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Bernard Pilcher
01.01.93

Ontario, Canada; bernard.pilcher@sympatico.ca

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 for.

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 using a 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 "I 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 Feb. 1999.

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.

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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.


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