[Ed: I have never written what people call a Christmas letter but this account of our life in August and written on the Labor Day weekend begins to sound like one. So, without any experience in the game and for those of you who don't care about details, let me first give the bottom line and say that we are at the end of our first week of chemo- and radiotherapy. As I very recently wrote to a friend, I am having trouble to get B to eat much or even to drink anything. Getting her to drink a glass of water to wash down the chemo pills is a nightly struggle. (Water tastes bad to her. Clear juice or some other flavoring for the water is allowed but that does not work much better.) Her leg muscles are atrophied (that condition has been named sarcopenia in recent years) and she is unstable when walking. And she is feeling the dread nausea. Her medical treatment seems to focus on the tumor while not much attention is paid to the patient. I suppose that all that the patients suffer is well known and not much can be done about it.]
We left Memorial Sloan-Kettering Cancer Center [MSKCC] for home on the afternoon of August 3 with a new load of medicines, a cane and a walker. Barbara was visibly in a very delicate condition after her seizure a week earlier. She was still hardly able to speak, was extremely fatigued and her walking was very unstable. It seemed to me that she should spend a bit longer in the protective environment of the hospital but I was given various reasons why she should go home.
Worse than all of these problems, was that she was apparently did not appreciate the
nature of the state she was in. This meant that she did not take appropriate precautions in all her actions and that I had to watch her carefully.
Another problem was that Barbara has for some time gotten up often during the night
to go to the bathroom. The frequency of these excursions had gone up, or so it seemed to me, to more than twenty trips a night. Though she preferred sleeping in the bed in an alcove of our small room to facilitate these trips, I got her to return to the large bed in the bedroom. I also wrapped my exercise bike in a large comforter and put it on her side of the bed so that she was protected from falling out and could not leave the bed on her side. That way, she pretty much had to awaken me when she left the bed. (She tried to avoid this but I tried to sleep lightly.) Another one of her preferences is to wake up at night to
read. She did not like waking me with the reading light but I persuaded her (nearly) to not worry about this.
These problems were exacerbated by her sleeping most of the time during the day so
that she did not sleep well at night. Her lack of physical activity prompted Dr. Omuro to prescribe daily injections of an anti-clotting agent (fragmin) since lying around all day does promote clotting. At first, visiting nurses administered the injections but they insisted that the insurance would stop paying for this service and that I had to take it over. I did this for a time but finally Dr. O. agreed that if she took two short walks per day, we could stop the injections. This meant I could replace the onerous job of injecting by the more difficult one (sic!) of having to persuade B to take walks. There were other tasks that kept
me busy most of the time, even with B sleeping a lot. Surprisingly, getting food (even with
help from several kind people) and organizing the ingestion of the right pills at the right
times took much time. But even more surprising was the time devoted to phone calls and
emails. The result of all that is that the first three weeks of August are pretty much a blur
of sleeplessness and nervous strain that I won't even try to reconstruct here.
It turns out that Barbara is now in no condition to deal with our admin and I never
was. Lea Tresser did a good piece of it in mid-August including dealing with the insurance
claim for a mild auto accident back in June. The insurance was with AmEx who wanted
to know who our regular insurer is. That is a piece of information that Barbara did not remember and I did not know. But it got sorted out in the end (though we have not
been reimbursed as yet). This is just a sample of the things that surfaced when Lea went
through the papers.
At last, toward the end of the month, we began to get ready for the treatment. Getting
the first round of pills for the chemotherapy took quite a while, but they finally came. There
were only enough for 21 days and, when the treatment plan was unexpectedly modified to
a six-week uninterrupted run, I was afraid I would not get the remaining pills that were
needed in time. Fortunately Lea Tresser stepped in again and, after spending a couple
of hours on the phone dealing with the various people involved, managed to expedite the
shipment. So we are set for the long haul.
We also got going on preparations for the radiation. This involved sitting (lying, actually) for the making of a mask to ensure that Barbara's head is in the same place for every
session. There were the usual confusions about appointment times but we finally made it
through all that.
For those who do not know how radiotherapy works, let me just say that several beams
of energetic x-rays are fired through the head from different directions. All these beams
intersect in the tumor which then gets a heavy dose of total radiation. The other parts of
the brain, being in the path of only one beam, get much less. This works well when the
tumor is well concentrated as it was in early May but, by now, there has been noticeable
growth and spreading. It looks fractal. (Perhaps all the intermediate steps were not needed,
as I had mildly suggested back when. In fact, on seeing the first MRI from very late April,
Dr. Gutin had already said it was a glioma.)
Finally, on the evening of Sunday, August 29, we started the chemotherapy. This involves
taking an anti-nausea pill an hour after dinner and then the three pills of Temodar (trade
name) an hour later, right at bed time and with a reliably empty stomach. (The separation
times are the ones I settled on among some slightly different suggestions from different
experts. These differences, I suppose, mean that the best time intervals may not be known
exactly.) The pills are to be washed down with a full glass of water but Barbara has been
resisting drinking water. I have found that she does not mind drinking fruit juice as much
so I consulted the pharmacists to learn if juices are an acceptable substitute for the chemo.
A suitable mixture of clear juice and water seems alright, though she is resisting this quite
strongly as well. The only effect I noticed on the first night of chemo was that Barbara's
trips to the bathroom became quite infrequent, almost worryingly so. But she is getting back to her normal state in that regard after five days of irradiation. However, weakness
accompanied by dizziness and nausea have now set in.
On the first morning of radiotherapy, we took a cab home after a brief detour. As we
got to the cab, the driver rolled down his window to ask our destination. In the instant it
took to respond, Barbara gained a step on me and entered the taxi. In doing that, she hit
her head. It hurt but, as she is not speaking well, I couldn't tell how much. When we got
home, she slept for three and one half hours (not unusual) and, when she got up at my
urging, she had a headache. I called the oncologist's office and was told to get her to the
urgent care unit of Sloan-Kettering. After a great effort to get a cab (it was 5:00 pm and
just about every cabdriver was off duty) we got to MSKCC. There we found a mob scene,
quite unlike what we encountered there when the seizure struck. (I was told this difference
between evening and early morning in the urgent care unit (= ER) is normal, so schedule
your crises accordingly.)
We spent the next five hours in the UCU where a check for internal bleeding was made
with a CAT scan. After four of those hours, the doctor came by and said there was no
bleeding and things looked good except for a bit of swelling that is expected from the
treatments. The doctor said we could then leave. But there was still an IV and when,
after an hour, no one had come to deal with this, B started to pull at it. I did my best
to dissuade her and rushed around to find the nurse. The nurse had not heard that they
were done with us -- another missed communication of the kind that seems fairly normal.
As we were waiting for the nurse to unplug the IV and let us out we were provided with
a wheel chair. I had brought the chemo pills (brand name Temodar) since I had not known
when or whether we would be leaving that night. I asked Barbara to sit on the side of the
bed while I was preparing the meds for ingestion. I thought she was well installed when,
suddenly, she was falling head first from right behind me. Luckily I managed to grab her
in time. It turned out that she had decided to get into the wheel chair and tripped on it.
That was the closest call yet. As I have said already, Barbara seems not entirely aware of
her present condition and takes unnecessary chances. For example, as I saw her into bed
at home on that night, I found her IV on her night table.
The week continued with various other minor events and highlighted by our daily visit
to MSKCC for radiation treatment and the painful experience of getting B to wash down
her chemo with a full glass of water. Most of the rest of the time, Barbara slept, even in
the taxi to MSKCC. This left me to do various household chores answer the phone and
try to read some of the literature on complementary treatments such as cannabinoids. B's
doctors do not seem very interested in these. I can imagine that they see no reason to
listen to an astronomer about such matters. And, after all, how many physicists know
much about string theory? Of course, ignorance about string theory is not so harmful even if Engelbert and Predrag are not so keen on it. On the other hand, there is by now a
reasonable literature about cannabinoids that, to this layman, looks very serious.
On Thursday, we got to see Dr. Yamada about how things are going. The radiation
treatment is progressing smoothly and we learned that there will be only five weeks of radiation treatment. I inquired about the value of cannabinoids for supplementary treatment.
Dr. Y. said that I should take this up with Dr. Omuro whom we are not scheduled to see for about three weeks. This is a very discouraging situation and I am not sure how to
proceed in the matter. For those who are interested, there is
a review by Manuel Guzman (the reference was provided by a friend of
Barbara).
[Predrag: for an overview of the literature and clinical trials, see this and this.]
For some time now, Barbara has been coughing at night with a very occasional sneeze.
On the Friday before Labor Day, her nose was running, so I called the office of the oncologist. I got the voice mail and left the number of my newly acquired cell phone since we
were heading off for radiation treatment. Indeed, they called back rather quickly but this
was one of the times that the phone decided not to ring, as it does now and then, so we
did not make contact till afternoon. After a couple of calls back and forth it was suggested
that we take the problem to Barbara's primary care doctor. (On the Friday afternoon of
the Labor Day weekend!) B was not too keen about this suggestion since the guy never
turned up when she was in the NYU Hospital (his hospital, I believe). So now we are into
the long weekend and watching carefully. (At least, I am.) We even have Monday off from
radiation.
[All I would add is a remark that Pascal (and perhaps others) made to a correspondent:
If I had had more time, I would have written less]
