Sharing my thoughts on having cancer and dealing
with end of life issues does not mean that I will be as free with information
about other people as I am candid about my process. Since I just got some news
that would be crucial in the process to anyone one else who may be aided by
this blog, I have decided to keep it open.
After my surgery that found tumors on the chest
wall and in lymph nodes, a PET scan was taken. It showed some activity on the
liver that was verified by an MRI. I know what this means. Once the cancer
attacks an organ, it reduces the amount of time you traditionally have to live.
I have opted to go into a clinical trial if I qualify as opposed to getting
chemo that may kill the cancer in the liver for a while but will never cure it.
The clinical trial may produce worse results but on the chance that it may
produce better results, I'm giving it a shot. In every single thing I read or
watch, cancer that has spread is synonymous with a death sentence.
I've done everything I can to get my finances, property, and insurance policies
in shape and communicated. I've even cleaned all the closets. However, knowing
something and accepting it are two different things.
I find myself getting caught up in a TV movie or memories I relive when I hear a favorite song. After the movie is
done or the song is over, I get hit in the face with reality again. The world
looks the same as it always has but it no longer includes a place for me. I
don't feel sick like I do when I'm in the middle of chemo so what is playing in
my head doesn't fit with my sense of reality. I look normal (except for the
god-awful scar running across my chest where a breast ought to be). I actually
feel good. I have more energy than I have had in a long time. I've been able to
get things on my "to do" list done. The house is finished. I still
have some things to go through in the garage but overall, I've taken care of
most of the things I needed to get done. Now what do I do?
All I have ever known how to do was to get up, pack
as much into a day as possible and go to sleep. I habitually have packed too
much into every day and was sleep deprived for most of my life. Sleep has
always seemed such a waste of time to me. It never helped me to cross anything
off of my "to do" list. Now that I can sleep all I want, I don't want
to for fear I am wasting some of the precious little time I have left.
However, I don't really have anything productive to do with the time I'm awake.
I realized that we all seem to live by trying to
deal with whatever is happening today in conjunction with long-term goals. This
whole system falls apart when you no longer have any future goals. Organizing
stuff, worrying about money and insurance policies, and trying to budget
everyday expenses all depend upon how long I will live. It would be
better monetarily to die before next June when my $200,000 policy comes due. If
I'm going to die sometime, why not do it as soon as possible to maximize
insurance money? I really don't think I would value a few extra months more
than I would knowing that John and the kids would be taken care of. You
really don't get any practice in trying to live with no future until it's too
late to get good at it. Even lifers in prison develop a plan for the future, even
if it has to be a future in prison. What does it mean to make the best of your
last few months or years?
This is truly an exercise in living in the moment.
The only value today has lies in how today was lived. There is no reward for
delayed gratification. If I can meditate, pray, exercise, get outside, go
through the mail, keep up on bills, clean something and make love to my
husband, I've hit all cylinders. That's a good day. There are certainly
other scenarios that also qualify as a good day such as making it to the beach,
taking the boat out, visiting family and friends, doing something new or seeing
someplace we've never seen before. Sitting around being depressed is not an
option.
Nevertheless living in a state where there is no
future is truly a strange thing to experience. Part of everyday experience is
long-term planning, looking forward to something, expecting to see
grandchildren grow and enjoy retirement with someone you love. John and I can
do whatever we want now but only for limited periods of time as our schedules
are tied to doctor appointments and therapy. We are also restricted by how I
feel.
John has Parkinson's. Before the cancer, I thought
about how I could help him get the most out of his immediate future before the
Parkinson's limited his physical abilities. Now I see a man, who doesn't even
acknowledge he has a serious disease, do all he can to take care of me. I
won't be here to take care of him. I worry a lot about what his future will be.
I simply don't know how to live like this. By the
time I learn, I'll have run out of time. I wish I could figure out a way to do
research on this time of life. With all of us baby boomers facing death in the
next 20 or so years, it would be important research. I could write a book,
"How to live without a future," "The Last Blog (parody on The
Last Lecture)," "This is it - face it," "Top 10 steps for
life while you wait for death," "This is how to live now."
I'd buy any and all of those books from someone who had enough time to
figure it out so that I didn't have to waste any of my time figuring it out.
I had to go to the emergency room a couple of weeks
ago because of an excruciating pain in my groin. I assumed it was a kidney
stone because people describe the pain as worse than labor. It truly was the
worst pain I had ever felt. I thought it was an appendicitis, or kidney stone,
or part of an IVC filter that had broken off. The PET scan I had taken of my
liver showed some metabolic activity in the groin area but stopped short of taking a
big enough picture of the area for diagnosis. Most likely it is another site of
metastasis. If that is what cancer feels like when it starts to devour the
body, I want to be put out now. Most people I've known who have died of cancer
are pretty doped up just before they die. Now I know why. When my friend Toni
died, her kids where running all over town trying to catch the visiting nurse
to get more pain meds from her as they didn't have enough at the home to ease
her pain. That is my biggest fear. I would love to die at home but if I go to
the hospital, I will always have access to painkillers. Tough choice.
So this is how I live now. I ponder access to painkillers, insurance
premiums, bills that will outlive me, parents and a husband who will need care
and who will outlive me, the efficacy of clinical trials versus traditional
treatment, and the realization that even enjoying the moment requires a promise
of a future to avoid being drowned in the sadness of experiencing that moment
for the last time.
