August 22, 1999 - August 28, 1999

Sunday, August 22
We drove up to Oakland to pick up Don's mail. Don had forgotten to bring his house keys, so we rang the front door and were greeted by Jessica in bicycle gear. Don mentioned that we were going hat shopping and pointed to a small bald spot on his temple. "It's coming out by the thimble-full," he said.

He also showed her where the "sunburn" effect of the radiation was causing his skin to flake. "We have so much in common!" Jessica said. "We both have lizard skin and brain tumors!" She had just gotten the results of her MRIs the week before, and they showed she had a pituitary tumor. She told us that the medication was causing her nausea. I offered to put her in touch with my ex-wife, Sara, who has been on medication for a pituitary tumor for nearly twenty years. She didn't express an interest, but did say she was going to make a hat for Don.

We then drove to Davis's place in Berkeley. We both admired Davis's collection of elephants - elephants in pictures, little statuettes, Gnishes, elephant prints on the pillows and sheets, elephants everywhere.

Davis went off to his tiny kitchen to prepare a stir-fry lunch for us. Don seemed oddly subdued. I couldn't tell if he was tired or depressed. Davis indicated that he would like to chat while he cooked, but Don stayed in the livingroom, saying he would prefer to sit down. Davis put on a CD that was a fusion of jazz and Indian music. About halfway through the CD, Don confessed to me that he didn't really like saxophones.

After a delicious lunch, we went to the Berkeley Hat Store. I kept trying to get Don into a beret (well, his head, at least). He was more interested in a fedora. I took pictures of him in both and said I would put it up to a vote for the readers of the Don Watch Journal, so here it is:
I have to tell you, though, he looks pretty good in the Indiana Jones fedora.

After the chapeau shopping, we headed over to Amoeba Records for some discount/used CDs. I bought a few, including a Michael Tilson Thomas arrangement of Prokofiev's music for Romeo and Juliet. The balcony scene has some lovely and surprising saxophone scoring and I wanted Don to hear what they could sound like when there were in a romantic mood.

We had a snack at a local coffee house, then Davis said he had other commitments this afternoon, and we took him home and headed back to Mountain View.

We stopped in Palo Alto to shop at the Walgreens on University. I have been having some digestion problems lately, frequently waking in the wee hours with an acid stomach. The last time this happened, back in 1990, I took Maalox, so I wanted to get some to have on hand. Plus my therapist suggested that it might be easier on me if Don put his medications in a week-long, daily labeled pill box. I had mentioned this idea to Don a few weeks ago, but he said he didn't think it was necessary. The therapist suggested that perhaps easing my anxiety over dosages and timing was reason enough. In other words, reagardless of whether or not it helped Don, it would help me, and that was an important consideration, equal to Don's feelings about it. I liked this advice.

There was a street fair on University Avenue, so we browsed through it. We thought about seeing The Wizard of Oz, which was playing at the Stanford that night. Don said he'd never seen it on the big screen. We had dinner at The Good Earth, where the service was much better than last time. Afterwards, realizing we still had grocery shopping to do, we agreed to put off Dorothy and Friends.

We got home in the early evening, well in time to watch the sunset from my back yard. Later, we sat around the dinner table and tried to sort through Don's medical bills. I was trying to organize the benefit statements he'd received from Blue Cross and determine which bills were still outstanding. I told him I would gladly follow up on some of the ones that were beginning to say things like "deliquent" and "up for collection." Clearly, these were bills that had fallen through the cracks when Don switched from California Care to Prudent Buyer. It did not seem to matter that both were Blue Cross plans; all these creditors could get out of the insurance company was the Don was "dropped from enrollment" or "no longer enrolled" or "not covered by insurance."

One of the bills had this printed across the bottom:

THE DELINQUENT PATIENT BALANCE DUE IS IN OUR COLLECTION REVIEW PROCESS. UNLESS YOU PAY THE DELINQUENT PATIENT BALANCE DUE IN 10 DAYS, YOUR ACCOUNT WILL BE ASSIGNED TO A COLLECTION AGENCY WHICH MAY AFFECT YOUR CREDIT RATING.
**** THIS IS YOUR FINAL NOTICE ****

This was Dr. Lowenstein's bill. It was in order to see Dr. Lowenstein that Don had changed plans in the first place. "Too bad it didn't do me any good," Don said. I had to agree. The only thing we got out of Lowenstein was an apology. Still, that's more than we got out of Santa Rosa.

We put the pills in the week-long pill box, Don bravely struggling through the indestructable packaging of the Thalidomide, while I counted out the pills and made sure the dosages were right. Later, I played the Tilson Thomas CD while we were lying in bed. To my great disappointment, MTT had rescored the suite, completely eliminating the lush saxophones I so wanted Don to hear. Ah, well.


1. At Davis's House



2. The Great Hat Debate


Monday, August 23
7:30 AM came way too early. I could barely get out of bed. It seemed to be even harder for Don. I don't think having an early morning time slot for his radiation therapy is going to work out. He's going to be so tired from waking up early, and so worn out by the therapy, that he's not going to feel like taking the train up to San Francisco to go to his job, which was the point of getting the early morning time slot in the first place.

While Don was "getting zapped," I went upstairs to Dr. Peterson's office, where I talked to Deborah. When I mentioned that this was the third time I had given them the address of Don's primary care physician, she said that she thought that they really did have it here somewhere. I also told her about the plans to have the MRI done at UCSF on the 27th of September, rather than wait for an appointment at Stanford in October. I had still not heard back from the clinic about the MRI or the appointment with Dr. Peterson. We were standing right at the clinic administrator's desk, so we took care of those things right then and there. Deborah cancelled the MRI request and I set up an appointment for Don with Dr. Peterson on the 5th of October.

Don was very sluggish when we left the radiation therapy waiting room. I suggested that perhaps I should take him home, rather than to the train depot, so he could go back to bed. He agreed. On the way home, I set his chair to lean back, and he closed his eyes.

Tuesday, August 24
We were asked to wait "for the doctor" after Don's radiation treatment this morning. I had come along because Don had an intake interview scheduled with Dr. Freinkel at the Complementary Medicine Clinic at 10:00 AM and I wanted to take notes. We had planned on having breakfast in the Cafeteria before walking to the Clinic, so this meeting was unexpected. I was expecting Dr. Hancock or Dr. Mehta, perhaps with information on the progress of the treatments. Instead, we got Dr. Richards, who said she was standing in for Dr. Hancock this morning. She had a brisk manner and an eager expression on her face, which she tended to thrust forward as she spoke. She started right in, summarizing Don's treatment dosage:

Richards: You're currently at 3600, and you're going up to 6000. In another five treatments, they're going to a smaller field.

(This jived with what Dr. Mehta had told me at the very start of Don's treatments.)

Richards: You've had no problems with headaches, blurred vision?

Don: I have a field cut, so vision is problematic.

R: Has this been since surgery?

D: Yes.

R: Has it improved?

D: My neuropsychologist says it has improved. It seems to be cut mostly in the middle.

R: You had bloodwork done yesterday?

(This question came so fast that I didn't have time to correct what I thought might be a mistaken impression. Don's field cut showed up after his surgery at Santa Rosa Memorial in December, not his surgery at UCSF in July. Since she seemed to be driving towards some point, I thought it best not to interrupt.)

D: No, earlier.

R: I don't have the report on that yet.

D: The Dilantin level is important. We have to keep track of it.

R: Are we doing that or is neuro-oncology?

D: My primary care physician is on top of it.

R: And you're taking Thalidomide? How's that going?

D: I'm better this morning because I took it earlier.

(I didn't understand this answer, but again, I didn't interrupt.)

R: I'd like you to know that we're taking pictures as we go [through the radiation therapy], and those look good, right on track. Dr. Hancock will be back next Tuesday.

Lou: Is there anything we can do about the flaking and skin irritation?

D: I'm using aloe.

R: It's okay to use a cream, but don't put it on before radiation treatment. Use it after.

L: You said you were taking pictures. What kind of pictures?

I was wondering if perhaps they had some way of tracking the tumor size as the treatments progressed, but Dr. Richards's answer dispelled that. She said, "The machine we use to generate the high-energy X-rays also generates plain X-rays. It shows us the bones. We do it to 'q.a.' our work, to make sure we're still on target. And we are."

With that explanation, she got up and shook our hands and left. Since it was now 9:15 and we still hadn't had any breakfast, I thought it best not to bother her with corrections to little details.


Our next stop after breakfast was the Stanford Complementary Medicine Clinic, where Don had an intake interview scheduled with Dr. Andrew Freinkel. Dr. Remen had recommended Freinkel as someone Don might like to talk to. He had been recommended to Dr. Remen by Ellen Hughes, who told her, "I met the young new medical co-director of Stanford's Complementary and Alternative Medicine clinic (Andy Frainkel M.D.) who says that they're now running in the black.... Andy Frainkel from Stanford is a brain tumor survivor himself, which he attributes to using complementary and alternative techniques. He specializes in working with patients with brain tumors."

This information turned out to be slightly mistaken, as would gradually become clear in the interview.

We arrived on time and Dr. Freinkel arrived shortly afterwards. He is a heavy-set man of medium height with large curly hair covering his head. It is apparent if you look closely that the hair is less abundant on the left side of his head than elsewhere. He began by asking Don, "Tell your story."

Don did an excellent summary, not missing or misdating any of the major events, starting with his hemorrhage in December, rehabilitation at Kentfield, angiogram at Marin General, and the bump on his head that led to the discovery of the tumor. He praised Dr. Berger's surgical skill, and Freinkel agreed.

Freinkel: Berger is heir to the Charlie Wilson "machine." Good hands, there. What happened next?

D: Ninety-five percent of the tumor was removed. The pathologists diagnosed it as glioblastoma multiforme, grade 4. The neuro-oncologist -

F: Who?

Lou: Prados at UCSF, Peterson here at Stanford.

F: So, there's some confusion of who's in charge.

Don then described how he ended up on the Thalidomide protocol.

F: The big thing to avoid there is being pregnant.

D: I'm being careful.

L: We're both being careful.

D: We've been looking at the web, reading things, and Prados is the guy.

F: He's a guy. There's about seven of them in the country. Prados is clearly a good person to be in charge of your care.

D: I've also asked a Chinese herbalist to help me with immune system building. I told Prados about that and he said it was good.

F: Who's the Chinese herbalist?

D: Michael Broffman.

F: Yes, he's well-known.

D: I've recommended him to Commonweal patients and the feedback from them has been uniformly good. And I've been consulting with Keith Block in Chicago.

F: Evanston, actually. So, you're getting care. You're on Thalidomide. That's good.

D: My understanding is if I'm not in remission at the end of radiation therapy, I'm in trouble.

F: Due to the (until recently) relative rarity of this kind of tumor, the amount of data on it is limited. Most of the existing data is on people who were in their 70's when they were diagnosed, so the data is skewed.

D: I've spoken with one person who did radiation and chemo and recovered. There's one other person I know of, but he hasn't called me back and I guess he's reluctant to speak to me. But there are a number of people who have recovered.

F: See, that's the thing.

D: If there are people out there who have recovered, I can do that. There is no use in fighting what's happening, what is, what the universe has in store. But I understand a lot of the final outcome has to do with me and my role. I feel I have an active part in this. I'm not just going to sit back and let therapy "happen." And I'm not alone it this. There are hundreds of people in a prayer circle for me. I think they are my biggest resource in taking care of me.

F: I agree with the prayer circle. I don't understand it, but it's at least as powerful as a chemo regimen.

D: I'm pretty clear that's what saved my life in December.

F: Why didn't they find the tumor then?

Don went silent, kind of frozen in mid-gesture. Finally, I said, "Santa Rosa messed up. No one did a follow-up MRI."

F: Do you have any questions you'd like to ask me?

D: I understand you have some experience.

F: I started out as a neurologist, but didn't like it. I came here.
[Details about Dr. Freinkel's bout with a brain tumor have been omitted at his request. His opinion about brachy therapy, however, played a role in our decisions, so I include it here:]
F: [A doctor at Bringham in Boston] suggested brachy therapy. He said it 100% cures cancer. But it has a side-effect. It causes your brain to liquify. They call it radiation necrosis. They don't tell you that.

D: They told me.

F: In six months, when there's an area of necrosis, they'll say it could be necrosis, could be tumor. So, more radiation. There's a reason why this field is separated into radiation guys, oncology guys, and surgeons. No one wants to take the heat.

L: We know it's not recommended to have more than 6000 rads, or Grays as they're called now, which is what he's getting. It's unlikely he'll get radiation again.

F (to Don): Let me see your head. (He examines it.) Yeah, that's a good place to have it.

Don related some of Hancock's better quips: it's good to have it in the temporal lobe because we don't know what it does anyway, as well as the remark about one of the brain functions being "in the bottle now." Don was chuckling as he told Freinkel these.

F: A lot of gallows humor there. It'd be a lot funnier if it were happening to them.

Don spent some time explaining about QEEG and the work he had been doing with Angelone, which brought Freinkel back to the story of his search for therapy.

F: So, here's this guy who says, basically, we want to kill you. And something clicked. These guys - the hypocratic oath, "First, do no harm" - has gone out the window. Because it's so serious. But they're not expecting you to live more than ten months, so it doesn't matter. (Changing tack:) What are you taking now?

D: Thalidomide, 400 mg. I'm taking it in the evening, so I'm not so sleepy now.

F: It's a minor tranquilizer.

D: Minor?

F: A certain amount of fuzziness comes from brain radiation.

D: I'm good at fuzziness. I tried for a long time to understand why I was so traumatized by something I couldn't even remember.

F: Clearly, there are elements of enormous trauma here. But there are neurological elements here, too. But part of it is a defense mechanism.

D: I talked about this lack of memory with a friend of mine. She suggested I not try to recover it.

F: I agree. And you probably couldn't anyway. There is a shut down of the memory when something like that happens.

D: Yeah. I'm no longer interested. Right now, it's history.

F: I agree a million percent.

D: Right now, I just want to stay alive.

F: I understand that. I moved away from medicine. I realized these people aren't interested in helping me, but in marching me through stages towards death. Your survival depends on your ability to believe you can survive. And the way to manipulate beliefs is through relationships.

Dr. Freinkel then explained the four types of doctor-patient relationships that he thinks are important to a cancer survivor:
  • Type 1: The doctor and patient agree that the patient is going to be fine. Example: a broken arm.
  • Type 2: The doctor believes it, but the patient does not. Example: psychotherapeutic drugs. Often, the patient sees no immediate benefit. The doctor carries the belief structure along until the patient believes it, too.
  • Type 3: The patient believes it, but the doctor doesn't. Example: "fatal" and "terminal" illnesses. The prognosis is predetermined by the doctor.
  • Type 4: Neither the doctor nor the patient believe the patient will survive. Example: 82-year-olds with metastatic cancer. An arrangment is made for hospice care. Very few people walk out of a hospice.
Frainkel concluded his taxonomy by saying, "Find the relationships that militate against survival and marginalize them."

D: I'm not ready to die, and I'm willing to spend a fair amount of energy to get my way.

F: Recommendations: You are much better equipped than any patient I have seen for survival. You are working with Prados and Peterson and are comfortable with them. You would not experience it as stress to leave that door open. [I don't know what he meant by "that door."] You are able to do research. You find everything you can do that is not toxic. I would ask you to look into retinoic acid as a differentiating agent.

L: Yes, it's on our search list, and so is phenyl butyrate.

F: Phenyl butyrate is pretty toxic in its delivery. Burzynski probably has the most experience in this area.

D: I think he's the real thing. But it's pretty expensive.

F: I went down to see him. He's got an autographied picture of him and the Pope.

L: How can you tell them apart?

F: There may be clinical efficacy in phenyl butyrate. The idea of being on a pro-differentiating agent is good.

D: I understand Vitamin A is, too. Should I find a practitioner to prescribe it or self-medicate?

F: Victor Levin at M.D. Anderson in Houston knows the most about it. I'm sure Prados knows a lot about it. The thing is, they're pretty much by-the-book people. If you're on a protocol for one thing, they won't want you on another.

D: I continue the Thalidomide for two weeks after radiation.

F: Oh, then, remind them when you come off. Call Genentech about anti-angiogenesis factors.

D: Thalidomide seems a promising thing. It works like an anti-angiogenic agent, but the protocol only lasts for two weeks after radiation.

F: And so why do they take you off it? Because it's a protocol. Other recommendations: Resume a regular meditation practice. Same time, same place, each day. How about nutrition?

D: I'm taking herbs and anti-oxidants.

F: What? You're not on anti-oxidants now, are you?

D: No.

L: Yes, you are.

D: I asked Andy Weil, and he said not to take anti-oxidants during radiation. When I asked him about the evidence on this, he said, "It's obvious." But Keith Block says it's okay, that Andy's opinion is a mis-reading of the evidence. So, I have confidence in Keith. I've also talked to a person from Andy's office -

F: Tracy?

D: Yes. Wonderful person.

F: I love Tracy.

D: She said to continue with the anti-oxidants.

L: I'm not sure that's what she said.

F: I can see why Andy said that, to stop. That's how radiation is supposed to work. You should bring the radiation therapist in on this. You've got a lot of advice, and you're going to have to decide what's right. Having engaged in the radiation treatment - I would run it past these people. Just so, in your own mind, you can weigh them.

D: Well, unless Andy says it's all right, I'll just stop.

F: But certainly you should be able to get Keith Block to talk to Tracy Gaudet. You're in a position to ask why he feels this way. Just because he's your friend doesn't mean you shouldn't hold him to the same standard of evidence, data. I know Andy is all about data.

D: I think the world of him.

F: You don't want to leave anything out, but you don't want to be stressed out by trying to mediate between conflicting friends' advice. Have you looked into Chi-qong?

D: I've practiced yoga for years and don't feel I have enough time to take up another physical discipline.

F: There's a chi-qong master, Master Fu, who lives in Florida. He has had success - good data - with cancer. He's got an acolyte named Devatora Holman who lives in Kentfield. He's in town this week. You should try him. The thing is, either you'll feel it is energy medicine and it's working or you won't. Get in touch with Devatora. She's rather reclusive, unlike most others in complementary medicine.

D: It would have to be after radiation therapy ends. I don't think I can make it to Marin these days.

F: I am by no means a religious person, but you might want to read Elizabeth Targ's paper on distant healing. You are so far ahead of most patients, who would not be looking into this while under radiation.

L: Don does the internal work, I do the external work.

D (to Lou): Too bad my internal stuff doesn't help you.

L (to Don): Yes, it does.

D: In December, when I was very close to death - There is a pattern that is me that I was not able to hold together myself anymore. But a whole community of people, with intention, was able to hold it together for me.

F: Beliefs emerge from relationships.

Dr. Freinkel had spent over two hours with us. He now concluded the interview, telling Don, "I am available to help you in any way you want."

Don's energy and alertness were at their peak at the start of the interview and stayed that way until it came to the discussion of anti-oxidants. I saw him withdraw, his head lower, his eyes become fixed on the floor in front of him. The "scolded boy" look. I thought Dr. Freinkel's assessment that Don should not get involved in settling disputes among his therapists was right on target. It's not Don's role to settle disputes or resolve conflicts, but to find the answer that reinforces his belief in his own survival. Focusing on what's best for him, not what's best for his community, is difficult for him. I hope he can do it.

Wednesday, August 25


Thursday, August 26


Friday, August 27


Saturday, August 28




Previous week August 1999 Following week
© 2000 Louis Flint Ceci / ceci@best.com