My 5 Year Cancerversary

5 years ago today a doctor walked into my exam room and said, “you have cancer.” This blog entry is about that experience. It covers April 28th and 29th of 2005. Before jumping into that event, I looked up the 5 year survival rate. One website (see reference at bottom of post) put the rate for those diagnosed with late stage head & neck cancer at 27%. It feels pretty good to not be in with the 73% of the people who are no longer with us. Although the cost physically, mentally, and financially to me and my family and friends has been high, I take some solace in beating the odds.

A few blog entries ago I had written that I was writing a book on my cancer journey. I have since abandoned that idea as I did not find it a compelling enough story. I did however crank out 100 pages of pretty solid text before coming to this conclusion. My goal was to write a story that gave the reader a true non fairy tale feel for what it is like to walk in the shoes of someone with cancer. The following are 4 pages from my writings that you may find insightful. It begins with my first exposure to the head & neck cancer clinic at M. D. Anderson.

April 28 2005
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The patients in the head and neck cancer unit waiting area were generally older than me, but not all of them. One big difference between here and the Sarcoma unit was the evidence of massive facial deformities. An older woman whom I guessed to be in her mid 70s had a piece of gauze straight across the front of her face between her eyes and her lips where her nose should have been. When she turned sideways and the sun from the window backlit her head I could see a straight plain where her nose used to be. This disturbed me. There were people with blue and red markings on their face with indelible marker. There were multiple patients with tracheotomies. I had never seen so much misery in one place. These were images out of a horror movie.

My wife and I stood until two chairs were vacated. After a few hours my name was called. We both got up and went into the clinic. They took my vital signs: weight, blood pressure, and temperature. We were told to go back into the waiting area until an exam room opened up. Every time we asked how long we would be waiting, we were told “you will be seen shortly.” We waited another hour before being brought back to an exam room. Here again we were asked to wait. “How long?,” I asked. We were told the doctor would see us shortly.

A physician’s assistant joins us in the exam room. She examines me and takes down notes on my background. Yes, I smoked during high school. No, I haven’t smoked in over 30 years. Occasionally, I have a glass of wine, nothing else. She finishes with her note taking, says the doctor will be in shortly and leaves. After more waiting my doctor enters the room. He asks similar questions as those asked by his physician assistant. It is late in the day. We had originally come to the Cancer Center for a scheduled early morning Sarcoma exam and now here it was pushing 5:00 P.M. He examines my neck visually and by feel. He maneuvers an endoscope down through my left nostril which gives him a clear view of my pharynx, upper esophagus, upper windpipe, and vocal cords. He asks me to say “eeeeeee” a few times. He removes the endoscope without difficulty. He tells me to open wide and reaches in as far as his gloved right hand can reach and feels the back of my throat and the base of my tongue with his finger. I gag. It is unpleasant. I ask him what he is seeing and feeling. He provides me with no verbal assessment on one hand or assurances on the other. He says he would like to schedule me for a Fine Needle Aspiration (FNA) and to do it as soon as possible, would tomorrow work for me? We learn that he is from Pittsburgh. My wife is from Pittsburgh and I lived and went to undergraduate and graduate school there. This gives us an instant mini-bond. We’re all Steelers fans. Go Steelers. He has me scheduled for a FNA the following afternoon.

We leave there. My wife is under the impression that I have cancer. I am still under the belief that whatever is wrong with me may be cancer, but it could be something less serious. After all, it is just a few swollen lymph nodes. We meet a friend and her spouse for drinks at a restaurant near our home and neither my wife nor I mention how we spent the day.

April 29 2005
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I drive down to the Cancer Center the next day, park, and walk the quarter mile to the Fine Needle Aspiration facility. There is a small waiting room and no other patients are there. I check in with the clinic receptionist and my name is called quickly. I’m led to an ordinary looking exam room. There are a few chairs, an exam table with the white paper pullover to help keep it clean between patients, cabinets underneath and above the counter top. There are a few medical exam devices in the room, but nothing out of the ordinary. A female Asian doctor comes in and introduces herself. She feels and gently palpates my neck and lymph nodes. She tells me that she is going to take sample fluid from multiple spots in each swollen lymph node and examine them. She retrieves a huge hypodermic syringe. The needle is about 4 inches long and the syringe can hold 20 milliliters of fluid. I ask if it will hurt. She says a little, but not too bad. I sit in one chair; she sits in the chair next to me. She pokes the needle slowly into my swollen lymph node. She draws some fluid. She repeats this 3 or 4 times. The syringe is almost full. She excuses herself from the exam room. She returns a few minutes later with a new syringe and wants a few more samples. I am of course thrilled because her fluid extraction shrank the size of my lymph nodes by 50%. I asked her to take all the fluid or as much fluid as possible. She repeats her exercise: stab, pull plunger, remove syringe, put syringe in a vertical position with the needle pointing up, push plunger in until all the air is removed, and then repeat. I continued to be thrilled. My swollen lymph nodes were practically gone, my face and neck contour was almost back to normal; it hadn’t been this way for over 2 months. She had succeeded in 10 minutes what a month of antibiotics had been unable to accomplish. She excused herself again.

I liked her. She was nice and the procedure didn’t hurt too badly. She returned two minutes later. She said, “You have cancer.” I was stunned! I had prepared myself for this mentally, but somehow I did not expect it to play out this way. I thought she might come back into the room and say, “we’d like to schedule you for some additional tests” or “my findings were inconclusive.” That’s not what happened. What happened is that in the two minutes she was out of the room, she squirted some of the fluid on a microscope slide, slid the slide under a microscope, looked at it, and quickly and unequivocally came to the conclusion which she unabashedly shared with me in three life-altering words, “you have cancer.” I wasn’t prepared for this. Sure, I liked how my lymph nodes were no longer swollen, but I HAD CANCER. I did not know what to ask, or where to begin. So, I asked if my lymph nodes were now better. How dumb is that? She said they would continue to swell as they fought the cancer. I asked her what type of cancer I had. She was as matter of fact when answering as the women behind the deli counter when you ask about a type of cheese or salami. She said, “You have squamous cell carcinoma.” In asking what I should do next, she said she would send her findings to my doctor and he would be in touch with me. There were a dozen questions I should or could have asked, but I was in a state of shock. I had watched my mom suffocate from lung cancer less than 4 years earlier. She went from appearing perfectly healthy to being dead in 6 months. My siblings, dad, and I spent the last week of her life with her. It was terrible to watch someone you love go from active tennis player to bed-ridden paraplegic in a matter of months.

What was going to happen to me? I was scared. I had cancer.

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Reference
http://emedicine.medscape.com/article/1289986-overview

All Quiet on the Western Front

The literal translation of that title is "Nothing new in the West" with the West being the war. It was a routine dispatch used by German soldiers during World War I.

On March 31st I had blood drawn and clinic visits with my oncologist and surgeon at my cancer center. They did not see anything suspicious, said I looked well, and will schedule me for a follow up in 3 months. That visit will involve a CT scan of my H&N, maybe my chest, and an x-ray. I have been taking a daily chemo pill, Tarceva, for 28 months. My oncologist thought it best for me to continue with this treatment. This all leads back to the above title, there is nothing new with my own personal war on cancer. I'm still in clinical remission having had no evidence of disease for 30 months.

While at the cancer center, I was able to talk to my speech therapist who scheduled me for a modified barium swallow test later that same day. The results this time were different than the test last August. I'm 100% convinced that my anatomy had not changed. The difference was the skill of the therapist performing this test. The test showed some constriction in my esophagus and felt a consult with a gastrointestinal doctor (and a possible esophageal dilation procedure) may yield some progress in my ability to consume additional types of food. I have been living off of Boost nutrition drinks for over 3 years now. It's good, but not that good. I'm encouraged by this latest development.

I was also able to have a great catch up with a friend that works at the cancer center. So, all-in-all a pretty good day.

Stay well and take care.

Ed