Since I could not predict when I would next get a chance to go shopping, I needed to conserve food as much as possible. I thought back to when I was a young child when I was what was called a poor eater (sic!). There was always food left after I ate. My mother ate those leftovers and I naively believed that she just did not like wasting food, especially after the difficult life she had had as a child. Only later, did I realize that this was a measure of economy. It is a painful recollection for me, but the experience served me well. Barbara is now a poor eater as she is ravaged by chemicals that attack fast growing cells (including some normal ones) and by radiation that makes one quite ill. She is eating very little and I frequently ate what she did not, following my mother's method. But in this case, the reason was not a shortage of funds but of shopping opportunities. However, once we started the treatments, our situation changed. Barbara's siblings hired a chef (Hiranth) who prepares meals for people and he delivers meals to us. That kept us going for four weeks from the start of the radiation treatment on August 30th.
Until September 22nd, we made our way every morning to MSKCC [Memorial Sloan Kettering Cancer Center] every morning for Barbara to be irradiated by energetic X-rays. It was slow going, getting Barbara through breakfast and getting dressed, but we did well at getting cabs and were always on time for the radiation treatment.
In conjunction with the radiation, I gave Barbara the pills that constituted her chemotherapy seven nights per week. These consisted of three capsules of Temozolomide (a.k.a. TMZ or Temodar) for a total of 125 mg. Those pills are taken daily on an empty stomach. The optimal time for this is bedtime so that sleep can minimize the awareness of the illness they cause. They are also to be preceded by an antiemetic (anti-nausea) pill by about an hour. This meant having dinner about two hours before before bedtime. So we were eating earlier than had been our habit before the illness. Even so, Barbara was usually sound asleep at pill time.
The TMZ is to be washed down by a full glass of water. I suppose the idea is that it should be dissolved in a fluid to be better absorbed by the stomach wall, but this is only a guess. Still, I tried to follow this rule laid down by the Medco pharmacists. The problem is that Barbara was always extremely reluctant to drink the water or juice, which I also tried. Getting her to drink that fluid was extremely challenging but I shall not enumerate the various devices I tried to get her to drink.
There were also other pills to be taken at other times and in various amounts. Fortunately, a visiting nurse provided us with a pill dispenser whose sub-boxes were arrayed in two dimensions, which made the task easier. Still, it is very hard to keep track of the pills even with this device since the instructions for taking pills come on partly printed, partly scribbled instruction sheets provided by the hospital. They obviously have some good software people and I do not see why they do not provide a more readable instruction sheet with clearer instructions clearly laid out. There should a also be a glossary of the different names each medication is known by since the instructions have a mix of technical names, brand names and popular names. It would also be useful to make a sheet with pictures of the pills including the possible shapes and colors they come in as one finds in the PDR, for example. It is a nightmare to keep track of such things especially given that there were some days when Barbara had to ingest as many as fifteen pills.
When we got home after Barbara's biopsy operation in August, I had not realized how complicated the pill program is. And we did not then know of the good pill dispenser. So when Barbara elected to deal with the pills herself, I naively agreed. Now that I have seen how difficult it is to deal with the pill dispensing, I am haunted by the possibility that she may have missed a dose of the anti-seizure medication back then.
I was also unaware of some of the side effects of some of the pills. Earlier, I wrote of Barbara's frequent visits to the bathroom during the night. After a while, I learned that the steroid she was on was keeping her awake and this was contributing to the problem. Those who know better, would not give this medication in the late evening as I was doing. Once I stopped that, our lives improved and we managed to get a few hours of sound sleep.
And so on through a number of such hurdles.
When the treatments started, Mimi invited Barbara to come to her apartment after the radiation treatment to have some physical therapy with her personal trainer. That was a great boon since Mimi's apartment is reasonably accessible from MSKCC. Nevertheless, Barbara's ability to walk kept declining.
On Sunday, Sept. 19, Mimi had just come by to bring something to Barbara when the downstairs bell rang. It was Joe Keller just back from France. His surprise arrival enlivened Barbara and she agreed to walk the three blocks to Washington Square Park. Mimi did not come all the way to the park but the three of us had a pleasant time sitting on a bench and listening to Joe's tales of the Loire. However, the walk back was extremely difficult. Barbara could hardly stand and her knee was very painful. We had to stop very frequently for her to rest by leaning on a car fender. At one point, we borrowed a chair from a restaurant for her to rest on. We made it home, but just barely.
On the following Tuesday (Sept. 21st), we left 67th St. after the radiation treatment for an MRI on 55th St. and then went on to an appointment with Dr. Omuro on 53rd St. (MSKCC has several campuses.) When he saw Barbara's condition, Dr. O. suggested that she should be kept in the hospital as an inpatient for the remainder of her radiation treatment. I felt this made good sense as Barbara did not make allowances for her infirmity. She would try getting out of bed and walking around and other dangerous maneuvers. Getting her to her radiation treatment was becoming very precarious. She had suffered through three weeks of the treatments and had two more to go. Perhaps all these symptoms would wear off by then. Barbara strongly rejected the suggestion that she be admitted to the hospital and after a long discussion I finally gave in. However the Urgent Care Center (the UCC) had already been alerted to receive her and it took a few hours to extricate ourselves.
The next morning, when we headed off for the radiation treatment, Barbara agreed to use a walker for the first time. As I hailed a cab, Barbara lost control and fell, hitting her knee and body and receiving a slight bump on the head (the right side, mirabile dictu). I reported this when we got to the radiology department since I was not sure that this would preclude radiation. Since Dr. Yamada was in Spain, we had to wait for the release by his cover, Dr. Chan. This finally came in the early afternoon together with Dr. Yamada's nurse's insistence that Barbara remain in the hospital. So after another few hours in the UCC, Barbara returned to her old haunt, the neuro-surveillance ward. I stayed on with her till visiting hours ended and left after reviewing her medications with the night nurse.
As I exited on to the street, the nurse caught up with me and reported that he did not have the TMZ for her chemotherapy. Though I had listed Barbara's medications with the nurse in the UCC at noon, the order for them had not been placed till evening. By then, it was too late to obtain something as special as TMZ since it was locked up. So I went home to the Village, got the medication, and brought it to the nurse at SKMCC.
A further and more worrying complication had also arisen on the previous day when we learned from Dr. Omuro that the MRI taken on 21 Sept. revealed that the cavities (or ventricles) in the brain were filled with fluid.
[From Sara Solla: The ventricles are spaces inside the brain, filled with a fluid called cerebrospinal fluid or CSF. The ventricles connect with the space in the center of the spinal cord and with the membranes covering the brain (the meninges); the fluid can thus circulate around and through the brain and around the spinal cord. The CS fluid is mainly water with a little protein, sugar (glucose), some white blood cells and some hormones. A growing brain tumor can block the circulation of the fluid. The resulting increased pressure within the skull can cause symptoms. With some types of brain tumor, cancer cells can spread in the CSF, causing symptoms similar to meningitis - headaches and problems with sight and movement.]Once Barbara was in the hospital, Dr. Omuro proposed a spinal tap (or lumbar puncture) to remove excess fluid and thus alleviate some of the unpleasant symptoms Barbara was experiencing. The spinal tap took place a few days after Barbara's admission to the hospital. Now, on 3 Oct., there has not been a significant improvement in B's condition. If anything, it seems worse to me. She cannot walk, nor even stand on her own. Her speech has its ups and downs. She cannot finish a sentence, though she manages an occasional short phrase. She sleeps most of the time and eats very little. How much of all this is because of the tumor or a result of the treatment is hard to say. It certainly calls forth the old remark that the cure is worse than the disease, if it is a cure.
As I write this on Oct. 4, it has been decided to extend Barbara's treatment into a sixth week. After that, the plan is to put in a shunt that will drain the fluid into the body. The insertion is a standard procedure that will take an hour and is predicted to help with the walking. But Barbara's legs are very weak, in any case, compared to what they had been. The date for putting in the shunt has varied and we have been in some agitation over this uncertainty. In fact, I am not sanguine about all this but something has to be done about her condition and that is the only accepted procedure that has been proposed by the doctors. So, after her sixth week of radiation treatment Dr. Gutin will put in the shunt. That will be after Oct. 12 since there was no treatment on Labor day. A hiatus of three or four weeks is planned. In that period, there will be an attempt to put her in a rehabilitation center to help strengthen her for walking and other functions. So I pause abruptly here and will report in a while on the next developments.
