Coping with Cancer – How I’m doing it

Once all of my surgeries were out of the way and I was stable and back to ‘normal’, I had the time to seriously confront what a diagnosis of Stage IV lung cancer meant for me and for my life. Ever the student, I decided to enroll in an independent study class so that I could examine the academic literature on death and dying (D&D). I thought that examining what scholars of D&D have to say about the how society has and does deal with the topic might help me face my own fears. The paper that I wrote was ended up following the varying definitions of “The Good Death” in western culture, but included an analysis of several books written, at least in part, by people (or loved ones of people) who were dying (or had died in the case of CS Lewis) of disease. For the interested, these are the narratives that I included in my sources:

*Tuesdays with Morrie: An Old Man, A Young Man, and Life’s Greatest Lesson by Mitch Albom
*The Gift of Peace: Personal Reflections by Joseph Cardinal Bernadin
*Cancer in Two Voices by Sandra Butler and Barbara Rosenblum
*The Cancer Journals, Audre Lorde
*The Body Silent: The Different World of the Disabled by Robert Murphy
*A Complex Sorrow: Reflections on Cancer and an Abbreviated Life by Marianne Paget
*Not Fade Away: A Short Life Well Lived by Laurence Shames and Peter Barton
*Refuge: An Unnatural History of Family and Place by Terry Tempest Williams
(incredible book)
*A Grief Observed by C.S. Lewis

The following themes emerged from my analysis of these books:
1) Existential crisis/Liminality(the person set apart and outside of usual social rules)
2) The dying as sage/warrior/hero
3) Mind/body dualism (a sort of disembodiment, diseased body sabotages the ‘real self’)
4) Living ‘intensely’
5) Seeking the spiritual

By the time I had written the paper, I had experienced one through four for certain. What I hadn’t done is any active spiritual seeking. I have been and agnostic/scoffer for several years now, although I would occasionally attend mass with KB. I have since allowed myself to engage more fully in it.

In the book, Not Fade Away, Peter Barton makes the statement that he started to read and consider more spiritual things to help him not feel so bad about having cancer. This seemed like a reasonable idea to me. The university where I work offers a year-long retreat called Spiritual Exercises in Everyday Life, so I joined.

In his commencement address at Kenyon College in 2005, author and social critic David Foster Wallace stated that all people worship. The only difference is what they worship. Many people worship money and things, good looks or good health, but all of those things are transient and ultimately unsatisfying. I figure that worshiping a loving God, real or imagined, is probably better for me than worshiping anything else. KB and I started attending our local parish regularly. This has opened the door for both KB and I to volunteer, both at the church and at the local food pantry, something I’ve wanted to do for quite some time now. I’ve also become fairly active on www.whatnext.com, an online community for people with cancer. There is nothing that works quite so well to combat being overly focused on or feeling sorry for yourself than attending to other people who need help. I plan to continue this way for as long as I am able.

Happy Cancerversary to me....

First things first - a big shout out to all the people who have helped make my life easier through this past year by their spiritual, mental and physical support. You know who you are. Thanks! Woo Hoo!

I thought at the first anniversary of my cancer diagnosis I would create a very profound blog post, perhaps listing last year's challenges, how my life has changed, and offering up sage thoughts about the precariousness of life and the need to appreciate each new day and the joy it brings.

Yeah - no.

Yes, it has been a difficult year, but I've had worse. Lots of people have had worse. Lots of people DID have worse. One thing that I didn't like about this past year was, well, the cancer. One thing that I did like about this past year is how the awareness of death has made me live differently. In the literature, they call it, "living more intensely" (emphasis theirs). I think I'm just making better choices about what to pay attention to and how to spend my time. It has made for a better life in some ways.

Don't get me wrong. I do NOT think that cancer is a gift as some would argue (some who are at the healthy end of the cancer spectrum, I would argue). I do, however, think that, like so many of the big challenges in life, it can make you smarter.

I'm all for smarter.

Venturing Out

I have found in the many cancer-related blogs that I read that when things are going well for people, they blog less. This is my explanation for my blogging absences. Things have been going well.

I have completed the standard 6-rounds of chemotherapy. The post-6-round scans were very positive – tumor shrinkage across the board with the main lung lesion turning into scar tissue, actual bone healing in most bone lesions and the spot in the liver has been determined to be ‘not related’ to the cancer. Additionally, my quarterly brain scan earlier this week proved to be clear. I am off of all pain medication.

KB and I just returned from a 10-day camping/hiking vacation and two weeks before that, we moved to a new (to us) condominium in Oak Park.

I feel good. Basically energetic with only muscular discomfort in the leg where I had the surgery.
It’s enough to make a person optimistic.

Wunder Doc seems really optimistic as well, telling me that my therapy could keep me going successfully for years.

Although I feel a real need to mentally prepare for a possible premature death in order to handle it with grace, I’ll take the optimism.

Hope is a good thing.

Dreams

"We are such stuff as dreams are made on, rounded with a little sleep". ~ Shakespeare, The Tempest

Last night, I watched the PBS program NOVA wherein they looked at dreams (click HERE) http://www.pbs.org/wgbh/nova/body/what-are-dreams.html

It is an interesting program with alternatives to the usual Freudian view of what dreams are. What it did for me was prompt memories of some unusual dreams that I have had around and after my cancer diagnosis. The interesting thing about all of these dreams is that they offered a source of comfort in regards to death. I’ll narrate them in reverse chronological order. It is important to note that my diagnosis was in October of 2010.

January 2010 – I was walking around this huge, old house – a house that I have ‘visited’ many times in dreams throughout my life. At one point, I was in a smaller laundry-type room with silver, round heat ducts around the ceiling. I noticed a thick layer of dust and dust bunnies on top of the ducts, so I decided to clean them. I stepped up on top of the washing machine and as I was reaching up to dust, my cat Ernie (dead in real life) jumped out into my arms. He was very disheveled and covered with dirt and dust. He clung to me like he hadn’t seen me in a long time. I petted him and tried to soothe and calm him. I gave him and bath and fed him. I then turned him over to ‘someone’ to care for him until I returned. There were also several black people in the house. It occurred to me that the house belonged to them although no one seemed to mind that I was there. One of the people there was Gary Coleman (dead in real life). ---I woke up feeling like I had found my lost cat and would be returning to wherever he was at some point, but until then, he was taken care of.

November 2010 – My husband and I were at our local watering hole. We were standing talking and there were a couple of other sort of faceless people around who we were talking to. Then what I took to blonde-headed woman with shoulder-length hair came up and was looking at me like she knew me. She looked very excited to see me. Someone introduced her and as I looked at her, I thought that she looked more like a man, although the gender was definitely ambiguous. She/he came closer to me and took my hand. Once in that grasp, I felt very happy and very loved. She/he smiled and said something to the effect of, “Okay, it’s time to go,” and led me out of the bar. As I was leaving, I gave thought to Keith and what would happen with him, but I felt comforted that he would be okay. As soon as we opened the door and hit the sidewalk, everything got very bright so that I could see nothing but the brightness.

March 2010 – I was walking on lawn approaching a white farmhouse. It was very tidy and bright with black shutters. The lawn was a very bright, vivid green and the sky was blue. There were a number of very old (tall) trees around and it was very quiet. As I walked closer to the house, it seemed to get larger and I sensed that there were many people living there. As I continued to get closer, other similar houses appeared in the distance and they all seemed to get larger. It occurred to me that this was where all of my ancestors lived and that I was here now, too. I began to feel a sort of release or letting go accompanied with a relaxing sort of feeling – sort of like the feeling that you get when you relax in a hot tub when you are bone-weary. As I started to let go, it suddenly occurred to me that I must be dying. I took a sudden sharp breath and woke up.

One could argue that the first two dreams that I have listed are in response to my diagnosis – my brain attempting to reconcile and come to terms with the knowledge of my diagnosis. The one from March is a bit trickier. I’d love to believe that these dreams were given to me to offer comfort instead of something that my own brain came up with so that I don’t go totally psycho. I like the thought of a something or someone out there who, even if they don’t do anything about the bad things that happen in the world, will offer bits of comfort to make the bad things in life easier to tolerate. Sort of an impotent view of a god-like entity, I know. But I think when you’ve come to terms with something unpleasant in your life that you know will continue, and you’ve decided (or have no choice but) to tough it out, a little comfort from a benevolent entity is a pretty attractive thing. In some people’s opinion, that’s how the whole concept of God/gods was created in the first place. But if it is merely my own brain, does that mean that I am essentially my own God? That’s a disturbing concept.

I would totally suck at being God. Too much pressure.

Occasions of Reality

It seems to happen at night. Usually I can call it chemo-induced insomnia, but perhaps it's just the dark and quiet lending itself to contemplation, but whatever it is, and tonight is one of those times, when I have occasions of reality - that is, the settling of my mind on what is really going on and what is likely to happen to me, to my life, and to those that I love.

Before this last chemo round, my wunder-doc told me that many people stop after four rounds, unable or unwilling to tolerate the final two in the prescribed course of six. She told me that studies show that those who undergo all six live longer and she suggested that, due to my age and health, I continue.

Live longer.

Don't get better.

Don't get cured.

Live longer.

And I've known this all along...that treatment is simply delaying the inevitable, but something about that conversation in the quiet dark of this one night struck a rather unsettling cord with me.

And I start to think about five years.

I will, in all likelihood, be dead within five years.

(Actually less, if you consider that it has been not quite eight months since my diagnosis. By the way, 50% of people diagnosed with stage IV lung cancer ARE dead within eight months, so I guess there's something to be thankful for).

So what does one do with that?

It's hardly practical for me to quit my job and spend my time traveling or spending time with family. You do have to live until you die. But perhaps some reconnoitering is in order. Some re-evaluation of what I do with my time, versus what I want to do, or try to do, or accomplish. Not to be cheesy, but a bucket list, if you will (although they did some stuff I would completely not be interested in in that movie). Something more based in reality - simpler, something actually do-able.

Maybe making the list will help me get some sleep.

SODD it! The Sociology of Death and Dying

Today, I have officially begun the long (I'm sure by the end it will seem very long) slog through the literature of the Sociology of Death and Dying. I have enrolled in a directed readings class for the summer and, due to the unfortunate fact that I have advanced lung cancer, I thought it well and good to examine my discipline's examination of the topic of death and dying. The idea is to focus specifically on the social aspects of terminal illness - those who have it, those who know those who have it, those who don't have it, but define those who do, and whoever decides to jump into the pool.

Death is sort of an odd thing in our (western) society. We both revel in it (in our news casts and television programming), and hide from it (When was the last time you had a discussion with anyone about death? Not a particular death, but just death? The fact that we will die and what will that be like? Chances are, it has been a while, if ever). So the death of a someone of whom we can speak of as a sort of topic of conversation is okay, but actual death, the fact that we are all going to die at some point, is not quite as attractive a topic. I like to think that if we spoke about actual death more, it would become easier and perhaps instead of fearing the topic, people might find comfort in it. I, of course, could be dead, dead wrong - no pun intended.

On a slightly different topic, since my diagnosis and general acceptance of my cancer, I have been frequenting a variety of cancer blogs - that is, blogs written by those who have cancer. Usually, I look for folks with cancer types that are known to have particularly bad outcomes like mine. I can't help but think there there are differences in the thoughts and experiences, however subtle, between having a cancer where there is a 14% 5 year survival rate, and one with a 97% 5 year survival rate. Anyway, recently, there seems to be a run on my blogging cancer people who are at the end of their treatment options and are either months from death or who have died fairly quickly. One was told on April 22nd that any more real viable treatments were over, she accepted it and was dead by May 3rd. Yuck - Scary - Lonely - Bad on the one hand.... Calm - Happy - Peaceful on the other. Weird dichotomy, I know.

Let me see if I can accurately describe the latter - I do think that, in an odd way, it's good to know that you have a condition that could cause your death much earlier than you had ever anticipated. Because of my incredible family constitution, I always assumed that I would live to be well into my 90s - perhaps even reach my 100s, in relatively good physical condition. I was living as if I would never really die - the idea of death was so far removed that I was living my life in a pretty superficial manner. Small things bothered me. I suffered from depression, often from really stupid things that I took too seriously. I was just led along in life without pay much attention as to what direction I pointed myself. Because of my social location, education, white female, and the relative wealth of the west, one really doesn't have to pay attention to politics or social problems too much. Prices and politicians rise and fall, but day to day survival itself was very simple. Consequently, I was not living on purpose. I won't say I wasn't TRYING to live on purpose, I was, but what was missing was the reality of death...the knocking on the door, living in your body, making you unwell reality of death. Although my survival today is still simple, it has, on and off, been less so. It is also quite likely that as the cancer progresses, my survival will become less and less simple until I simple stop doing it...surviving, that is.

I guess, in an odd way, cancer has forced me to pay attention to life. "Time gets kinda precious, when there's less of it to waste." (Bonnie Raitt). I listen more. I see more. I weigh things more carefully. I am less flippant. I laugh more. I love more. I am savoring life and I am happy.

Round Four ... *whimper

Last Friday was round four of terrible, awful chemotherapy. I'm not sure what went wrong or, more fairly, what went differently from the last three times, but boy was I out of it. The first couple days it was the usual fatigue and falling asleep sitting up while everyone watches me drool into my lap while they snap photos for their Facebook accounts. Day three, however, led to a high level of nausea and several bouts of vomiting, followed by more sitting-up-sleeping and drooling. I feel a bit better today, but I'm not sure what happened - why the difference from previous rounds - I tried to keep up on the anti-nausea pills and get out and walk, drink plenty of fluids, blah, blah, blah. I'm hoping that this doesn't mean that following rounds will be even more unpleasant.

On a more sad note, there are a number of cancer-related blogs that I follow and things aren't exactly rosy in cancer-blog world. Deaths and decisions to stop treatment seem to be peaking in number and with them, the sadness of those of us left behind in Cancer World to wonder if and when it will be our turn to make those sorts of decisions and write those final blog posts.

Kübler-Ross is the one who came up with the stages of grief and honestly, I sure wish that it was a more linear process. There are sometimes I think I have come to some sort of peaceful idea about death and can sit on it peacefully for quite some time, but inevitably, it slides back into some sort of frightened panic of one degree or another. Why can't I just stay with acceptance, even if I have what could be a significant portion of time left?

"What a treasure I have in this wonderful peace, buried deep in the heart of my soul, so secure that no power can take it away, while the years of eternity roll." - Warren Cornell

Forgive my dip into Methodism.