“How do you do that?” He asked.
“Do what?” I was confused.
“Make lemonade out of lemons?”
It seemed like such a strange thing to say that it took a
minute for me to register it.
It didn't feel like I was making anything into anything
else. I know that my entire life has been driven by creativity, and no illness,
no matter how dire, would ever take that away from me. I know that being
creative always takes me to a sacred place. A place that could never be tainted
by pain, sorrow, or hardship. When I create, I am safe. It is a place where all
of me stands as I always was. Not broken or weak. Not partial or faded. Not
sick. It is the safest place for who I am, because it will always be all of me.
No matter how I feel or look or am physically. It is where I am whole. So when
I am only a shell of the person I was, I escape to creativity and I find myself
there. The pieces that are missing find their way back to me. The broken bits
that have fallen off as I fight this horror. I remember the things that exist
in this world that chemo and cancer can’t take from me. And that is beauty. The
beauty I create and enable. That is untouchable. That is the core of who I am,
my happiness, and who will remain. No matter how broken I become.
I was doing well. I hadn't really felt much pain in months.
I ended up skipping one chemo to just take a break. Then all hell broke loose.
I began to feel pain chronically in my lower abdomen again. Where my tumor is.
It wasn't going away. Then another pain made itself known. It was incredible.
It was at my stomach. High in my abdomen. It was so intense that I could do
nothing but cry and wail in response, curled up in a ball. My father wanted to
take me to the emergency room and I fought him. I knew what the ER meant. It
meant hours of waiting. It meant tests, it meant exhaustive questions and hours of being a pin cushion. It meant blood draws. And days, maybe weeks of bruises, weird tell tale signs, and evidentiary marks on my body. It could also mean relief. When I finally relented, the pain became much milder. We
had actually made it to the ER when the pain subsided. So we went home. I woke
the next day to more of the mammoth pain from the night before. I called my oncologist
to ask for advice. I was told to go into the infusion center for help. He recommended
that I do so before going back to the ER. They took me to a room in the back
and accessed my port. They gave me IV pain meds, but when my blood pressure
reached 220 over 121 they called the emergency to bring a gurney. I was admitted
to hospital after they brought my blood pressure down to some semblance of
normal. They wanted to make sure I wasn't having a stroke or stomach ulcers.
Which meant a bunch of tests. A CT scan, stomach x-ray, an ultrasound of my
abdomen, an upper endoscopy, and a biopsy of my stomach. They found nothing. I
stayed that time from Tuesday to Thursday. I was released Thursday night around
9:00 pm. I went into see Dr. El Rayes the next morning. He said since the tests
that were performed found nothing, he could only logically assume that it was
the cancer causing all the pain.
I had to let that information marinate a bit. That my cancer
was causing pain even though there was no sign of cancer in that area. My body
was so out of whack that there was pain for no reason. This cancer is a beast.
I went back home and within hours of eating, the agony had come back. I went
back to the ER where they stabilized me again and were going to release me, but
my dad refused. He told them they needed to admit me. Which they did. I was
there for another 5 days. So they could control my pain and vomiting. They did
more tests and found nothing. But then I got pneumonia. Another setback. I
couldn't get chemo until it was gone. So I got sent home with antibiotics. When those were finished, I finally was well
enough. I knew getting chemo would help fight the pain. So I
got prepared and hoped for the best.
I started my new chemotherapy drug. I had thought about it
and realized that a six week break from chemo was not going to be beneficial
moving forward. I was right. It was horrible. I'm in constant pain. Though it’s
a different one than the one that took me to the ER and into the hospital for
days. So I guess it’s good that the stomach pain is gone. I can't eat. When I
do, I vomit uncontrollably. I'm persistently nauseous. I don't know how to
exist feeling this way. I wonder if this is normal. I wonder if this is killing
me. I wonder if I can do this. Be strong. I keep telling myself that. But I
don't know if I can. This constant ruination is brutal. It's getting
to the point that I can at times compartmentalize my emotion. If I can be
objective about the pain and nausea, then I can be more affective in dealing
with it. If only I could do that all the time. I keep wanting to forget that this
disease wants to destroy me. Maybe if I don't pay attention to that part then
it won't be true.
I think about the things I had heard about cancer before I
had it. No one ever said that it hurt. You always heard things like 'so and so
passed surrounded by family' or 'so and so was brave and fighting'. How come I
never heard anyone say how much it hurts? Why isn’t that part spoken about?
It’s such a weird thing to realize. What is it? Is it because the picture would
be too difficult to see? What are we protecting by downplaying that very
important fact? Cancer hurts so bad that it tests the very fiber of your being.
It asks how important living is to you that you would endure the worst pain of
your life for more time to live. Have you ever thought that about cancer? Not
very pretty is it.
I found myself at the ER again about a week after this new
chemo. I couldn’t stop vomiting, it had been 4 days of this, and I knew if I
couldn’t stop that I would get dehydrated. I was alone at my condo in town at
night. So I picked myself up and took myself to the ER. It was all I could do
to get myself there. The stress of going was playing out as a full blown panic
attack. As I signed in through my tears, I tried desperately to find some
control of my emotions. The woman at the desk changed my life. She handed me
tissues and said gently, “It’s going to be ok. Stop crying. You’re beautiful. You’re
going to get the help you need now. “ They were the kindest words I’d ever
heard. After doing a chest x-ray and an EKG, they got me back into a room fairly quickly. Once the ER doctor got to my room he
asked me what I thought I needed. I told
him fluids and anti nausea meds. He had seen my chart. He said that after being
a cancer patient as long as I had, he thought I would probably know what I needed.
He gave me what I asked for and discharged me. It was the easiest ER visit I’d
ever had. I was so relieved. As I left I realized that this would not be the
last ER visit or hospital stay. It was a sobering thought. But now that I’d
come to terms with the fact that ER visits and hospital stays would be a way of
life for me, it wasn’t so scary. Now it had become a tool to manage my curse.
The hardest part of all of this is not the incredible
physical pain or the intense nausea. Or the loss of independence, my career, my
life as I know it. It’s not the sleepless nights, the energy I used to have, or
watching my body transform into something unknown. It's watching what it's
doing to my family. Seeing my mother desperately trying to feed me. Because to
her food is the great healer and cooking and gardening is what she does best.
Watching my father trying to fix the unfixable. Seeing him organize my bills
and talking almost daily to the hospitals and trying to make sure I travel so I
can escape my brutal truth. Knowing my brother is trying to be there for me
from so far away when there isn't anything more that he can do. My entire
family is being torn into emotional shreds over something we have no power to
change. We love each other so much and as much as it is our strength, that love
is pain. A family's love cannot kill cancer, but neither could cancer ever kill
a family's love.
I want my life back. I don't want to do this anymore. But I
don't have a choice about that. All I have is what lies before me. And what I
do have a choice about is this: I can feel sorry for myself, or I can rise. And
there is no shame in the times that I fail to rise. Because when I fail, I
still learn. And it hurts. Deeply. But I learn. These lessons teach me about
what really matters. And what I’m really made of. And somehow I rise anyway. Then
it tells me all sides. The ugly, the beautiful, the difficult, the reality. I
get to see it all. And in the strangest
way I’m ok with my path. Because I do find a way to make lemonade. I find the
sweet to complement the sour. And in the end, if you don't make lemonade, all
you've got left is lemons. And who only wants lemons?
"You either get bitter or you get better. It's that simple.You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you." ~Josh Shipp
"You either get bitter or you get better. It's that simple.You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you." ~Josh Shipp
Want to find out how you can help me fight this battle?
