When I last reported on Barbara's condition, I was guardedly
optimistic because her walking and talking had noticeably
improved. It is true though, that I did not mention that she was
still plagued by an intense fatigue that kept her sleeping throughout
much of the day. That feature of her condition has worsened since
mid-January. (I write this on Feb. 3-4 between episodes of various sorts.) Even worse is that Barbara can no longer stand up on her own, let alone walk. And she is very uncommunicative. This may cause me to give up on or postpone the project of moving her home that has been our goal for some time. But, so far, I am still trying to keep moving in that direction with enormous help from Mike S. Also Alan W. has now begun to lend some assistance, especially in
peripheral legal matters.
Today we were told that Barbara could no longer have physical
therapy because the medicare coverage has run out. Moreover
there is no mechanism that would allow me to pay for this myself. And today, we could not rouse her for speech therapy. Her smiles,
which kept the spirits of everyone who saw her uplifted have
become infrequent and visitors are coming less often.
The difficulty of her not being able to stand led to her having a
fall while she was being changed into her nightgown a few nights
ago. The fault apparently was the inexperience of the caregiver
who should have known that Barbara should have been seated for this operation. The experience was made worse by the uncontrolled behavior of the caregiver after the fall. Since Barbara's decline had begun before the accident, who knows what its contribution was. I share some of the fault since I should have realized that the person in question was not sufficiently experienced in these matters of caregiving and I should have controlled her better in the aftermath. She was a replacement for someone else who seemed even less in touch with reality. I had prepared my case for an improvement in the caregiving on that day but the person in charge did not show up and
I had no way to present my case.
Another decision I have had to take is that, despite my misgivings about
the demeanor of our oncologist, I have concluded that Barbara needs
medical attention at that level. As he knows her case best, I have made
an appointment to have an MRI and an evaluation by this oncologist on
Feb. 8. But I think there may be other medical issues.
Barbara has been having breathing problems. Is this connected to
the tumor? I have been trying to catch one of the two visiting doctors to ask for an opinion. But they are rapidly moving targets.
There is a swelling around her throat. Is that goiter? Her hands
and feet have been twitching and I was worried that this might be
a form of mini-seizure. Certainly the amplitudes of these motions
went down this morning after Barbara had her anti-seizure medication. Barbara now sleeps fairly continuously, opening her
eyes occasionally but not speaking.
As I mentioned in a previous note, I was planning to contact Dr.
Grewall of Great Neck at the suggestion of Dr. Hsu, Louis T.'s
high school classmate whose advice has been invaluable. It
turns out that Dr. Hsu had asked Dr. Grewall to contact me. Our letters crossed but we finally made phone contact. Dr. Grewall is
in favor of trying Avastin, a drug that inhibits the formation of blood
vessels that feed tumors. In the present circumstances, I feel this
approach is worth considering. But 1.5 hours of travel each way
for treatment is too much to submit Barbara to. So Dr. Grewall recommended Dr. Pannullo at Cornell Medical Center and I have
written her. There has been no response, so I will try to reach her
by phone. As we enter the weekend, there is great uncertainty about
our situation.
The Barbara of January has left us for now and who knows if we
shall see her again. But, as the bard wrote, "Love is not love that
alters when it alteration finds."
