False Start

I was eager to meet with the radiation doc last Wednesday. It felt like this was the point where “the rubber meets the road” in terms of real treatment. Much like my oncologist’s office, the radiation doc’s office is extremely well run with kind, understanding, and prompt staff, led by the example of the physician. He anticipated nearly all our questions and set us at ease for the processes to come. Given the negative results of all my tests thus far, he felt that the retuxan medicine will not be needed and that I will go on a 4-week course of radiation, 5 days a week. The dosing, as I had been told earlier, is relatively low, and my side effects are expected to be minimal – with little nausea or lack of energy. When I have the radiation treatments, I will lay in a sort of cast so that the beam can aim very accurately each time. And I’ll get a couple little dot tatooes to help them set it up each day.

After the 4 weeks of treatment, we then wait another 5 months before doing an endoscopy to confirm success. This errant tissue continues to shrink after the radiation, and doing the endoscopy sooner would not yield accurate results. So there will be more waiting, and I’ll have a chance to continue my ultra-health, macrobiotic, phytonutrient diet. I came away from the appointment energized and ready to go.

But, as I said last week, they didn’t have “all the results,” and they still don’t. In fact, it’s now becoming a much more protracted process to confirm what the PET scan indicated might be going on in my lower intestine. The capsule cam doctor called to tell me “good news” that the test was effectively negative but that it was a “sub-optimal” study, which he had to explain to me. It seems the capsule cam’s journey did not go as planned. The little camera carries an 8-hour battery, taking two pictures a second as it tries to wend its way gradually through my entire digestive system. In my case, though, the camera spent 7 ½ hours in my stomach before starting into my intestine, where the battery died before getting to the area they hoped to examine. The doctor was quick to tell me that “this almost never happens.”

So . . . the gastroenterologists talked and came up with a couple options: One would be to repeat the capsule cam study but to launch the camera endoscopically, placing it just beyond my stomach. The other option would be to do a more elaborate and invasive new procedure called a double-balloon endoscopy which would send a specialized, extra long endoscope into my intestine, using a pair of expanding balloons to help the scope creep through my bowel. He was opting for the former procedure. One problem, however, was that my insurance had denied the capsule cam study the first time as “investigative,” and they needed to be convinced that the study was valid both the first time as well as in the proposed, more involved, follow up version. I began marshalling all my doctors to write the insurance company and weigh in on the need for these capsule cam studies.

Then, as the letters were going out, the capsule cam doc called me again to say he realized that, even if the capsule cam study had worked and shown a negative result, that it wouldn’t be conclusive. A positive finding would have shown exactly where to focus further attention, but a negative result would seem to him inadequate. So now - forget the second capsule cam study and let’s do that "very effective" double-balloon procedure that the day before seemed needlessly risky. Are you still with me? - because my head was starting to spin. Cedars-Sinai has two very experienced specialists in this procedure who, guess what, are the same two guys that do that endoscopic ultrasound and are still booked several months in advance. However, I might get to jump the line a little. We’ll see.

The other issue is that it isn’t clear enough from the PET scan whether this procedure should enter me from the top or the bottom. To get that information, there are two possibilities: One of them is – can you guess? – a capsule cam study launched from beyond my stomach. The other is a specialized CAT scan enteroscopy. Since the radiation doc wanted to do a CAT scan, I asked him if we could accomplish both procedures with the same scan. Alas (of course), no, these are two different kinds of looks at the same thing. (I’m still not so sure.) Meanwhile, the radiation doc wants to put everything on hold pending resolution of the lower intestine issue, and I got a nice phone message from the oncologist that he had sent that letter to the insurance company about how valuable the capsule cam study is . . .

Yesterday, I had the CAT scan enteroscopy, which, save for the moments of acute pain during the bone marrow biopsy (my hip bone is still a little sore), was one of the least comfortable procedures I’ve had. While they didn’t use any radioactive materials, they still filled me with barium smoothies. Then they gave me drugs to bloat my system and charge it with digestive activity. At the same time they gave me a medication to shut down my bowel activity for an hour. So you really have to go, but you physically can’t. Then they added IV iodine for that nice warm feeling I didn't invite. The scan itself was relatively easy, but I have been gassy, bloated, and queasy for the last 18 hours.

Meanwhile, we are inquiring into other local doctors with a specialty in double-balloon endoscopy and an earlier availability. And all of this is to confirm something that most of the doctors think will be negative and insignificant. Everyone wants to be careful, which is nice. I’m just constantly reminded of my wife’s wonderful Yom Kippur sermon admonishing me to use my waiting time in a positive way. Maybe I’ll take up boxing.