A Susan Health Update

It’s time for an update on Susan’s physical, emotional, and spiritual health. Some of what I tell you is brutally honest, but she wants people to know these things and has asked me to be frank. It turns out that the process of dying is more complicated than we imagined. She is not bed-ridden or home-bound. She has no tubes or needles entering or exiting her body. In most ways, you wouldn’t know this person is dying, let alone in a hospice situation. But the reality is that she is slowly declining both physically and emotionally. The good news is that her spiritual health has probably never been better.

Physically, she has the tell-tale “moon face” (which she hates) of someone who has been on steroids for a while and she uses a cane or walker outside the house. But beyond those minor observations, you might not realize all the other things that are going on. She does her hair and nails. She wears jewelry. She is as impressively well-dressed as ever. On any given day, she’ll have periods when she feels well and enjoys knitting, reading, or listening to a book. But she’ll also have periods of fatigue or discomfort. Afternoon naps have become an important way to conserve or renew her energy. She has to limit the number of things and people on her daily agenda (very hard for her). Too much to think about saps the energy right out of her. Issues with fine motor skills have affected her hand-writing and the handling of small objects (like pills). She has neuropathies in her feet that come and go but are coming and going a little more often. Balance and mobility have decreased (thus the cane or the walker) and her left foot won’t cooperate when she walks. She is mostly pain-free (due to regular baseline pain management) but occasionally has severe upper abdominal pain that requires additional narcotic intervention or scalp pain near where the pins of her gamma knife “helmet” were attached. Some time ago, her colon stopped working normally and finding and maintaining the right balance of substances to prevent great discomfort from either unwanted extreme remains elusive. She lost most of her ability to salivate and some of her taste from earlier radiation treatments. Combine all of that with short-term memory loss and occasional confusion and you’ll get an idea of what things are like for her on an on-going basis.

Emotional health is also a struggle. The prednisone is partly to blame because not only does it produce the despised “moon face” and weight gain, it also sets the stage for an emotional roller coaster that can find her angry and grumpy one minute and crying the next. For those who know Susan well, you know that she has always been a self-directed, “in-control” achiever. To lose so many physical abilities and to let go of things she can no longer manage is extraordinarily difficult for her. Jon or I need to be with her when she takes her meds to explain why this or that has changed, to help make sure she’s taking the correct day’s doses, to find the ones she drops, or to just keep her focused on the task. She hasn’t driven since late April or early May. During the periods when she is feeling reasonably well, it drives her nuts to be dependent on others (primarily Jon and me) for transportation. At other times, she realizes why things are the way they are. But for this highly intelligent, capable, accomplished person – it sucks. In addition to the fatigue, over-stimulation causes anxiety. That’s why you rarely see her in large group situations any more. She likes occasional short intimate gatherings although they are taxing.

But just as she has declined in physical and emotional strength, her spirituality has grown with this experience. Everything that is happening to her is supposed to be happening in this process – and she knows it. While so many others among us are avoiding the subject of dying and death or resisting it in angry denial, Susan is facing the end of her life with firm resolve to leave the rest of us more enlightened for the experience and to leave a legacy for the grandchildren she’ll never meet. She has a quiet confidence that her life has been meaningful and she looks forward to discovering how it will continue in some way beyond her earthly existence. When we gather at Montview for her memorial service, we will have no trouble acknowledging our grief, but we will be equally passionate about celebrating her life. She will have shown us a way to live and a way to die that will enrich our own journeys in life and in death. Anyone who spends time with her can easily acknowledge the sadness of her physical and emotional decline. But one can also discern - just beneath the surface of the obvious symptoms – another deeper, ultimately more important reality about our existence. We have to look past the sad stuff to experience it but it’s there. It’s uplifting and inspiring and it calls upon us to grow our own spiritual awareness.

So in that all-important sense, I’m happy to report that Susan is well.

Questions about Courage, Hope, Faith, and Love

Many people have used the word “courageous” to describe us on this journey, especially referring to Susan. The affirmation is as deeply appreciated as it is confounding. We don’t feel particularly courageous or heroic or anything else. We often look at each other and wonder what other choices do we have? How else would anybody do this? Who would you not call courageous?

The dictionary defines courage as: Mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty. OK, I guess we have developed some of that. But the question remains: what else would we be doing otherwise? What would people who lack courage do?

The opposite of courage is “cowardice” meaning: Lack of courage or resolution. Not much help there. But the term “lack of” does suggest that courage and cowardice can be displayed in degrees. So where are we really on the scale? What is “average” or “par” or “acceptable” on the courage scale? When does courageous behavior slack off enough to become cowardly? And who’s got the scale? What do cowards do?

In some sort of dangerous situation, cowards could be expected to run away. But running away doesn’t seem to be an option here – at least not for Susan. The closest thing to it is probably denying the reality of a situation. We probably all know people who seem to do that. But how do we know someone’s “denial” isn’t their sense of hope or faith – and isn’t that related to courage? Since we know that a person’s outlook affects his or her health and well-being, who gets to decide when someone’s hope (or faith) is out of whack or unrealistic? Is false hope “false” just because we think it is? Is clinging to life an act of cowardice or courage? What about letting go of life? Journeys like this present all kinds of courage vs. cowardice moments: getting the diagnosis (particularly if it’s incurable, like melanoma); deciding what clinical trials to try; deciding when the toxic results of treatment are worse than the end result of the disease; handling the side effects from damage already done; deciding when and how to prepare for the end of life. We’ve come to understand that the “right” answer is deeply personal. When Susan decided it was time for palliative care, our pastor Bill told Susan that she didn’t choose death, she chose life – and to be fully alive each moment of the day. This is why our friend Heidi said “Don’t let anyone tell you how to do this.”

In his famous first letter to the Corinthians, Paul writes about faith, hope, and love enduring forever. Indeed, these circumstances force one to contemplate things like spirituality, relationships, dying, death, and eternity. Our culture, particularly Western medical culture in the last century or so tends to regard death as a failure to survive. If that’s true, then aren’t we all doomed to failure? Susan’s oncologist points out that as much as we’d prefer to live to a healthy old age and die in our sleep, it only happens that way for some people. Who do you know that hasn’t experienced the unexpected, premature, or otherwise unfair, agonizing death of an acquaintance, a friend, or a loved one? Don’t we all have some experience with this reality? So why do we as a society consider death to be such a failure? Why do we tend to put off our reconciliation with the inevitable until it’s either undeniable or too late? Is that cowardice and avoidance of pain, or is it simply our instinct to survive?

One of the blessings of a long journey is coming to terms with all of this. It’s an evolutionary process that involves gathering as many facts as you can and blending them with as many possibilities as you can imagine and testing them with your own developing beliefs. We’ve had a lot of time to do that. Much has been written about this. A few of our favorites are referenced on this blog. In particular, the book “The Anatomy of Hope” has been helpful to us.

If you think we’re courageous, please don’t stop telling us. It really helps to hear it. But also ask yourself what you’d do or what you have done in similar circumstances. Wouldn’t it be similar? This is an amazing opportunity for us all to reflect on our humanness and be more aware of the meaning of life. I suppose it takes some courage, and a good deal of faith, hope, and love to face that.

Expressions of Love

People demonstrate love in lots of different ways, and not always with words.

Susan’s sister Barbara completed a memory quilt in honor of Susan which you can see pictured to the right and also in the “Susan’s Family Album” slideshow. It has 25 squares representing some of the most important things in Susan’s life. Looking at it from right to left and top to bottom, here is the meaning of each creation:

The hummingbird is a symbol in the Melanoma community, known as the “Wings of Hope”. You can read the story on the Melanoma Research Foundation website. A link to it is in the lower right of this page.

Ever since our first trip to Alaska in 2004, we’ve loved the moose image. In various places around the house, we have stuffed moose, carved moose, moose sculpture, moose t-shirts, a moose apron, and even a moose bird-bath! A moose had to be in the quilt!

Susan’s gardens, developed over our eleven years in this house, are her pride and joy. They’re an important part of our backyard sanctuary, along with the bird feeders and the bird bath. We love Barbara’s design and the fact that she even included a watering can!

Lattes and Dairy Queen Blizzards are staples. Aren’t they for everyone?

Susan has always been interested in crafts. For a while during this journey, Susan did beading and accumulated a large inventory of necklaces, bracelets, and other items (such as purses) adorned with beads. She has always had good taste in colors, clothes, and accessories – but with the beading, she demonstrated unique artistry.

Downers Grove, Illinois is the place where Susan grew up. It’s also where she and Rob first met.

The Given family of Downers Grove, Illinois.

Knitting is another of Susan’s crafts and one which she still pursues. In addition to her artistry in color and design choices, she finds it therapeutic.

Susan’s professional life was always focused on science and health care. Our proudest moments include the completion of her first nursing degree followed by a rewarding career in public health, particularly women’s health where she developed subject matter expertise in the uninsured/underinsured population. She was unable to complete her Master’s Degree curriculum due to her diagnosis, but she received an honorary master’s degree with the rest of her graduating classmates.

Susan and I have been involved in musical theater from the very beginning. In addition to leading roles in shows such as “The Wizard of Oz” (Wicked Witch) and “Nunsense” (Sister Hubert), Susan worked on costumes for many productions.

Our first son was named Jonathan or “Gift of God” by his grateful parents after several years of anxious efforts. Thus the great parenting adventure began!

On the other side of his mother’s name is Patrick or “Nobleman”, our second gift from God. He added a whole new dynamic to the great parenting adventure and now we are the enormously proud parents of two fine young men.

Our first trip to Alaska came shortly after the Stage IV diagnosis and was funded by a wide circle of wonderful friends. Our second trip was a cruise along the Alaskan coast last summer. Barbara’s design is beautiful and shows one of the unique topographical features of that latitude – high treeless mountains near the sea.

Our souls have been connected to each other and to Montview Boulevard Presbyterian Church in Denver since 1977. Even when we lived away from Colorado for eight years, our spiritual and social centers were still rooted to Montview. It is a very special place with very special people.

The Moody Family of Colorado.

Our wedding date. Other special dates we recognize include the summer of 1972 when we first met, and April of 1977 when we first realized we were in love.

This square depicts Casey whom we’ve had for almost two years and our beloved Sam, who died in January of 2008. We adopted Sam in 1996 and he forged a new place in our family which Casey now holds.

For our 25th anniversary, Susan and I treated ourselves to our first cruise – a New Year’s spree in the Caribbean. The Caribbean was a lovely place to revisit (we honeymooned in Cancun), and we fell in love with cruising!

Not only is Montview Church at our core, but Westminster Choir is where we have spent much of our time and where we have forged many of our life long relationships. Both Susan and I have been soloists in Westminster Choir concerts and in church services.

Our address is Aurora, Colorado, but we think of ourselves as Denverites.

This is the first verse of a poem I wrote for Susan called “Soul Mate”. One of our choir friends, Sarah, has put it to music and it will be performed at Susan’s memorial service.

Our second cruise was a wonderful voyage around Europe from Rome to Copenhagen. The picture is modeled after a Holland America ship, our favorite cruise line.

There is a reason why we live in Colorado and one of our favorite hangouts, and an icon of living in the Rocky Mountain Region, is Estes Park.

We deeply appreciate Barbara's beautiful designs, her handiwork, and most of all the love that went into this.