Ready to Radiate!

I completed planning and targeting for radiation treatments today. My first session is scheduled for February 5. I expect to start chemotherapy the same day. I will need to have radiation every weekday for 5.5 weeks. I will spend one of those days, probably every Monday, getting an infusion of chemotherapy as well and then take tablets on the other days. The chemo will involve two drugs. One is Capecitabine which is in tablet form and taken daily. The side effects are not expected to be too bad from this drug. The second is more problematic. It's called Cisplatin. This has a lot of potential side affects in full dose, but I'm getting much less than a full dose. So, we don't know how much side affect I will get. It may not be very difficult, but, then again, it could be...especially as it builds up over the weeks. It may take as much as 6 weeks following radiation and chemo to be fit enough for surgery, so we are planning surgery in early May.

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I laid down of a newly mixed back of chemicals. In a matter of minutes, the bag rose up around my sides and made a mold of my body. Then, with me in the mold, the therapist did some CT scans to locate all my organs. Then, I swallowed a dose of barium. I had heard a lot of bad things about having to swallow barium and didn't look forward to it. Dreaded it, in fact. It wasn't bad at all! That's good, because I think I'm going to have to swallow a lot of it before this treatment is done. The therapist will plan to do radiation from a different direction on my body each day with the beam passing through my tumor. The only place in my body that will continue to get bombarded each day is the tumor. The rest of my body will get some radiation, but not enough to do damage. In order to insure that I will be in the same position for radiation each day, I will position myself in the mold and get lined up on three laser beams which will fall on three spots that were tattooed on my body. Don't get excited! It wasn't a fancy tattoo! Basically, these three tattoos are pencil points. My first session is set for a week from Monday. I'd like to get started sooner, and thought we would, but it take some time for the therapist to determine the plan and program the machines.

More Preparation and good news!

I did another CT scan this morning. This time they gave me a shot of iodine first. I was in and out in 15 minutes. The preliminary look by my radiologist was good news. Once again, there is no sign of this cancer spreading. Tomorrow I will be working with the radiologist to develop the radiation plan. It looks like we won't actually start radiation and chemo until a week from Monday

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The clinic wing at Stanford Medical Center has a life of its own. About half the civilians that pour in and out all day are very ill. Many are bald or covering baldness with a cap that hides the effects of chemo and radiation. Many are doubled over in pain and wearing IV's. Behind glass cubicles are receptionists and record keepers who do the best they can with a health system that is clearly out of control. There are several doctors who are the rock stars of their fields. They are followed by endearing groupies in white coats. When the doctor stops, the groupies stop. When the doctor looks right, they look right. When the doctor puts his pen to his lips in pensive thought, they do the same. Then the groupies take notes on the last 60 seconds. There are three or four of these gaggles of white geese scurrying in all directions.

There is a language with it's own jargon and codes that I'm beginning to pick up. The diagnosis that drives staging begins with the letter "T" which stands for tumor. It's followed by the layer of tissue that has been penetrated. For me that is the second layer. So the "T" is followed by a "2". That was confirmed by an ultrasound endoscopy that was ordered after the normal endoscopy discovered and removed a piece of the tumor of biopsy. After the "T2 comes the letter "N" for nodule. We want to know if the cancer has spread to nearby lymph nodes. In my case, the CT PET scan and a second CT with contrast dye that I did today show no signs of cancer spreading anywhere else. I get a "0". That's the first "0" score on a test that I have ever celebrated. So, the designation T2N0 is not too bad. Then, there is an "M". That stands for "metastasized". This is the famous "M" word meaning that the cancer is spreading around your body to other orders through bone marrow. This may be the most feared word in the English language. I get another "0" and chance to celebrate. When the medical profession refers to my situation as T2N0M0, they know what is happening immediately. The first thing that each person asks, is "How did you happen to find the cancer in that stage?" I tell the story again, and they take notes. They are trying to figure out how to help other people catch this in the early stages. Some protocol is being reinforced by this story.

New Assignment

Next week is devoted to more testing and preparation for five and a half weeks of radiation and chemo. I will probably start treatment on Jan 29. As I understand the routine, I will go to Stanford every Monday for radiation and an infusion of chemo. Then, I will go every weekday for about half an hour of radiation. The chemo is designed to make the radiation work better. The radiation is designed to make the surgery work better. Each specialist is clearly a member of a collaborative team at Stanford Medical Center.

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I had to put my consulting assignment with Lawrence Livermore National Laboratory on hold while I focus on treatment. The work is wonderful, but it requires a lot of energy and a predictable schedule. So, yesterday was my last day at the labs for about the next six months. It was a wonderful day. I meet a lot of fine people at every client, but I've never seen so many fine people in one place before. I'll miss them.

I feel great! I've worked out at the athletic club every chance I've had. Sharon and I have an added spotlight on the fun we always have together. Friends and family are reaching out to me with more expressed love than ever. I've had cards, calls, emails and visits. It's amazing how much each interaction adds to my morale. I'm going into treatment with the best support and attitude that anyone could ever have.

The new strategy settles in

I have an appointment next week to prepare for radiation treatments. I'm waiting to hear about a date to do more sophisticated CT scan that will examine other most of my body for the possibility that the cancer has spread. So far, every other test has been negative and we expect this one to be negative as well. The outcome will determine the level of chemotherapy. At the moment, I may get a relatively light treatment.

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It was difficult to get accustomed to the thought of missing work for six months. I notified clients. They were very supportive.

I will work one more day tomorrow and that will be it. I need to be available next week for tests and preparation for treatment. It's a weird feeling. Two days ago, I was resigned to missing two months of work just to get through surgery. Today, I am looking at six months of treatment. We feel whip lashed with change. I'm supposed to be a change management consultant who knows how to do these things, so I'm not going to admit to anyone that I can't handle it. Damn, this is hard!

Decision Made!

We've dramatically changed direction. I won't go to surgery next week as planned. Instead, I will begin preparation for a combination of radiation and chemotherapy. I will begin treatment in the first week of February and continue for 5-6 weeks. Then, I will need to 6 weeks of recovery before surgery. All together, I will need to be out of work for the next six months.

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I am so impressed with these doctors! The surgeon, the radiologist, and the oncologist are among the most impressive people I have met. They are tops in their respective fields, and their manner is perfectly tuned. The people around them are also great. In the end, the decision wasn't that hard.

I had hoped to avoid radiation and chemo altogether but we couldn't get assurance that skipping that step was safe enough. It was heartening to learn that the doctors who discussed the strategy recommendation have not seen many situations like this. There are very few patients who come in with this early stage esophagus cancer. The diagnosis is T2M0. They were very curious how someone who had no symptoms managed to get an endoscopy that was almost perfectly timed.

After a very long discussion in what they called a 'tumor board' there was no consensus. The tumor board consists of specialists and dedicates time to collaborate on cancer patients. The board consists of a surgeon, an oncologist, a radiation oncologist and an anesthesiologist. They try to jointly come up with a recommendation. It's possible that surgery, by itself, could eliminate the cancer. It's also possible that a combination of radiation and chemo could eliminate the cancer. On the other hand, it would be safer to do all three treatments, but each treatment has it's own risk and discomfort. If I were older or in poor condition, they would have tried one thing or another and taken the risk of the cancer coming back. In my case, it is possible to do all the treatments because I am in good health and relatively young. So, we decided to be as thorough as possible. We agreed to do some additional testing and planning next week. We will begin the week after. I will have to go in for radiation five days a week at the Stanford Medical Center. I will have to spend about 5 hours doing chemotherapy every Monday. The remainder of the chemotherapy will be by tablet. So, we will plan to stay in San Carlos Monday through Friday and go to Pacific Grove on weekends as long as I feel good enough.

After the radiation and chemotherapy, I will need about six weeks to build my system back up and get ready for surgery. Surgery should take place in early May. I'll probably be recuperated enough to work in July. We feel good about the strategy. I feel that I got diverse, thorough and first class advise. I also feel that I was in control of the decision.

From the Mouths of Babes

And what do Bob's grandchildren have to say about all this? Below is a snippet from tonight's dinner conversation with Baxter (age 6) and Lyle (age 2) following some discussion about next week's surgery and my trip to California to be there for it. Here is what the younger set out in Chicago have to say:

Lyle: Papa go to the doctor. Mommy go, too. Lyle miss you, Lyle be sad. Lyle say "boo hoo".

Jordan: I'll miss you too, Sweetie, but then I'll come back soon.

Lyle (brightly): Papa go in ambulance to see doctor!

Baxter (with complete scorn, suddenly knowing it all because he just learned that people can actually get stitches inside their bodies): No, Lyle! Of course he won't go in an ambulance.

Lyle: Oh. (Trying again) Papa walking to the doctor!

Jordan: No, Papa will go in the car with Nana. And I'll be there, too.

Lyle: Lyle miss you, Lyle sad. Lyle say "boo hoo"! (And here it all begins again!)

I guess we are all processing this in our own way - some of us more concretely than others.

Good News, Bad News

I talked with my surgeon today. He said that the MRI confirmed that there was no cancer in my pelvis. He also said that the T2 diagnosis was giving him second thoughts about surgery without radiation and chemo first. He suggested I see an oncologist and get more advice about the order in which to proceed. In the meantime, he is holding the possible surgery date of January 24.

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Dr. Whyte left a message yesterday on a voice mail saying that he wanted to give me the results of my MRI. I couldn't get back to him before he left. He was unreachable. Once again, I have to guess that it's bad news. I begin to have pain in my pelvis. How could I have missed it before. Sharon and I toss and turn all night in a panic about what this means. He would have said "no problem" in the voice mail if there was no problem...wouldn't he?

I finally caught up with Dr Whyte this morning and he quickly says that there was no cancer on the MRI. The suspicious area in my pelvis is just a little irritated, maybe from some arthritis. My pelvis area stops having symptoms. That's great news! What isn't so great is that the T2 diagnosis on the cancer may mean that I should have radiation and chemo before the surgery. He suggested an oncologist and will set up an appointment tomorrow. I am working with a client today and was scheduled to work tomorrow. The client is wonderful about postponing my work for another two days until I can get back.