Thursday, May 31, 2007

Did you boys pre-medicate?

Did You Boys Pre-Medicate?

When I got my oxyplatin chemo treatments, I was in no shape to drive myself home from the doctor's office. So I always asked one friend or another to drive me to and from my chemo treatments and to distract me in between.

For one chemo treatment, I invited my friend Rick to be my driver AND photographer Rick had years of experience shooting movies in Hollywood. Also, he had had stomach surgery himself, so he was very helpful helping me learn how to eat with a new digestive track. I wanted Rick to take digital photos of one of my chemo treatments. In the back of my mind I knew someday I would publish a book on my experience with colon cancer.

In the treatment room, I sat down in the patient chair and Rick positioned himself in the corner near the door. After a few minutes, a nurse entered the room and introduced herself. Uh oh, it looked like I was going to have to break in a new nurse. My oncologist was expanding his practice.

"Who is this?" the nurse asked me, as she started prepping me for my meds.

"My friend Rick," I responded. "He is here to drive me home after my treatment."

"OK," she said, sounding a little suspicious.

My nurse did not notice Rick's camera.

The needle stick for my IV was always a difficult part of my chemo treatment. I had hoped Rick would engage me in conversation as the nurse found a vein. But no, Rick was getting his camera ready for the digital shoot.

First the nurse started with the Saline solution. Next, she injected oxyplatin. It would take
exactly one hour for me to feel the full effects. I knew this from experience. Onyplatin is a booster drug or catalyst drug. This drug is like a solid fuel booster rocket to blast me into outer space. I was sitting in a chair ready for takeoff. “Ground control to Major Tom.”

The nurse left the room to attend to other patients and Rick went Hollywood.

Click, Click, Click.

I felt the freezing Oxyplatin crawl up my arm through my vein. It was like my entire arm was immersed in a bucket of ice. Rick kept shooting. He shot high. He shot low. I put a water bottle on my lap for product placement. Click, Click. We both found this hilarious. My facial expression shows much of my life force has been slammed into a chemo fog. Rick and I were laughing and shooting pictures. I got slammed full force by the oxyplatin. The new nurse burst into the room.

"What is going on in here? I heard laughing!" She barked a few questions. Then, a very stern look on her face, she asked both of us, "Did you boys pre-medicate?"

Even under the full force of Oxyplatin chemo fog I was able to reply

"No we didn't PRE-MEDICATE.

This oxyplatin has knocked me out for the next 4 hours and Rick here is my designated driver. After this treatment Rick will drive us both to a bar in where we will fully enjoy the rest of the afternoon. Rick will drink a pitcher of beer to catch up with me and I will slowly recover from Oxyplatin.

Rick will POST-MEDICATE.

After four hours of drinking for Rick and me processing the Oxyplatin, we flip a coin to see who will drive home."

The shocked nurse left the room quietly and made some notes in my medical record.

Thursday, May 17, 2007

Just Call on Your Brother

I took my morning dose of chemo and then proceeded to my brother’s church in Santa Cruz. I experienced a spiritual high from the chemo and the church experience. I excused myself and stepped outside to face the sun in a garden. My brother joined me a few minutes later then inquired, “Doug, are you ok?”

“I am fine David.” Just wanted to sit in the sun this feels sooooooooo good.
My chemo is wearing off and I am coming back to planet earth."

David then sat next to me, put his head on my shoulder and began to quietly sob.

“I am so glad you did not die” he whispered in my ear.

We both were facing this disease for months of treatments. This was the first time my brother David expressed his fear about my near death experience of cancer.

I replied, “David, I can’t feel sadness right now. All I can do is to be strong and fight this cancer each day. Once I am done with the battle and I win and I am cancer free THEN I can feel the other emotions.”

It takes real courage for me feel all the emotions. I stuffed the sadness and anger and dispair into a box so I could fight the battle. Feelings continue to flow and I experience them and then release them. It seems a bit easier as time passes. Healing is a slow process.

Today my brother David and I are very close. I very blessed to have him in my life.

The song "Lean on Me" says it all.

Some times in our lives,
we all have pain, we all have sorrow.
But, if we are wise, we know that there's always tomorrow.

[Chorus:]
Lean on me, when your not strong, and I'll be your friend,
I'll help you carry on. For it won't be long, 'till I'm gonna need
somebody to lean on.

Please, swallow your pride, if I have
made, you need to borrow. For no one can feel those of your
needs, that you won't let show.

You just call on your brother when you need a hand, we all
need somebody to lean on. I just might have a problem that
you'll understand, we all need some body to lean on.

[Chorus]

You just call on your brother, when you need a hand, we all
need somebody to lean on. I just might have a problem that
you'll understand. We all need someone to lean on

If, there is a load, that you have to bear, that you can't carry,
I'm right up the road, I'll share your load, if you just call me.

Call me

Monday, May 14, 2007

My Diagnosis

My First Colonoscopy
October 2003

I delayed one year before going to get my colonoscopy. It hurts my wife told me. I finally scheduled my procedure. My primary care doctor Mark Greenbaum had inspected every portal of my body. He said it is time for the scope. Routine colonoscopy. “After fifty, it is time to get this done.” He advised.

My Doctor had guided me through treatment for depression, nasal pollips, hernia operations, blood pressure treatment and so on. He always answered my numerous questions.

I glanced at the neatly stacked magazines in the doctor’s waiting room. The frosted glass sliding door hid the receptionist from view. Time to sign the clipboard with my patient name and arrival time.

A tall well dressed woman entered with her husband. He slowly signed the clipboard and the woman sat down next to me. I started to chit chat with her to pass the time but she stared at her husband who was methodically completing paperwork. She held the car keys in her hand and whispered in my ear.

“I want to make sure he does not bolt out the waiting room door. My husband will find any excuse to run away from his colonoscopy.”

She joined her husband at the frosted window hiding the receptionist and helped her husband get signed in for his procedure. She had a canvas bag in her hand stuffed with magazines to read and probably healthy snacks.

Later I learned that only about 50 precent of the patients show up and complete their colonoscopy. Leaving 50 percent skipping this procedure.

"Mr. Beckstein?" The nurse dressed in a generic medical outfit looked at me over her reading glasses.

I follow the nurse for the normal weight in and blood pressure check. Then off to a tiny room to watch and educational video about Colonoscopy on a tiny TV.

“Any questions about the procedure?” the doctor asked.

“Will it hurt?” I inquired.

“No. You will receive a light dose of anti-anxiety medication and then an IV of a medication that will block the feeling in your body. You will be awake during the procedure and be able to watch the whole thing on a TV monitor.” The doctor replied.

“Ok lets do it” I said.

I booked the procedure two weeks before Halloween 2003.

The Prep
Off to the drug store to get the prep meds to clean out my colon for my procedure. Got my supplies, read the doctor’s instructions and positioned my body at my kitchen sink in my home. I looked out the window at my beautiful garden and watched my dog Sally and cat Sylvester corner a squirrel in the back yard.

The prep for my colonoscopy was this salty tasting solution that I needed to consume completely. I took a sip and threw up in my kitchen sink. Bent over the counter I thought of my dear friend Sally who fought breast cancer for so many years and lost her life to the disease.

I took another swig and puked again. I was empting my stomach not my colon. I finished the salt solution and cleaned the kitchen sink. Sally and Sylvester were still chasing that squirrel.

Next phase of my prep was an enema. Never remembering having an enema before. I read the directions then positioned my body on the kitchen floor this time raising my knees to my chest in fetal position and inserting the applicator into my rectum slowly. Now I get to empty my bowels into the toilet. I think I dropped ten pounds of weight that morning with the puking and toilet adventure. Time to go for my colonoscopy.

The Colonoscopy Procedure
The doctor was wearing a mask so were the nurses. I think they were getting ready for Halloween. Probably the Valium making me feel more relaxed. Lets see I lay on my side with bent knees. There is the TV so I can watch the procedure. Oh goody.

The doctor says “Good Morning, how are you.”

“Fine.” I reply. He is probably not too interested in my puking in the kitchen sink story I thought. Lets just get this thing DONE I thought.

The doctor hooks up and IV with my final meds. “You may nod off to sleep” he said. Fine I thought. I really don’t want to watch your TV anyhow. I hate TV.

Then I woke up with a jolt. My doctor was staring at me. The nurses were staring at me.

“Mr. Beckstein you have colon cancer. You must schedule an abdominal resection surgery as soon as possible.” The doctor advised.

He handed me a small piece of paper with hand written instructions. I rolled over on my back on the gurney in shock. Deer in headlights. Stunned. The nurses had their masks removed and they said, “You will passing a lot of gas from this procedure.”

The doors of the procedure room opened and I felt like I was going through an automatic car wash leaving the procedure room experiencing the biggest fart of my entire life.

I have Colon Cancer! Oh my God.

Panic

I came home from work to be greeted by a blinking light on my answering machine. I pressed the button before the door was closed. I recognized the voice right way. My primary care physician’s office manager.

“This is Doctor _____’s office. The doctor would like you to call him back as soon as possible.”Then she left the phone number.

Damn! What is wrong? I thought. Why is my doctor calling me. I just got those blood tests for lipids. He would not call just for high colesteral. I also had blood work done to prepare for my regular checkup of a CT scan of my throat, abdomen and pelvis which are scheduled for next Monday. Hummmm.

My heart started pounding and I played the message again trying to write down the office number. Found my phone and dialed the number. Wrong number. I played the message again. Dialed again. Wrong number.

Why can’t people speak louder and slower when they leave phone numbers? Now I am irritated and scared at the same time, impatient to get the news yet dreading the message I was going to receive.

I dialed the phone a third time. Busy! My anxiety is rising even more. My fourth attempt to reach my doctor was successful. The office staff put me through immediately.

The doctor reported that my CEA test result was 3.6 and normal is 3.0. He was concerned about this cea reading and said he consulted with my oncologist. They both agreed that the CEA test must be redone in six weeks. I replied that my CT tests would be next week on Monday and that I have scheduled an oncologist followup office visit a few days after my CT scan so the results can go to my oncologist. We will review the CEA blood tests and CT test result in about ten days.

“Good he said. We are not exactly sure what this test result means right now. Your oncologist will discuss this with you.”

I hung up the phone. My head spinning. What is a CEA test again? My dog is telling me she REALLY has to go outside. I grab my cellphone and dog leash and leave the building. As Sally is sniffing and peeing on green grass and pooping in high weeds, I dial my friend Lior. Her number is set for speed dial since I usually drive her to my writing group. “Please, please, answer” I pray then a deep voice says “Hello?”

“Hi this is Doug, I am a friend of your mom, is this the right number?

“Yeah, it is. I’m her son.”
He could sing bass I thought. Then I asked, “How was Alaska?”

My friend had told me how proud she was that he was doing a fundraising event skiing in a competition in Alaska.”

“It was really cold there but I finished the course on hour earlier than last year.”

“Fantastic. You can be proud of that accomplishment! Can I speak to your mom?”

“Sure. She just walked in the door from work.”

I was so relieved she was home and that we could talk. Sally my dog was greatly relieved too. Sally was marking territory in my neighborhood as I talked to my friend.

“How are you?” she inquired.

“I’m a little worried. I got CEA test results of 3.6 and normal is 3.0 Now I am afraid my cancer is coming back again.”

She paused to try to understand my speed rapping. Sally is pulling me down the sidewalk with much enthusiaum. I am shouting into the cellphone then I lose my connection.

Redial. Busy.

Slow down Doug I thought. Collect your thoughts and stop walking Sally as you redial. My friend answers the phone.

“Hey slow down. What is a CEA test?” she querried.

“I don’t remember exactly. I think it is a cancer marker. I had them all through my treatment and each time I asked my oncologist or radiologist they said my results were in a acceptable range.” There. I got a chance to tell my story to a friend who too is fighting cancer. She understands the anxiety test results bring to cancer survivors.

I ask how she is doing and I get the latest news. We decide I will pick her up for writing group this week. I thanked her for the support. I promised I would be writing about this.

Worry Cycle Drama
I have been down this path before. Time for some self care. First of all I want a beer. No beer in my studio. I want wine. Nope. I decide not to go to the liquior store. Sally and I return to my studio.

My friend Robin calls. I tell her my news that I am worried about cancer reoccurance and the CEA test results.

“I’m sorry Doug, What is a CEA test?” she asked.
“I don’t know Robin.” We caught up on the latest news and I said goodnight.

What do I do now I wondered?

Lay down and play a relaxation tape. NO. Time to pamper myself.

Took a long hot shower. Got in my robe and jammies and those fuzzy slippers I got from Pat.

Lit a scented candle I got from Lorraine.

Made a salad with hot peppermint and green tea. Watched a comedy. It’s a mad, mad, mad, mad world. Now I need rest.

A good night’s sleep in my comfy bed under a fluffy down comforter. Tomorrow I will google “CEA lab tests” and learn more about what to do and what to ask the doctors.

I get a good night sleep.

Sunday, May 13, 2007

Talk to Chuck

Jack can get anybody to exercise. In 2004 My chemo and radiation treatments were finished. Cancer cells were killed throughout my body but I was white as a ghost. Itg was time to rebuild my physical body. I have been going to a gym for 20 years. Every workout was the same routine. Never did I exercise to the point of sweating. My workouts were a rut. Time to reconsider my exercise goals.

People at the YMCA said, “Hey, you should try Jack’s class.” Well being a skeptic I thought, how about hiring Jack as a personal trainer? Fine. I asked Jack. “Will you help me get back in shape? I just finished treatments for colon cancer.”

Jack paused of a moment then said, “OK, but talk to Chuck first.”

“Who’s Chuck?” I countered. “Why do I talk to Chuck, when you are the best personal trainer here at the Y”

“Because” Jack quickly replied, “Chuck finished cancer treatments a year ago and he is better suited to help you with your physical recovery program. You talk to Chuck then I will work with you.”

Exceptional Patients

What is an Exceptional Patient?
From Love, Medicine and Miracles by Bernie S. Siegel MD. 1986

Exceptional patients are confident they will beat back the disease and resume a normal life. They hold an optimistic view of their prognosis.

Exceptional patients heal themselves. “They do not rely on doctors to take the initiative but rather use them as members of a team, demanding the utmost in technique, resourcefulness, concern, and open-mindedness. If they are not satisfied, they change doctors.”

Exceptional patients involve themselves in creative activities.

Exceptional patients believe in the power of the mind to overcome disease.

Exceptional patients take charge of their lives and refuse to participate in defeat. They refuse to play victim.

Exceptional patients work hard to achieve health. “ True healing not merely reversal of one particular disease.”

Exceptional patients love themselves and others. They love life and accept the fact they will not live forever.

Exceptional patients work hard to achieve peace of mind. Peace of mind sends the body a “live” message.

Exceptional patients help themselves and others mobilize all resources to fight their disease and heal themselves.

Exceptional patients educate themselves and become experts at their own care.

Exceptional patients demand dignity, personhood and control no matter what course of the disease.

Exceptional patients want to know every detail of their health care: x-ray reports, lab test results, pathology reports and what every number means.