There are times that I sit in my condo quietly thinking
about, pretending, that it's a normal Sunday. That I'm just resting to prep for
a long work week ahead. That in a few more weeks I'll be going somewhere crazy
like the alps in Europe to go paragliding. Or go hiking in Colorado, or camping
in Montana. I dream about the day that I'll be strong enough to actually
achieve these dreams. But in the mean time I stave off the intense nausea and
just try to make it to the next minute without puking. Or try to ignore the
pounding headaches that come intermittently. I go in for IV fluids regularly.
This usually makes me feel a lot better. But in the meantime this immense
discomfort is my life as I know it. It’s hard not to make this emotional. My
physical being often translates into an emotional reaction. I get upset. I cry.
Then I try to calm myself. Sometimes the only reprieve is sleep. So I drug myself
into dreamless oblivion. But I always wake up. Most of the time right back into
the same uncomfortable state I was in before. But at least I get a break. And
there are the few times that I feel better when I wake. There's always that.
Just when I think I've got my feelings in check, the fear
creeps up on me. Barely there, so I don't know it even has a presence. Then
slowly, bit by bit, it rears its ugly head. It takes everything I've got to
keep it from going full crazy, but I do it. This time I felt it come on when I
was told I needed to go on blood pressure medication, that I was getting a blood transfusion, and
that there are some clinical trials they're keeping in mind for me. It all
means that the clock is ticking. My body is wearing down so it needs more help
and the options for healing me are now in an experimental phase. Scary and hopeful
at the same time. It's what comes next when it's all they can do. The way I see
it, I'm on borrowed time anyway. I've had longer than was expected, so I should
be thankful. And I am. But it doesn't shut out the want and need for a bit of
peace of mind. If only...
I don't need to be told that this is what it means. It’s
easy enough to figure out. But I also know that Dr. El Rayes is going to bat
for me. He's got my best interests in mind. It's him, his PA, and his nurses
that keep their eyes on my well-being by constantly making sure my nausea is in
check and that I’m getting plenty of fluids. That the side effects are under
control. Even when I’m not complaining about them. They know to check on me because
of the staff that look after me. They even did more tests and discovered that
my body was starting to make more blood, so the transfusion was unnecessary. He
took my case to the tumor board twice to discuss my possible treatment. It is
comprised of some of the leading oncologists
and surgeons at Emory. This board meets once a week to discuss 10 cases. He
felt mine was important enough to discuss twice. Out of all the people getting
treatment in one of the best cancer centers in the country, mine was a case he
chose to share with his colleagues. I am humbled and have an incredible respect
for these people. And I have tremendous gratitude for it.
I long for the days where the anonymity of good health gave
me ease of spirit. Living on the edge of this microcosm of pseudo celebrity due
to how public I've been with having cancer has mostly been a blessing. But I
wish there was some way to turn off the attention sometimes. I find that people
mean well. They only want to be supportive, but I think I speak for most of us
dealing with this disease when I say that sometimes a normal conversation is a
welcome minutes long vacation from the life we are currently living. I go out
every once in a great while when I feel good enough to do so. When I long for
social interaction.
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| Raising Arizona chemo |
I began this blog because it was too much to tell my story
to people over and over. I needed a way to tell people one time without telling
the story repeatedly. It’s been good for that. It then evolved into helping
others understand what people in my position go through. Those of us who are
fighting against cancer invading our body and permeating our thoughts. I
realized as I continued to write, that people were actually listening, that
they wanted to know more about cancer.
About what we go through and how their actions affect those of us
dealing with it. I feel at this point that it's my duty to let you know things
about cancer that you wouldn't normally know.
Things that all of us have been in the dark about. Those of us who didn't know enough about how
bad that this disease really is and how widespread it is, are open to the
knowledge.
I'd like to tell you about cancer language. How it influences
us. The things that you say and what they mean. The disease is hard enough, so
let me tell you how to speak to me or anyone dealing with this illness and what
kind of reaction it invokes. At least within me. Because the things that you
say and do affect us.
There are times that I feel burdened with the responsibility
of making others feel comfortable that I am sick. Please don't tell me how
difficult it is for you. However difficult it is for you, it’s a lot worse for
me. When you go on with this type of talk, it can be stressful. This is not
something that I am good at. Not for myself anyway. Maybe for those that I'm comforting. This can be very taxing to do repeatedly. I
appreciate that you have feelings about
the subject, but I’m not sure how I can make this better for you without making
it hard on me. If you feel this way, maybe offer me a hug or let me know if I
need anything, you’re happy to help. I
have a tough time trying to make you feel better about my illness.
Please don't ask me if I'm OK. We both know I'm not. I have
Stage IV colon cancer and have chemo every two weeks. I have good moments. If I
look like I’m doing ok, then I am at the moment. If I’m not, I have the wherewithal to remove
myself, or ask for help. The incessant
questioning only makes me feel distanced from the normal life I so long for and
only touch upon on occasion. A prolonged "How ARE you?" with an overly
concerned stare falls in the same category.
Please don't tell me about every person that you or anyone
you know, that has died from cancer. This is not a good topic to engage in with
me or anyone else with a cancer diagnosis. I don’t know how to respond to it
and it really makes me feel like you look at me like I’m a walking corpse.
Please don't tell me about every treatment that every other
person with cancer has gone through. Every cancer is different and is treated
as such. It’s based on type of cancer, what stage it’s in, genetic testing, what
the individual is capable of handling, and more. I have been going through this
since June 15, 2016. I have and am continuing to explore every option. If you
think a certain treatment is worth me looking into, feel free to send me a link
or article. I’d love to read up on it.
Don't look at me with pity. I can see it in your eyes. It’s
one of my biggest pet peeves. It’s a
sure fire way to create distance between you and me.
If I'm out trying to have a good time, don't go into a long
diatribe about how I should be handling this. For example - my diet, alternative
treatment, the drugs I need. I'm trying to escape it. Even if just for a night.
Tell me you'd like to talk about it with me another time. I'll be happy to
discuss it with you when I'm not at a party, at a concert, or being social.
Do smile at me. I promise I’ll smile back. I love that.
Joke around – it’s ok. I like to laugh. I’m sarcastic and I
love a good sense of humor.
Hug me. Not excessively or dramatically, but like you would
anyone else. I remember what it’s like to see my people and say hello or
goodbye with a hug. I promise you can’t catch what I’ve got.
It’s ok to give a kind word about it. Just don't go on and
on. My cancer is not about you. I will
shut down and be thinking about how to get away from you.
What I’m saying is that I'm still the same person despite
having cancer and everything that goes with it. I never expected that it would
become what it has with the way that I’ve chosen to cope with this. I choose to
be open about the journey to help you and me understand it. Don't get me wrong,
I expect some conversations about it. It's often sweet and I am moved by the
concern and support. It gives me strength to keep being strong mentally, when I
can’t be physically. Everything that I endure puts a strain on me. So for the
first time since this has invaded my life, I’m asking for your help to get
through this and help others with cancer get through it with a better way of
communicating. There's a way to speak to those of us dealing with this. It's
with encouragement. Or normalcy. Look at us as the friend we are. The friend
you used to see us as. Not the person with cancer. We will respond to you in
turn, a better way. Though we suffer, we are not the disease that plagues us.
My hope is that through more dialogue that we can ease the
burden that cancer causes in everyone touched by it. Including those of us that have it and those that love someone with it. That when I give the
details of the treatment that I go through and the emotion that is triggered
with my experiences, that you will have a bird’s eye view of what it is like.
That it somehow gives enough insight to stimulate compassion for each other. We
humans are capable of some incredible moments of beauty. I see it every day.
Sometimes we need encouragement to understand the right way to treat each other.
I welcome it, I believe if we give each other the right direction, our worlds
will fill with more honesty, ease of mind, and love. I think we could all use
more of that.
The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering. ~ Ben Okri
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