CT PET Scan

I spent two hours at Stanford Radiology undergoing a CT PET Scan. This is a test to see if the cancer has left the esophagus and entered lymph nodes or other organs. The results will be sent to my surgeon.

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I was in a week long photography workshop last year when a guy confessed that he was very nervous about showing his work to his classmates. To put him at ease, I said, "The great thing about these workshops is that no matter how bad you are at photography, you will always find someone in the class who is worse." He said later that it was true. Out of 25 photographers, there are always at least 4 whose work is so bad that everyone else in the class avoids embarrassment.

In a way, the same dynamic took place when I walked into the Cancer Center. No matter how sorry you feel for yourself, there is always someone, in fact many people, who are in much worse shape. The scene gives you perspective you didn't have before you walk in the door.

By the way, why would you call something a 'cancer center'. It sounds like a place you go to meet cancer instead of cure it! How about "The Wellness Center" or something that allows for a vision of better outcome?

The veterans were prepared. They had thermal underclothes and many layers. The room is cold and I was in there a long time. After receiving an injection of sugar laced radio isotope, I was put in a comfortable chair to wait an hour while the liquid moved around my body. Then, I went into a cat scan machine for 45 minutes. The idea is that the injection would be ingested by cancer cells faster than normal cells. In the scan, the nuclear material lights up. This exposes the cancer clusters. I learned something critical. Cancer cells are voracious. They absorb what you eat faster than other cells and therefore grow fast and choke off the organs that they reside in. I imagine that's why chemotherapy works. You lace sugar with poison and the cancer eats the poison faster than your other cells. The cancer cells die. The healthy cells get sick, but they recover. What make a cancer cell dangerous - it's voracious appetite- is also the vulnerability for killing it.

Children and Grandchildren to the Rescue!

No health news.

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Managing our fear is the major challenge. Working out helps. I have worked out every day for two hours. Ritual helps. We have been busy getting our two homes ready for a visit. Our daughter, Jordan, her husband Matt and the two grandchildren, Baxter and Lyle, arrived today. We met them at the San Jose Airport with two cars and drove to Pacific Grove. Jordan and I drove together. I broke the news to her. She was great. I realize that I need to tell as many people as possible as quickly as possible because there is relief in getting past these painful moments. I'll know better what to say after the CT PET scan tomorrow. Jordan will go with me.

We will have hours to talk. I had said to Sharon, months ago, that I needed to spend more time with Jordan and Josh. We are so busy giving all of our time and attention to other people and don't give enough time and attention to our relationship. We will get that time.

Lyle is two years old. He knows how to get attention and he knows how to exert his will. Baxter is six. He is suffering from a stomach virus. We jump into presents, activities, meals, sleeping arrangements and visiting with great enthusiasm. We are consumed by family. We have no time to be anxious. Our fear and sadness is under control and it feels good.

A Nation of Grief Counsellors

I tell my mother, father and brother the news.

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Informing people, particularly family, is right up there with the worst parts of this situation. It's Christmas eve. I needed to tell my mother yesterday. We are going to see her today. She knew that I had a colonoscopy and endoscopy a week ago and she hadn't heard the results. She would have asked right away. Sharon and I would not able to hide our heightened emotional state. My mother would have read it right away. We can cover this news for awhile on the phone, but we can't in person. We would like to cover the news until we find out more detail. And, it's Christmas. Out of unavoidable necessity, my mother, father, brother, sister-in-law, brother-in-law, and two close friends became the first to know. Everyone has the same reaction. It's hard to take in. Then, it's devastating. Then, the response is brave and smart. "We know that you will be fine and you will come through this in great shape. Thank god you caught this early. I can picture you back at work in record time". I find their responses very helpful. It's as if our whole nation has dealt with so much cancer that we have been trained in how to respond. The response is authentic and sure footed. We are a nation of unofficial grief counsellors. We decide hold off telling other people until just before we see them. Everyone should enjoy the holidays without this news and we need more details.

Taking Charge

I will have a CT PET scan on Dec 28. I will meet with the surgeon on January 4. The biopsy from my endoscopy was positively identified as cancer. We are not surprised and it was clear that I would have had the same surgery just to remove the growth, cancer or not. Now, however, I have to hope that we have caught it early enough to prevent it from spreading anywhere else in my body. The CT PET scan will tell us if it has spread.

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There is a lot of organization dysfunction in the medical community. I've seen hints of it in routine exams and testing, but, now, I am seeing it up close. After two days of efforts, my physician's nurse could not get a CT PET scan scheduled. After working the phones for a few hours and getting nowhere, I finally appeared in person in my physician's office and hand carried the work order to Stanford Radiology only a quarter mile away.

I appeared at the nurses station in the area where CT PET scans are done and insisted on meeting the people who are doing the scheduling. They were wearing Santa's elves hats and clearly doing as little as possible. They suddenly looked guilty. I noticed that a guilty face in a elf hat is funny. There was a two inch stack of faxes waiting to be read on the fax machine (undoubtedly including four copies of the same work order I have in my hand).

They quickly scheduled my CT PET scan on December 28. This is a nuclear medicine test to see if the cancer I have in my esophagus has spread to the rest of my body. Every day that I don't know the answer to that question is a major problem for me.

I wonder how long it would have taken to get that test if I didn't appear today at Stanford. My experience isn't unusual. Each of the doctors that are working with me roll their eyes when I explain the scheduling problem. "Oh, yeah", they say, "they are famous for not following through, and I have had no more success than patients when I try to expedite the process. You really need to insist on getting the results and hand carrying them to the next location". Stanford ranks right up there with the best of medical centers. Wow!

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Heads up to physicians: Don't accept the dysfunction that currently exists in handing off work orders and test results from offices to clinics and back. Your customers are dealing with high intensity expectations and nothing short of seamless and timely communications is acceptable. The current situation does not inspire confidence in the medical community. The erosion of confidence in any part of the medical system doesn't help your customer's ability to stay confident and heal.

Living in a Nightmare

Nothing changed. No tests, no discussions with doctors. I assume my internist staff is setting up a CT PET scan as soon as possible as promised.

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I slept well until 4:15 am. Then, I woke up with fresh energy and my imagination hijacked my brain and took me for a ride. I lived into every miserable scenario possible. I fell asleep again, exhausted, at 6:00 and woke up at 6:45 thinking I had a nightmare. I've been there thousands of times as the nightmare vanishes in about 30 seconds and the real world appears with all its previously unnoticed glory.

It took 90 seconds for the nightmare to hold in place and I realize that I am living in a nightmare.

I sleepwalk through two hours of exercise, work conference calls and a haircut. At the end of the day I realize that no one has called me to schedule a test which is critical to determining if I have reasonable prognosis to live or not.

My consulting and facilitating experience kick in. I am going to have to sponsor my own recovery. I am the one with the issue. The urgency is mine. To the medical profession, I am now a case which falls into a triage of priorities. I start making calls and crack all the barriers of automated answering services, live answering services, on-call physicians, and a priority system that put the Christmas parties, shopping, and card sending before the never ending line of customer (patient) needs. I fail. I face another sleepless night.

Life Imitates Art

I was diagnosed with esophagus cancer today following an Endoscopy. It appears to be an early stage. I need to arrange a CT PET scan and meet with a surgeon as soon as possible. In the meantime we will hear the results of a biopsy, but Dr. Shields says that the 3 cm growth at the base of my esophagus is very likely to be cancer and will require surgery even if it isn't. I had the Endoscopy because I was scheduled to have one every three years. Three years ago, I had my first one after complaint of a minor (really minor) discomfort in my stomach following sit-up routines. They found that my esophagus was irritated. The condition is called Barrett's. It increases the chances of cancer in men significantly but it's still rare. Even though it is rare, it requires a close watch with an Endoscopy every three years or less. It had only been two and a half years since my last one.

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There is no good way to hear bad news, but it helps to be in a Demoral haze. It was an 'out of body' experience. I came out of my anesthetic as the doctor walked in. Sharon was in the room. I flashed back to the day before.

On December 19, I was working with a client group of 30 people who were going through a major organization change. I reviewed the grief processing model with them because they were experiencing a significant loss. To bring the model home, I played two minutes of a Simpson's episode called "One Fish, Two Fish, Blow Fish" in which Homer hears from a doctor that he has 24 hours to live because Homer believes he accidentally ate a blow fish. It's a funny piece and it demonstrates what happens when a person hears bad news. In fact, I had conducted many of these meetings in October and November and talked about this model with over 600 people.

I smirked because I was sitting in my 'johnny' right where Homer had sat in his underwear. Sharon was sitting where Marge was. The doctor walked in just as the doctor walked into my recovery room. With a look I could only describe as 'heavenly concern', he says that he has bad news just as Homer's doctor did. It appears I have cancer of the esophagus. He's pretty sure. He says it's good that we caught it early. We need to know if it has spread and we need to talk to a surgeon, Dr. Richard Whyte, as soon as possible. And he leaves. The door opens again and my internist is saying something about how we are going to beat this thing. The words have the familiar ring of endless cancer patient dramas that we've all seen, too many times, on stage and screen. She, also, looks very concerned. Then, she's gone. The nurse takes a needle out of my arm and says we can go.

In the Simpson episode, Homer runs through the whole grief cycle in less than a minute and says, "Oh well, we all have to go sometime!" I can't even take it in. Sharon does take it in. She is not on Demoral. She is the designated driver. She and I hug hard. I'm in a daze.

As the day wears on, I go on the web and learn that this is life threatening cancer. Surgery is the only answer along with radiation and chemotherapy. Realty sets in. The Demoral wears off. Real grief processing begins and it's not as funny as it was on the Simpsons. We are overwhelmed with emotional waves of fear and sadness.

There is no good time to hear news like this, but Christmas holidays don't lend themselves to telling family and friends.

There is no way to prepare yourself for the word, Cancer, but I have no symptoms. I am totally unprepared. This was a routine exam. Physically, I feel great. I would never have known that I have a problem until it was way too late. I am lucky, but I feel unlucky.

I am constantly choked up with emotion. How am I going to talk with anyone? How will I go back to work? How will I talk to 30 people a day about the grief processing model? How can I show Homer Simpson blinking at the news in his underwear.

Heads up for physicians: Don't announce bad news while your customer is in a "Johnny" with his bare butt on an examining table and needle sticking out of his arm. Wait until the customer is dressed and bring him into an office and take more time. At a moment like that, dignity may be the only emotional anchor that can be preserved.