a different environment – a really beautiful one at that – for a couple of days is something we relish. After only a couple of hours of driving, we are suddenly in a different world. It makes it easier to “get away” if you’re soaked in the splendor of a special place.

For us, the idea of getting away has evolved from just planning a major family vacation or a long trip to include something as simple as a latte at the local coffee shop. It’s probably as much about the choice to “be away” in our heads as it is about taking our bodies physically “away”. It takes some effort to do the head thing. While it’s only 40 feet to the sanctuary of our backyard, it’s also only 40 feet from all kinds of things that could distract us from our respite. But the very thing that requires the need for rest – this unwelcome cancer journey – also gives us the gift of perspective, making it easier to see the need to make the effort. I think this “paradoxical gift” has helped Susan decide to focus on quality vs. quantity of life – and we are all the better for it.

A Little Slice of Heaven

There are many ways to be a caregiver. All of you are caregivers simply by virtue of following this blog and being part of our lives. Jon and I are caregivers at home. But Patrick, who is now the trek director at summer scout camp in the Colorado Rockies, is providing care in his own special way. For some time, Patrick has been a photographer with a special gift for framing outdoor scenes. The slideshow we’ve added includes photos from his camp experiences last year and so far this year. By sharing them with us each time he comes home for brief periods, we get to experience his world and God’s wonders. Susan envisions that this is what heaven will be like. Who could disagree?

How are you doing?

One of the toughest questions to answer has been this perfectly polite, reasonable, common inquiry that rolls off all of our tongues in all sorts of situations. I don’t really dread the question or wish it not be asked – I just rarely know how to answer it. Most of the time the truthful answer is – I don’t know; or I’m not sure. It brings up a wide array of complex feelings that mirror what this entire journey has been like. It sucks and yet so many blessings have come to light as a result of it. I hate having to do this, and I hate even more that Susan has to do this and that Jon and Patrick have to do this and that all of you have to do this. And yet what else would we all be doing if we weren’t forced to be so aware of the finality of life and our limited chances to live it fully and meaningfully? If you’re like me, you’d be taking most things for granted and getting stressed from the small stuff.

So how am I doing? I’m weary and stressed but I’m also keenly aware of how special my last 31 years with Susan have been – and the five years before that when we knew each other but had not yet discovered we were soul mates. I’m grateful that we get to do this her way and that we’ve had time to plan. It seems so much better than the alternative ways in which we face the inevitability of death. I’m so very thankful for such a huge network of support from the people in our lives. I’m blessed to have had the chance to, in the words of our good friend Martha, “create memories” over the last five years knowing that our time together was more limited than we assumed. I’m grateful that we’re still doing this.

The question “How are you doing?” also calls to mind those moments when my answer varies. We make lots of choices about what we say, to whom we say it, how we say it, and why. Sometimes, if the answer is not really very positive, I don’t want to answer with brutal honesty. The person inquiring may not necessarily want to hear that – or I may not want to hear it coming out of my mouth for fear it will define the rest of my day. Sometimes with some people in some situations, I let go with double-barreled candor hoping that my unfortunate listener is really ready to handle my truth and not regret they asked. But much of the time, the real answer is so complex that we wouldn’t have time to fully explore it.

I think every individual is ultimately required to experience life’s difficulties in very personal ways and the rest of us can really only be present and provide encouragement. We all get to have our turns at it. I sometimes think about all the people I know who have had heartbreaking losses of spouses, children, siblings, and other loved ones; along with the people who have dealt with their own life-threatening experiences. The number is always a sobering reminder that our situation is not special or uncommon – it’s just unique to us. Another good friend, Heidi, gave us a piece of advice that I’ve truly found to be invaluable – “Don’t let anyone tell you how to do this.” Because of course, they really can’t.

So – how am I doing? All in all, I’m doing really, really well considering the circumstances.

How are you doing?

Home Sweet Home

Susan and Jon returned Friday evening from a good, meaningful visit with her parents and family members. Her dad was ill with a very bad cold, possibly bronchitis, so he kept his distance but still managed to participate. One of the highlights of the visit was a two-hour boat ride on Lake Geneva in Wisconsin. Susan’s grandparents once had a summer home there and they located the place where it once was. It brought back lots of childhood memories. Most of the homes are now mansions, and the whole area has interesting historical links to wealthy Chicagoans who have made it a popular get-away spot.

Susan’s mother took her for daily Starbucks fixes – not only because Susan loves lattes, but they also help keep her more alert when she gets groggy. They did lots of clothes shopping together. Susan has started a new wardrobe to accommodate her weight gain from the steroids that she’ll always be taking to control brain swelling. Her mother helped her line some purses that Susan had knitted and they had some good talks.

Susan got to see the lovely new kitchen that her brother Scott and sister-in-law Jan just finished remodeling. They’re glad it’s done. We still remember the duress of our own kitchen remodeling experience pretty vividly. Susan also went out to lunch with Jan and had a great visit with her.

Susan’s sister Barb showed her the memory quilt she’s making in honor of Susan. When complete, it will have 25 squares representing important aspects of Susan’s life. It’s a very nice gesture that Rob, Jon, and Patrick will treasure for years to come. They had lunch with Sandy, a life-long friend who, because of her own losses, lent an understanding ear. Other highlights of the trip included the discovery of a fabulous ice cream shop in Downers Grove. Susan says it would almost be worth flying there just to experience their treats again.

Jon was a stellar traveling companion and Susan reaffirmed first-hand why she could not have traveled alone. He did some jobs for Susan’s folks like cleaning out gutters. But he also got some time to himself. He took the train to downtown Chicago to visit the Art Institute and then a trolley from there to Chinatown.

We had a follow up visit with Jennifer the hospice nurse yesterday to “re-enroll” Susan. She had been temporarily discharged since she was out of state. If needed, Susan had been given a list of local hospice services in Chicago but Jennifer was still available by phone. Jennifer was pleased that the traveling went smoothly and there was no physical decline. However, we all also know how quickly things can change and we feel grateful for every new day.

Patrick left for his summer camp job yesterday and we’re settling back into a routine. Casey is happy that Susan and Jon are back so that he gets more attention from more people. I’m happy they’re back too.

And They're Off!

Susan and Jon left for Chicagoland this morning for an important, final visit to her hometown. She’ll get to spend time with her immediate family and stay in the Given home in Downers Grove where she grew up. She is looking forward to lunches with her sister-in-law Jan, her life-long friend Sandy, and her twin sister Barb. Plans include driving to Lake Geneva in Wisconsin to take a boat ride. Susan’s grandparents used to have a summer home on the lake and the boat will pass by where the house once stood. She has lots of pleasant childhood memories at that place.

It’s this kind of personal goal that has helped Susan maintain the highest possible quality of life – always looking forward to the next important thing. I think most people who know her would agree that it’s highly characteristic of her to be goal-oriented. It’s hard to imagine how her life could possibly be coming to an end when she always has things she wants to do or that need to be done. It is among the great ironies of this experience that even though she is dying, it’s these objectives that continue to make her life even more meaningful.

But Susan’s medical realities make it ever-more challenging to do what she wants to do. Anxiety and memory loss are ever present factors in whether she is having a good day or not. This trip would not have happened with the original plan for her to go alone. Even with Jon going with her, it was a complicated venture. Just packing medications and anticipating airport security issues was a major team effort involving all four of us and the hospice nurse. But that’s an example of how hospice is such a wonderful thing – they make these things possible. However unusual it might seem for someone in hospice to take a trip, this is a critical part of her life cycle – and therefore consistent with the hospice philosophy. Fortunately, everyone in her family knows how meaningful this pilgrimage is going to be and they know what to expect. Just like the rest of us, they’re on the journey too.