Greetings to all who follow
Greg’s blog, in which he recounts the many travails dealing with Multiple
Myeloma, first diagnosed in 2012. I (Barbara) am writing this update,
which he will proofread and edit, a reversal of our usual roles, but at the moment,
he does not have the energy to sum up what has happened since the last blog,
posted 5/19.
We did make it to our Cow
Island cabin in Lake Winnipesaukee over Memorial Day, accompanied by our son
Brian and two of his three boys. It was a major challenge for Greg to
negotiate the rough path up to the cabin using his versatile rollator, but he
accomplished it. Even though his movements were pretty restricted, it was still
wonderful to be able to spend time together in that special place.
Back home in the early hours
of May 31, he experienced difficulty breathing. The bedside oximeter gave
a blood oxygen reading of 70, dangerously low and thereby threatening damage to
vital organs. The local ER stabilized him before concluding that his was
a “complicated case” and shipped him off to the ER at Boston’s Beth Israel
hospital, where he has been receiving treatment. By this time, the mouth
sores he referenced back in the May 19 blog had become worse, severely
impacting his ability to eat. Nonetheless, they discharged him after 5
days and we gave having him at home a shot. But he just could not take in
food, and I feared he would perish from anorexia (a term a doctor subsequently
used as well.) After three days at home, the visiting nurse agreed that
the mouth/tongue sores alone merited a trip to the hospital, and he was
readmitted.
By this time, his
“constellation” of issues included these horrible and painful sores, constant
diarrhea, periodic cardiac arrhythmias, inability to breath deeply, night fevers
and sweats, continued weight loss, fatigue, painful swelling of the feet….you
name it, it was visited upon Greg in Biblical fashion. They have
continued their search for the source of infection that might be causing each
symptom, not knowing if they were separate issues or related.
Even now, they still do not
know what is at the bottom of everything, though they continue to search, test
and treat, infuse, etc, etc. Several weeks ago they tried another
discharge, but it only lasted a day-and-a-half before he spiked a dangerous
fever in the middle of the night, and we made another trip to the ER. He
has remained on the familiar hema-oncology floor (Feldberg 7) ever since, where
the wonderful staff of doctors, nurses and other caregivers know him well and
are familiar with his incredible will and desire to persevere. He sleeps a lot,
but when not fevered or fatigued by a treatment, he is sharp as ever.
Diversion becomes an issue, and many hours are spent playing FaceTime games
with various grandkids, and bridge via the Trickster app with other members of
the family. Multiple Myeloma, even in this advanced stage, has not
diminished his uncanny ability to come out the winner at most of these
encounters.
The latest number is just a direct
continuation of the previous 2.
The doctors now emphasize that there is a difference between the literature describing the efficacy of a particular drug, and an individual patient’s experience with it. As we well know, all drug trials have criteria the patient must meet in order to participate. They are looking for good data, so the participants tend to be younger, healthier, those who have not received as many different treatments as Greg has, or those whose disease has not progressed as far as his has. Therefore when the literature says, for example, that 30-50% of the people on the trial have some sort of response that lasted for 4-6 months before remission, they predict that Greg may not get as much benefit as described. Also, his Multiple Myeloma is aggressive and smart; with each subsequent treatment, it gets smarter and therefore figures out a way around the new treatment in a shorter amount of time. Every treatment of course carries with it potential side effects. Presently he may be a candidate for two remaining treatment options – one can have serious heart consequences, and the other produces cornea clouding in over 80% of those who receive it. And he may not be healthy enough to receive them safely. The appropriate path forward should be determined soon, but we have been in this limbo for a while now, as his various conditions juggle themselves around, requiring varying amounts of intervention to keep on track.
The doctors now emphasize that there is a difference between the literature describing the efficacy of a particular drug, and an individual patient’s experience with it. As we well know, all drug trials have criteria the patient must meet in order to participate. They are looking for good data, so the participants tend to be younger, healthier, those who have not received as many different treatments as Greg has, or those whose disease has not progressed as far as his has. Therefore when the literature says, for example, that 30-50% of the people on the trial have some sort of response that lasted for 4-6 months before remission, they predict that Greg may not get as much benefit as described. Also, his Multiple Myeloma is aggressive and smart; with each subsequent treatment, it gets smarter and therefore figures out a way around the new treatment in a shorter amount of time. Every treatment of course carries with it potential side effects. Presently he may be a candidate for two remaining treatment options – one can have serious heart consequences, and the other produces cornea clouding in over 80% of those who receive it. And he may not be healthy enough to receive them safely. The appropriate path forward should be determined soon, but we have been in this limbo for a while now, as his various conditions juggle themselves around, requiring varying amounts of intervention to keep on track.
We were looking forward to a
discharge home, where we now have oxygen generation units on both floors, our
stair chair, and other accommodations. But the past two attempts have
been foiled by the continuation of fevers, which may in fact be the result of
the Myeloma itself, and not caused by some elusive infection.
Greg remains committed to
voting in November, and to participating as long as he can in the affordable
housing projects in Stow (via zoom) that he has championed for so many
years. We hope he can stabilize sufficiently, and that we find adequate
help, that he can return home safely without a boomerang trip back to the
hospital. Fingers crossed.
To have all this happening
against the background of a pandemic, the dismantling of our country before our
eyes, the disruption of the economy, the interruption of all assumptions….make
it feel like a cosmic assault on the world we knew, on all fronts.
We remain very grateful for
the support of our friends and especially our sons and their wives. To
see them and their children enjoy the camp on Cow Island is truly wonderful and
feels like a legacy that reflects both of our values, as well as many years of
our life together.
The Vermont family.
Barbara and Greg
