Ron passed away on July 10, 1998. These are his words:
Born August 2, 1931, so I am 66 at this writing.
Grew up in Buffalo, New York, both in the city and in suburbs (Kenmore).
Worked one summer at Republic Steel's blooming mill -- lots of dust. After
college, six years in the US Army with service in Germany and El Paso (lots of
dust), became a computer programmer. Retired from Hewlett-Packard in May, 1997.
I can remember some office space near bad smells -- possibly from printed
circuit facilities. Also, for a year or so, we were above a paint shop. I
especially remember that because of my reaction during an earthquake:
My neighbor said I turned pale. I was afraid the floor would give way and we
would fall into the paint shop. It did not.
From about 1972 to 1986 I fancied myself a runner. Spent lots of time running
on city streets, as well as in local parks, especially Almaden Quicksilver Park,
so named because it is on the site of a former quicksilver mine. Lots of dust,
some of it probably contaminated with cinnabar (mercury ore). Had to stop
running because of recurring back pain.
As a child, had many upper respiratory infections. Over the years, two bouts
of kidney stones (they passed). About 1985, had to lay off running for a while
because of valley fever (probably histoplasmosis). I attribute that disease to
inhaling dust from freeway construction projects through which I had to drive
for many months. Could also be from the dust on park trails.
In December, 1991, I was washing our kitchen floor. At one point I stretched
out with the mop and felt severe pain in my lower back. Well, I had back pain
before, and this must be just another incident. When the pain did not go away I
visited a chiropractor. The idea of the usual manipulations scared me, so we did
not do them after the first visit; mostly massage, as I remember.
Abdominal pain joined my sore back. A visit to substitute family doctor led
to a referral, but no definitive findings (take these pills and call if you
don't get better). At the time I was trying to be a good commuting citizen, but
the rough bus ride generated too much back and abdominal pain.
In May, 1992, x-rays by the family doctor revealed a dark area on L-2. He
sent me to a rheumatologist who ran a blood test that showed an abnormality. The
diagnosis was Monoclonal Gammopathy of Undetermined Significance (MGUS). I
couldn't even pronounce it, let alone understand it. This doctor then sent me to
my present hematologist/oncologist who, after further tests, pronounced Multiple
Myeloma. L-2 had partially collapsed. IgG at the time was 2640.
After radiation treatment to L-2, 20 treatments, 4000 rad total, I had 13
rounds of Melphalan/Prednisone (MP) between August, 1992 and September 1993.
Meanwhile, IgG went up to 3100, then down to 1450 at which time treatments were
discontinued. The radiation treatment seems to have fixed L-2. Only side effect
from MP was fatigue which increased through about the tenth day after start of
cycle. IgG then started to climbed and I noticed occasional rib pain plus right
shoulder pain. I could not lie on either side because of the pain. By January,
1995, IgG had risen to 3300. Radiation, 3600 cGy total, helped with the pain. (I
wish the radiation lab techs would be more artistic with the tattoos used to aim
the machine -- maybe ducks or bears, not just large dots.) We then went to VAD.
Initial treatment was in hospital, subsequent treatments were administered at
home using a portable pump which gave me complete mobility. Side effects:
fatigue and hair loss. Hair started to regrow almost immediately. In June we
discontinued the VAD and tried Interferon, 3 million units every other day for
three months. My IgG went from 2400 to 5500. Interferon was discontinued and VAD
resumed, through May, 1996. I again experienced hair loss, at the resumption of
VAD, and again at the last treatment. Hair has since grown in nicely, with
little waves in the back which I had never had before. Wife loves it. IgG got
down to about 2600. Doctor put me on monthly high dose Dexamethasone (40 mg
daily for four days). Primary side effect is extreme fatigue; my wife would add
grouchiness. We tried tapering, but for me, that just extended the period of
fatigue. I began to experience rib pain again, but in Autumn, 1995, Aredia was
approved and we started it immediately, 90 mg every four weeks. Rib pain
decreased to almost nothing. I can lie on either side. However, the rib and
shoulder pain make them selves known from time to time. Nothing severe, but it
is there. IgG, which for 18 months had bounced around between 2600 and 3500,
with one excursion to 4100, went to 4400 in August, 1997, and 4900 the next
month. I have just started MP (October 1, 1997).
After two blood clots I am taking Coumadin, 5 mg, probably permanently. The
first clot occurred in the Spring of 1993, deep venous thrombosis (DVT), right
leg. The second occurred in my left arm in February, 1996, and was associated
with the Groshong Catheter that had been inserted for VAD seventeen months or so
In the Fall of 1996 I was evaluated at Stanford for an autologous transplant.
My lungs gave the transplant team cause for concern -- they thought I would have
a great deal of trouble with a very real probability of not surviving. So the
decision to transplant or not was taken out of my hands by their rejection. I am