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Excerpt from Today Cancer Tomorrow The World: an advocate is born

July 13, 2012

Here’s another part of the book I’m working on, where I change into someone beyond me…

The pinching of the IV in my arm brings me back, I’m depressed by the IV in my arm. It pinched and twitched like a spider made of splinters. I look at that IV. When I was a kid we’d go to see uncles in the hospital who were dying of cancer, and they had these IVs in their arms. My Dad had one. My Mom had one. No I had one. I hated it.

That night I laid in the hospital bed, trying to sleep. But as tubes filtered out my kidneys and pain pills pulled up my moorings, thoughts and images just flashed and disappeared before I can register them, like the way sunlight briefly flickers and gleams off fish in the water before they disappears in the depths. Parts of me are rising up. It’s reverse sedimentation. And emotions or feelings from the past and views that I currently hold, float or sink. I feel like my brain is being pressed in the blood of my heart so my thoughts have feel. I sort through various emotions and the ones that continue and acknowledge a life that moves forward are light and float, and the ones that deal with unfinished arguments, anger, disappointments, rejections and hurts, become gray and heavy and sink, and disappear—it takes an effort, a pointless one to salvage them for they contain no riches, just bitter passengers who decided to go down with the ship.

When I awoke in the morning, the catheters in my kidneys felt like I had toothaches in my back. I got up and looked at myself. I groaned at the sight of tubes coming out of my body and bags filled with urine strapped to my legs. I was connected to something outside of myself. I was no longer in control of my body.  I look like one of three things: a science project, a Peruvian man trying to smuggle cocaine on an airline flight, or a middle-aged guy with a plan to sneak in margaritas under his drawstring pants for a Jimmy Buffet show. I slowly crawled into bed, trying to avoid getting tangled in the tubes, and terrified I get snagged and accidentally pull them out.

Soon I was staring at a greasy and inedible breakfast of eggs and some type of sausage. I always wonder why hospitals always give you such bad food. I requested cereal, yogurt, and fruit.

“How are we doing?” asked the nurse entering the room.

It was many of the “we” questions I guess they’re trained to ask, because it avoids the rude directness of “How are you today?” which might only elicit a snappish response, “I have cancer, and I have urine bags on my legs, yourself?” It would be hard to work a “we have cancer” in there.

“When can we take this IV out?” I said holding up my arm.

“The doctor has to write an order.”

“I hate this thing,” I said, holding up my arm. “You know in chemo I saw people with these in their arms and to have one of these in me for eight hours. I can handle the idea of chemo but I don’t think I could stand having one of these things in my arm for eight hours, five days in a row.”

“Have you ever thought of a medical port?”

“A what?”

Medical port definition: A port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”. A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein.

“Your oncologist didn’t tell you about it?” continued the nurse.

“No, she didn’t offer it.”

“Well, it’s an option if you don’t like needles.”

I became angry because I didn’t know about a medical port. For the past month I was sucked into the biological-warfare whirlpool of Comprehensive Metabolic Panels, Lactic Acid Dehydrogenase (LDH), Complete Blood Counts (CBC), ALPHA FETOPROTEIN, SERUMs, a swarm needles, IV drips, scans and probes. I came out of it reeling and dazed. I had indoctrinated so many heavy hits I had been shocked, stunned, and stripped of my identity and reduced to the blood levels of sodium, potassium, calcium, chloride, carbon dioxide, glucose, blood urea nitrogen, creatinine, protein, albumin, bilirubin, and liver enzymes. I was washed up on the shores of another world with no survival skills. And the hits kept right on coming from my new reality. I have cancer. Zap! I might have permanent kidney damage. Zap! I have to go through chemo. Zap! I knew what I was but not who I was anymore. My stirred anger of not being told about my medical port option by my oncologist hit me with a truth and snapped me from my free fall. I left “the me” out of the process. I thought, hey, I’m still in charge of this. I learned a “necessary medical procedure” is a euphemism for any treatment that inflicts and enormous amount of discomfort on a patient. I couldn’t cure myself, but I could minimize my pain. Instead of questioning my treatment, I fell into the trap of becoming submissive and ordered off the menu of their medical expertise, which never considered my pain as an issue. This obedience was my fault. I forgot about me. Hey, I’m the one with who has to have the IV-needle in my arm. I’m the one who has catheters in my kidneys and urine bags strapped to my legs. I’m the one who has to go through chemo. But you know what? I’M STILL HERE! And you know why I’m still here in your face. You hear me? I’m still alive. I’M STILL ALIVE! I vowed that the hardship of undergoing another medical procedure would never make me forget my life. And my life is the only weapon I can bring into the hospital to take on this disease.

The nurse looked around, then lowered her voice and said, “I had cancer. I didn’t feel right and went to my doctor. Not a doctor here, my GP. He said nothing was wrong. I started to look and feel worse and my friend told me to go to another doctor, and he found the cancer. That’s why I’m here.” She paused. “Always get a second opinion.”

“Thanks,” I said. “You know when my Dad was dying, one of the nurses told me, “The one thing patients forget or don’t know is that the doctor works for them. He has to do what you want him to do. And they hate that.’”

“That’s true,” she said. “Truer than you think.”

If I was going to fight cancer, I’d have to have my arms free.

I got a port.

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