July 2001

My story begins back in March, 1992.

Life was pretty normal for my wife and me back then. We both had full-time jobs and enjoyed our weekends off. We were both healthy with no previous illnesses other than a back injury that I had way back when.

I caught a cold around the beginning of March, in 1992 and it would not go away. Of course, being a stubborn man, I didn't think of going to the Doctor, even though my wife had wanted me to because it would not clear up. I had previously started a diet and exercise program in February, and I figured the cold was not getting any better because I was not eating as I was normally accustomed to.

Finally, on April 2, I went to a walk-in clinic because I still had this darn cold. The Dr. gave me an antibiotic and sent me on my way. Sure enough, the cold started to clear up and I was feeling much better after about a week, although I was always very tired. My wife was starting to get annoyed with me because all I ever wanted to do was sleep. I would sleep for 12 - 14 hours a night and then would want to go back to bed 8 - 10 hours later, then sleep again for another 12 -14 hours (this continued until I was admitted to the hospital).

I went through all kinds of symptoms over the next 6 weeks. I had night sweats, waking up all the time with a soaking wet bed. We put this down to the cold and the diet and exercise program. I had bruising on my lower legs and we put this down to my job. I was an auto Detailer and was in and out of cars all day so I figured I just kept bumping into the door frames on the vehicles. I had severe headaches almost every day and we put that down to the fact that I am supposed to wear glasses and I never do, so my wife figured that I was getting headaches because of this. I was losing weight rapidly, but of course, we put that down to my diet and exercise program. I was eating very healthy meals, but only two a day, and I was playing racquetball 4 days a week for about 3 hours at a time. The final symptom, which actually sent me to my family Dr., was that I got 3 blood blisters on my tongue. They hurt like he.... and I could hardly talk. When I got up on the morning of Tuesday, May 19 for work, I told my wife to make a Dr.'s appointment for me that evening after work. When she asked me why, I stuck out my tongue and showed her the blisters. I went to the Dr. that day, after work, around 5 p.m.. He prescribed me something to take the blood blisters away and sent me for a blood test. Because of the time, our labs were closed so I had to wait until Wed. morning to go get my test done. Boy, was that an experience! First they could hardly get a full tube, then when I got home, I was so weak, I passed out in the hall outside my bedroom. I did not like needles and when I looked at this huge bump on my arm where they took the blood, it did me in. I was out for a while, then when I came to, I crawled into my room and got into bed, which is where I stayed until my wife got home from work. When Sue, my wife, checked the answering machine for messages, our Dr. had left a message for me to check myself in to the Rockyview Hospital for further testing. He didn't say why, just that he was a little concerned about my blood count.

When we got to the Hospital, my admitting papers were there waiting for me, which was unusual; you usually had to fill out all sorts of papers and wait forever but they were rushing me through like I was the Pope! Sue took my papers and unbeknownst to me, she saw that they were checking me for symptoms of either severe anemia or Acute Myelogenous Leukemia (A.M.L.). She just about freaked, but she knew she couldn't say anything because if I had known, there would be no way I would stay in that hospital, or go through any treatment, even if it meant the worst.

We were told a specialist would be in to see me sometime that evening. My nephew Ken drove us to the hospital and the three of us sat there and waited until 11 p.m., then we were told that the Dr. got too busy and wouldn't be able to make it by that night.

The next day, Sue worked until 1 p.m. then came up to the hospital. She had contacted my family Dr. who proceeded to tell her that he thought it was just anemia, but they didn't want to take any chances, not to worry. Well, that was not the case. About 2:30 p.m., Dr. Thael, an Oncologist, came in to see us. I will never forget that day; he sat on the window ledge and told us that the first thing he was going to do was to transfer me to the Calgary General Hospital. I didn't want to go there because we had heard some horror stories about the Hospital but when I voiced my concern, he said, "That's were I treat all my patients with Leukemia." Talk about a shock to the system! We could not believe we were hearing the "C" word. It was unbelievable. They transferred me by Ambulance and I was settled in my room at the Calgary General Hospital by 4:30 p.m..

Everything started happening so fast; they told me I was scheduled for surgery to have a central line surgically inserted into my chest, but I need a hemoglobin and platelet transfusion before I could have the surgery. They tried to explain to me the process for treatment and just exactly what was happening with my bone marrow, but I wanted no part of it. I told them to "Hold on a minute, I'm going for a smoke!" When I came back up they started the transfusions almost immediately. Boy, did they make me tired. I needed benadryl, Demerol and Steroids to control the ìRidersî, which is like a seizure, or a very cold chill, where you can't stop shaking, or as I told my wife, I was so cold, it felt like I was standing outside with no clothes on and it was 40 below.

They took me down for surgery after my transfusions were completed, at about 6 p.m. I was very groggy after the surgery but my wife told me they started the chemotherapy drug almost immediately after I came back to my room, I believe it was around 9 p.m.. The next morning, everything was explained to me and I was told that I would be going through 7 days of chemotherapy, a drug called Cytarabine, 24 hours a day, then 3 days of a different chemo drug, called Mitoxantrone. I remember being told of the odds and telling the nurses and Doctors that I was going to beat this. I was in the Hospital from May 20th until June 28th, 1992. During this time, I endured continual blood transfusions, and alot of uncomfortable side effects, i.e. infections, mouth sores, genital herpes, all of which was caused by the very low white cell count, which happens when you are on Chemotherapy drugs.

I remember the day that I lost my hair. I had always had very nice long naturally wavy hair that I took alot of pride in and I kept it styled nicely. It had started to matte at the back and my wife knew it was only a matter of time before I would wake up to find it all on my pillow. She suggested that we cut the back of it off so that it would be less of a blow to me. During one of my regular visits to the shower, I lost a great amount of hair. At first it was a shock, but then I thought, "Even though I am losing my hair, it could be worse. There are alot of people out there, losing their limbs, and their lives."

The one very bad incident I recall like it happened yesterday, was my central line got infected and they had to remove it. Well, they sent in a "surgeon" who came into my room , put his foot against the edge of the bed and yanked it right out of my chest, which we found out later was the absolute wrong way to do it. It was supposed to be surgically removed, as it was inserted into the main artery to the heart. I thought he was pulling my whole insides out. It hurt so bad, I couldn't breathe. The nurse and my wife just couldn't believe this. After the Doctor left, the nurse told us she had never seen a central line be removed quite in that manner before. We had inquired about it before he started, but he said it was no problem, he removed all of them this way. A few years later, when I had another central line removed, it was done properly, through day surgery, and the surgeon I had that time could not believe that my first line was removed in that manner. He was horrified.

After I was released from the hospital at the end of June, life went on. I was conditionally released only as long as I could afford the drug I had to be on for all the infections that I had experienced. The medication cost $259.00 for two weeks supply and I required 2 refills. My employer was very generous and he told my wife and I that they would cover any prescriptions that I required, all I had to do was bring in the receipts and he would give me a cheque. I was also told that my leukemia was treated in three sets of chemotherapy. The next set was scheduled for September, 1992 and the third was scheduled for January, 1993.

I was admitted to the hospital on September 8th for my second session of chemo.

This treatment was shorter, only 7 days in total, and it was not as harsh as the first chemotherapy session. My stay consisted of a lot of day passes, some of which the nurses never knew about. He would tell them that he was going for a smoke and then he was going to go down to the garden room, a nice garden like atmosphere in the hospital for staff and patients to use - but when he got outside, he quickly got into his car, which we had left at the hospital because of his normal day passes, and he would drive home to visit with his dog, Comyt. After about three hours, he would return to the hospital. Nobody ever knew this, not even my wife, until I told her after my third session in January was completed.

Both my second and my third sessions were very standard. I would have to say that I was incredibly healthy through them with no adverse side effects or no infections and I felt amazingly well. Everything was going so smooth, that my Doctor was optimistic that it would never return. I was registered with the bone marrow registry "just in case" as I did not have a matching family donor, but again, my Doctor did not think we would ever need to worry about it. We were told that after two years, if the leukemia did not return we would be relatively safe in assuming that I was in total remission, but little did we know that as we were celebrating my two-year anniversary, a leukemic tumor was, at that moment, developing in my arm.

I started to play racquetball again, in the early part of 1994. I had my strength back, was working full time again, and felt really good. One night, after playing ball, I was sitting at home and I had an extremely painful feeling go through from my shoulder right down to my fingertips. I broke out in a cold sweat and my wife phoned 911. She thought I was having a heart attack. After spending quite a few hours in the emergency ward, the pain passed and the Dr. released me, telling me to go to my family Dr. and get it checked out. We thought maybe I had pinched a nerve or pulled a muscle playing racquetball, so my Dr. sent me for physiotherapy. It seemed to help for the first few treatments, but after that it didn't help, it only seemed to get worse. The Dr. stopped the physio, and scheduled a cat scan for me in July. The scan showed nothing more than the "thickening" of the medial nerve so he then scheduled an appointment with a Neurosurgeon and an MRI scan. I had the MRI scan done in early November at which time Dr. Long, the Neurosurgeon, told me that she thought it was leukemia related and she reported this to Dr. Thael. He told her it was impossible, leukemia does not surface in the form of a tumor, it is a blood cancer and runs through the blood and marrow. He scheduled a bone marrow test just to prove his point. Of course, the bone marrow test came back clean and he thought I was safe. I was admitted for day surgery on November 9 for a biopsy on my arm. It was only supposed to be day surgery but they did indeed find that the tumor was leukemia and they kept me overnight. I was told then that I would need a bone marrow transplant but I had to go through another session of chemotherapy first. Because I did not have a donor, I would require an autologous transplant. This procedure was done by me having my good stem cells removed from my bone marrow, through an aphoriesis machine. They inserted a tube in my neck and for 4 days, I had to go to the hospital and get connected to this machine for about 10 hours while they "spun" my cells. After they collected enough stem cells to transplant back into me, I was free to go. I went through all kinds of tests before my transplant. It required me to be in very good health, because the chemotherapy drug was considered high-dose treatment and I was told that quite often, it's difficult to survive the chemo, because it almost kills you before it can cure you. They needed to do a spinal tap on me. I would not allow it because I had heard horror stories about this test and I was not going to go through that. One of my nurses scheduled a test for me a few days later. She told me that I was going for a test called a lumbar puncture, which I had no clue what it was. Little did I know that it was just a fancy term for a spinal tap. Later, she told me that I had gone through the spinal tap and I could not believe. The test was nowhere near as painful as a bone marrow test is.

On January 30th, 1995, I was admitted to the Tom Baker Cancer Center for the start of my treatment for my bone marrow transplant. I started the high dose chemotherapy drug on the 31st of January. This treatment consisted of two days of liquid radiation (chemo) and four days of pills; they consisted of 146 pills a day.

During this time I was given a drug called anti-nausea, to control any stomach upset. I was allowed to go home on day passes as long as I wasn't sick to my stomach. On the last day of chemo, while we were at home I started getting extremely ill. I called a neighbor who was kind enough to drive us back to the hospital so I could get the vomiting to stop.

February 6th was the day for my transplant. The procedure went very smoothly. It consisted of what seemed like a blood transfusion, except the fluid had to be kept cold right up until they were ready to transfuse. It was three bags and took about one hour to complete. Little did we know this was the easy part.

I became very ill during this the period of February 7th through March 1st. I got mouth sores, I lost the skin on my tongue and I couldn't talk or eat. I lost control of my bowels and I had to wear diapers. I developed pneumonia. One of the nurses was assigned to my room on a 24-hour basis to watch me as I was so ill. During this time I was sleeping alot and I could not visit, even if I wanted to. I do remember February 19th though. This was my sickest day and my sister and brother-in-law had come to visit. My wife was so upset, I had almost died twice that day to the pneumonia. They stayed until after 10 p.m. when my fever finally broke and I was finally out of danger. Although the next two weeks were very hard, I slowly started improving and I was finally released on March 5th. I was to return to the hospital every few days for a blood test and I usually required a blood transfusion. After about six months, Dr. Thael told me that my transplant was considered to be a failure because I still required frequent blood transfusions. I was told that I would probably not survive more than another six months.

Well, I guess I fooled them, again. After about a year, I started taking a natural herb called "Cats Claw". I had heard about this from one of my wife's co-workers who had a family member diagnosed in Nicaragua with leukemia. Treatment in Nicaragua was too expensive, so they tried the natural process. We went to the health food store to purchase this herb and I took it for about six months. I was told that it was to boost your red blood cell count. Sure enough, my blood started improving and soon I was only getting transfusions about once a month as compared to once a week. This continued for about two more years, with me going once a month for transfusions. I did some research on the Internet and I was referred to a Doctor in England. I emailed him and told him my story. He suggested that I try a herb called "Astragalus". Again, we went to the health food store and picked up this herb. I took it for about 5 or 6 months and sure enough, my red blood count started improving again. I am happy to say that as of July, 1999, I now no longer require any more blood transfusions. Not bad for someone who was given six months to live.

It has been almost six and a half years since my transplant. I feel pretty good and I have returned for the most part to my normal lifestyle. I do my share of traveling, I am a big "Elvis" fan and my dream is to make it to Memphis soon to see Graceland.

I am sharing this story for all who have a hard time believing that this can be beat!! Feel free to contact me if you wish to tell me your story or want to know anything else. My story is condensed and I could tell alot more. but I think it would be like writing a novel.

To all of you, my best,

Randy (rscaulder@home.com)