Ontario, Canada; email@example.com
2-14-1938 / Class of '93 / Last Update: 8/01
I was born in the town of Gillingham, Kent, England on Feb. 14th, 1938. Being as
my father was in the British Navy we seemed to not stay in one place very long.
As a baby, my first move was to Malta where my father was based, it was not too
long before Germany realized that it was important for the Navy to be there and started to bomb the docks, so all non-military were shipped out.
My first memory as a child was living in a London district with my Mother while
my elder brother and sister were sent to the country side for safety, we were
all re-united some time later, finally settling in a small village in the Essex
countryside. There was to my knowledge some kind of nuclear
establishment outside a town some 20 miles from us but I am not sure what it was
On leaving school, I worked on a farm for about 2 years and was around some crop
spraying. At age 18 I was called upon to serve in the armed forces. After
training I was sent to Hohne garrison in Germany attached to a tank regiment,
whose base was a short distance away from the world renowned Belsen concentration
campsite which I did visit -- an eerie experience to say the least, as even in
mid-summer there was not a sight or sound of any birds or any kind of wildlife.
Whether or not there was any radiation in the base area, who knows... only
"Government" I guess.
In 1974, we came to Canada in the hopes of better opportunities for our children. I worked for Chrysler for five years at their casting plant which
placed me behind furnaces holding molten Aluminum at some 1200 degrees. After
that, I worked for myself in the home improvement business. In the summer of '92,
I started getting severe pains in my lower back ribs and shoulders, and, when
manually-operated bending machine to bend metal moldings, pain in my forearms.
I went to see my Dr. with these symptoms and was put on anti-inflammatory pills
and pain killers --Tendonitis was the term I think he used. No relief from the
treatment, then in December just before Xmas I found a lump on the top of my
sternum. I went back to my Dr. after the holidays. His response was "I do
not know what it is, but I do not think it is anything to worry about". More pain killers etc.
Things got worse, so I went back. This time X-Rays were
taken. Result: "soft tissue, nothing to worry about".
Finally, when there was no improvement, the Dr. sent me to a surgeon who said the same thing as my
Dr. but also added "if you wish I can do a Biopsy", to which I said
think that would be a good thing as I am tired of not getting results." The
result was a malignant tumor. I was sent to an Onc. who straight away did a
B.M.B. and soon after came back with a Plasmscytoma and arranged for 15 sessions
of radiation. It goes without saying that we did, of course, find ourselves a
new family Dr. My Onc said after the radiation that this is curable, so if you
remain in remission for 5 years we can say goodbye.
This wasn't to be: In 18 months I had severe pains in my ribs again another
B.M.B confirmed relapse Jan. 95. My Onc promptly arranged sessions of V.A.D.
once a month, then before the first one, decided to send me to see a Myeloma
specialist, as he said that I was strong and healthy other than the Myeloma and
that I might be accepted for a A.B.M.T. I was offered a clinical trials
transplant. V.A.D went ahead as planned -- no great complications -- until after the
third session, I had been home for 1 day and was taking a bath when I noticed my
left arm and left side of my chest swelling and turning slightly blue. Back to
E.R. After dye injection X-Rays, it was confirmed blood clots possibly caused by
the Hickman line. In hospital for another week on a Heparin drip and then on
Coumadin for 6 months until the Hickman line was removed after the transplant.
After finishing V.A.D I was finally prepared for the transplant with high
dose Cyclophosphamide and Prednisone for 4 days, 2 weeks later Stem cell
collection, and 2 weeks later high dose Busulfan and Cyclophosphamide for 6 days.
Then they graciously gave me the day off to rest for the transplant. I spent a
total of 6 weeks in the hospital and was released with a Plasma cell count of
less than 1%, in full remission. The only problem was dehydration because of lack
of retaining fluids, so I was on a saline drip at home for one week. Everything
went fine for a year then BANG!: Shingles, hospital for a week, then on
antibiotic drip at home.
Everything has been good since then with no pills of any kind. I have never
asked for figures as all that interests me is the bottom line, but at my 3 year
post transplant check up they said that I was somewhat of a success story. My
plasma cells were still less than 5% HB148. Lkc 5.7 PLT 175, and whatever it
means "No morphological evidence of Myeloma." Three and a half year check up in
February 2001: It is now
almost 8 years since I was first diagnosed.
This last few months in particular,
I have pondered what is our purpose in life and what destinies await us all. My
thoughts go back to childhood, and some of the things that happened to me that
could easily have had more of an impact on my longevity. The first incident that
I can recollect was when I was 5-7
years old, we were living in the Essex countryside at the time and all the kids
a certain distance from school were picked up by Taxi. One morning I was on the
wrong side of the road for picking up which meant that the car would go right by
and pick me up on the way back, so in what was likely panic at the thought of
having to wait for that to happen, I ran across thinking that I had time to get
over, but the car was going very fast and by the grace of god only clipped my
foot as I ran in front of it, throwing me through the air, landing miraculously
in a soft ditch resulting in my
just being shaken up with a few minor bruises.
A few years later I was taking a
huge cart horse to the Blacksmith for new shoes. This horse was as big as the
Budweiser horses used for commercials. I was riding bareback with a mere piece
of string tied to its bit for control, he was feeling a little sprightly that
morning and decided to break into a gentle trot making it hard for me to stay on
his back. He would not heed my cry of stop, so in panic I jumped from his back
being narrowly missed by his huge hooves. After he realized that I had left his
back, he turned and came back to where I was laying in the street and sniffed me
all over, as if checking me out for life.
The next incident was around 10
years old. I used to dream and sleep walk, and that particular night I must have
dreamt about what I had been doing that day and took a leap down the stairs and
was found a while later by my Mother in a huge pool of blood from a huge gash in
my head. If she had not awoke for whatever reason (!!!), who knows what the
outcome might have been?
The last incident apart from
Multiple Myeloma was, we had been on holiday in Florida some 20 years ago and
were taking off in a 747 from Miami airport, there was a terrific thunderstorm
going on at the time but we took off regardless. We had hardly got airborne when
suddenly the aircraft started dropping vertically all were screaming very loudly,
but for some reason I felt very calm, it was as if I knew that this was not our
time to go. A few long
seconds later, my faith was confirmed: we straightened up and continued
on to Toronto with no further problems.
So what is my destiny? I have been battling MM for 8 years now and have just
had my 5-1/2 year post-transplant check up, all my counts were that of a normal
person, and my 24 hour urine
collection showed 0.02 % protein where anything under 0.03 is too small to take
any measurement. So all is still well. Perhaps it had something to do with what
drugs they gave me during my clinical trials, my transplant, something different
perhaps from most. Maybe this is my purpose in life. Time will tell as to what
that may be, but with determination and a lot of faith I intend to battle on to
see my grandchildren grow, something when first diagnosed I did not think would
happen. I have learned a lot since then with the help of all on the MM Foundation
mailing list and some excellent Oncologists.
Next check up is in mid-May 2001.
Update as of 31st August 2001: My May check went very well with all my counts still as that of a normal person, although there was a slight rise in my Igg count but only minimal a few decimal points, the only thing that appears to be ongoing is the result of the Bone Density which revealed there is a increase in bone thinning in the leg and lower back area, I have to see an Internal Medicine specialist for that in mid September, if there is nothing to report from that my next check up is in mid February 2002.
Any communication is welcome: long term survivors who might want to compare
notes, pre-transplant queries in fact any one interested in the transplant and
Myeloma. Good luck to anyone reading this who is about to have a transplant --
without mine, my prognosis was less than what I have survived.