Today we didn’t have to be any particular place at any particular time. What a luxury! We slept a little late, lazed over coffee and the newspapers for much of the morning, and went out to lunch with my aunt. After lunch, my sister Melanie and her boys, Max (29 mo.) and Reed (4 mo.), came over and stayed until about an hour ago. While I’m feeling less stressed than at the end of the past three days, I’m almost as tired. It’s amazing that one small boy can wear out five adults in just one afternoon. Max’s favorite word (uttered at high pitch/volume after an adult has done something that is both fun for Max and stressful to said adult’s body): AGAIN! It is good to feel tired physically, rather than – no, make that as well as – emotionally.

Late this afternoon Dr. Weber called with the recommendation from the head and neck conference. The Official Word: MD Anderson recommends surgery. They can’t give Paul a large enough dose of radiation to feel confident of its being curative. After saying to contact him if there was anything else MD Anderson could do for us, Dr. Weber’s parting words to Paul were, “Dr. Futran will do a good job.”

(If I thought that Dr. Weber was given to superlatives, his use of the word “good” would give me pause. As his style is measured, his comment made us feel comfortable with Paul’s decision to have the surgery in Seattle.)

Tomorrow we have another full day of hanging out with friends and family. I’d better rest up.

Too tired

Today was another day of waiting at MD Anderson. We spent a total of 5 hours waiting for about 30 minutes of doctor time… and that’s not because we were there early for the appointments. (Bangalore all over again.) Waiting is tiring. Talking with doctors about cancer treatment is tiring. I’m actually not sure which is more tiring.

Today’s appointments were the last of the consultation round. While we acquired some additional information at today’s appointments, none of it really changed the current plan, so I’m not going to try to write about it tonight. Tomorrow we’ll hear about tonight’s head and neck conference meeting, at which all of the physicians were to discuss Paul’s case, and get MD Anderson’s official treatment recommendations. We’ll write more tomorrow.


Once again, I’m too tired to write much. Just the facts. No humor content. Sorry.

The first appointment today was with Dr. Ang, radiation oncologist, who examined Paul’s mouth, reviewed his previous radiation history, and then told us he thinks that, in Paul’s case, surgery is most likely to be curative. The radiation/chemotherapy combo that Dr. Weber mentioned yesterday could be used in the area of the tumor itself, as Paul hasn’t been zapped there, but they couldn’t give what they would consider to be a curative dose of radiation to the lymph nodes in the neck. Why, we ask, is this important if there’s no lymph node involvement visible on the CT scan? Because, we learn, tumor cells are found in the lymph nodes of about 30% of patients whose nodes look normal on scans. (Ulp!) Therefore, when the treatment approach is non-surgical, they have to assume that there is in fact microscopic lymph node involvement, and zap the neck nodes. Oh, and chemotherapy on its own isn’t curative for this tumor, so any tumor cells that they might miss if by holding back on the radation would be free to go forth and multiply… not good. If Paul has surgery, and there is some lymph node involvement, the radiation dosage that they would give as “clean-up” would be less than the “main course” dosage, and he would be better able to tolerate that.

The second appointment was with Dr. Martin, oncology dentist, whose job it is to assess the teeth of potential radiation patients, and to extract them if they’re not healthy. That’s because, following radiation to the jaw and the subsequent reduction in blood flow to the area, it’s common that the wound caused by any tooth extraction will not heal. (Yikes!) So, if you have that radiation, you become a “frequent flyer” at your dentist’s office, have to apply flouride to your teeth daily, and pray that you never break a tooth. Fortunately, Paul’s teeth are all in good shape. The dentist cleared him for whatever the radiologists might want to do to him.

It appears that, after a brief lag, surgery has pulled ahead again in the race for the cure. We know more about the race today than we did yesterday; that is good. I expect that we’ll know even more tomorrow…

… oh, and today the train to Bangalore was on time.

The train to Bangalore

I saw a TV documentary once about the civil service in India and how it was, for the public, one of the most impenetrable bureaucracies ever created. Our visit to MD Anderson yesterday brought that back to mind. The medical staff there was very competent and nice, but they were hidden behind a wall of clerical staff for whom serving the needs of the patients apparently ranks very low on the priority list. Besides the one who veritably oozed attitude, or the one whose short-term memory was measured in nanoseconds, were the ones who, because of poor education or lack of intelligence, were mere functionaries in a system of rules designed to limit the damage available to someone of poor education and lacking intelligence. It was mind-numbing and soul-sapping.

We’d been told that our appointment was at 8:30, and that new patients needed to arrive an hour earlier for registration. “So,” I repeated back to the person calling, “appointment at 8:30, show up at registration at 7:30.” So, when we got to Houston, we dutifully show up at 7:30, thanks to Kimberly’s masterful navigation of the highway system, and getting up way too early.

The attitude-droid checks us in at the registration desk, and says “Have a seat, someone will call you.” We find chairs in the large waiting area. 40 minutes later, after quite a long time of not being called, and seeing more recent arrivals rescued from the oblivion of the waiting room, I go back up to the desk. A helpful volunteer intercedes to offer assistance. (She has, perhaps, been trained to prevent patients from bothering the attitude-droid.) “My appointment was supposed to be at 8:30, and nobody’s called us, and it’s already 8:10,” I say, calmly but with a hint of agitation. And so I found myself on the way to Bangalore…

Attitude-droid chimes in with the assertion that my appointment is at 9:30. A long back-and-forth ensues about what we were or were not told by the scheduler, and blame is repeatedly deflected. The never-mistaken computer record of our schedule is cited as authority, and finally grudgingly accepted as, if not the truth, the Way It’s Going To Be, since it becomes clear that, if Attitude-droid and Helpful Volunteer believe in the divinity of the computer schedule, so also do the doctor’s minions upstairs. We will not miss our chance to see the doctor, we will just never have that hour of our lives back. Sigh.

(And why did Attitude-droid not say something, when we checked in TWO hours early, instead of the already well-padded one hour? Because she is Attitude-droid, and angry about her life and her job, and really wishes patients would go away so she could do her job, even though she hates that job and her job is to talk to patients. Perhaps you are getting the picture?)

I’ll skip over the ridiculous registration process snafus and annoyances, and just get to our arrival at the Head and Neck Center. Oh-my-oh-my. There is a line for the check-in window. It is so long as to have lost all definition as a line, since it is moving so slowly, and the waiting area is so crowded, that it is hard to tell who is just waiting, and who is waiting to get to the window. They start a line at a different window, back down the hall, the way we came, and through a doorway. We abandon the first line, and move to the other. Thankfully, this one is being tended by a higher-level droid, who has figured out that the sooner she finishes with the line, the sooner she gets to go back to whatever she normally does. Sadly, not everyone ahead of us in line has been paying attention. One does not have her 8-page history form, and claims never to have seen such a thing. One does not understand that the question “Who are you checking in for?” refers to which doctor, not which patient, and keeps repeating her daughter’s name. Finally we are checked in, which allows us to join the many others waiting in the crowded waiting area. The train to Bangalore does not arrive.

Though our appointment was for “9:30,” we do not get into an exam room until after 10:30. How can a system be an hour behind schedule so early in the day, I wonder. I spend much time pondering this, since I have the time. There is a charming ritual whereby an assistant calls you, you go have your weight, BP and temperature checked, and then you are cast out, back into the waiting room. Just in case you thought there might actually be some end to the waiting. Ha. Got you.

(While having my vitals checked, I talk to the med-droid “Suzanne” about how behind everything is, and how crowded. She talks about how one of the doctors has just returned from being away, and has a backlog of patients. She talks about how new patients take longer, and how that same doctor has 8 new patients today, an unusually large number. I question the logic of scheduling what sounds like more than a day’s worth of new patient intakes on the first day back after absence, when there is also a backlog of existing patients. She says something about how it’s hard to say no to someone with cancer, who may have been waiting.)

Once cast back into the waiting room, I spend time pondering the ethics of that situation. Is it better to tell them the truth, and give them a later appointment, or lie, giving them an appointment you can’t realistically keep? As someone with cancer, I think about whether I would have preferred the straightforward “no” of a later appointment to the passive-aggressive “no” of this waiting room. It becomes clear that our 8:30 appointment was probably moved, but no one contacted us, because, really, such details don’t matter.

I’ll cut this story short, as it has already run on, and besides, I have to go back there for another round of appointments shortly. There may or may not be significant news later.

Living in interesting times

I’m too tired right now to rant, so I won’t tell you about the hours Paul and I spent sitting in one waiting room or another at MD Anderson today. One of us will give you all the details some other time. I promise.

Once we finally got in to see Dr. Weber, what he had to say was interesting… in a “may you live in interesting times” sort of way. We did get the confirmation that we’d hoped for regarding Dr. Futran’s experience and competence at the surgical approach to this type of cancer. However, we also got the new information that MD Anderson’s preferred treatment of squamous cell carcinoma in this location is usually not surgery. They prefer to treat it with a combination of radiation and chemotherapy, which means less trauma and less potential loss of function (swallowing and speech). The question now is whether Paul’s head and neck, which had some radiation during the first cancer war, could tolerate enough radiation to make that approach work. Paul has 4 more doctor’s appointments in the next 2 days – radiation oncology and medical dentistry tomorrow, medical oncology and another appointment to touch base with the surgeon on Thursday. On Thursday afternoon the whole team of docs will meet “to talk about Paul behind his back” as Dr. Weber put it, and then they’ll make a treatment recommendation.

Needless to say, this puts the whole plan of action that we’d been working on into question. Great.