04/2003 ~ Chemo Therapy Diaries

Friday, April 04, 2003

Lump mass removed from neck by Dr. Jon

Tuesday, April 08, 2003

Dr. Jon called me on the phone while I was at work, and informed me that the pathology report was positive for level 1 non-Hodgkin’s Lymphoma.

Friday, April 11, 2003

I had my first appointment with Dr. Wendy. She did a bone marrow biopsy and ordered a CAT scan.

Tuesday, April 15, 2003

First Chemo / Rituxan / Prednisone treatment. No side effects, other than being drowsy from the Benadryl they gave me. Only took 3.5 hours, instead of the 5 – 6 they said it might take.

Wednesday, April 16, 2003

I had a CAT scan done at the hospital.

Thursday, April 17, 2003

Still no side effects. I played three games of racquetball and felt fine. Felt a little tired and achy. I was only able to play two games of racquetball before getting wiped out. It turned out that I had picked up the flu from Ann. Ached all over, tired, upset stomach, etc.

Friday, April 18, 2003

I felt really bad in the morning. Achy all over, slight stomach upset, and tired. I wanted to go home from work, but had too much work that needed to be done. Felt better in the afternoon.

Saturday, April 19, 2003

I still felt bad. Achy all over, slight stomach upset, and tired. I ended up working from home for 6 hours.

Sunday, April 20, 2003

I felt a little better, but not much. I was able to attend Church. We had all the kids up for Easter dinner. I got tired, but it wasn’t bad.

Monday, April 21, 2003

I felt great. The flu was gone, and I felt really good. I noticed a little tingling on the tips of my thumbs and index fingers. My throat felt painful – not like a sore throat, but rather how it might feel after a sore throat. Hurt a little to swallow. Got results back from the CAT scan – all clear. Bone marrow biopsy was also clear. No traces of the cancer spreading.

Tuesday, April 22, 2003

I had a hard time sleeping. I was up at 2:00 am and was working on the computer. I got a call at 3:00 am from a user in Johannesburg. They had some email problems that I had to fix. I ended up going into work for the whole day. I called Dr. Wendyr's office and told them about my fingers and throat. I went in to the office for blood work. The results were good. I had an appointment with Dr. Mike to talk about a natural holistic diet. I practiced racquetball and played a doubles game. I was tired, but I think it was from being up since 2:00 am.

Wednesday, April 23, 2003

Nothing to report.

Thursday, April 24, 2003

I had hard time sleeping again. I took some Tylenol PM to sleep. I didn’t get to sleep until after 3:30 am. I felt tired in the morning, but I felt better as the day went on. I felt bloated, but think it was from my high dosages of Prednisone. Today is the last day of the high dosage. I still have the tingling in my fingers and my throat is still slightly sore. I got tired as the day wore on. But after 4:00 PM I felt better. Practiced racquetball and had a lesson. Played couple of short games afterwards. Got a call from work and had to come back in. Didn’t get home until after 2:00 am.

Friday, April 25, 2003

Tired from being up so late. More problems at work. Finally got them fixed. Upset stomach – feels empty, even after eating. Pills didn’t take mild pain away this time, like they have before. Fingers feeling tingly further down, especially index finger and thumb.

Saturday, April 26, 2003

Felt pretty good. Did some work in the yard, repairing sprinklers and getting them ready for summer. First sign of hemorrhoids. Noticed that bruises on my arm and hand are lasting a long time.

Sunday, April 27, 2003

Tired in the morning. Felt better in afternoon. Had to work on a major crisis at work. Hair began falling out. I could pull out clumps at a time. Had our neighbor Stacey cut it real short.

Monday, April 28, 2003

Major crisis at work. Felt pretty good in general.

Tuesday, April 29, 2003

Shaved my head. Short hairs were falling on the back of my neck and collar and it was really irritating. Developed a little sore on my lip. Lips always dry. Mouth is dry sometimes, but not too bad.

Wednesday, April 30, 2003

Felling good. Did a little yard work. Felt normal. Crisis at work is over.

Thursday, May 01, 2003

Felt really good. Played three games of racquetball, and wasn’t as tired as I have been before. Mouth starting to get more dry.

Friday, May 02, 2003

Still feeling good. Got some lip balm which helps a lot.

Saturday, May 03, 2003

Sunday, May 04, 2003

Facial hair starting to fall out. It was getting all over me, and down my neck, so I shaved off the beard.

Monday, May 05, 2003

Tuesday, May 06, 2003

Wednesday, May 07, 2003

Second Chemo treatment. Took 5.5 hours this time. Different nurse, and the drips are manually controlled. The Benedryl made me tired again. Came home and slept most of the day.

Thursday, May 08, 2003

Played racquetball with Scott; more of a practice than a real game. Didn’t sleep much – if any – at all. Too much sleep during the day.

Friday, May 09, 2003

Played racquetball – cutthroat. Didn’t do too bad, but lost.

Saturday, May 10, 2003

Food tastes really different. Even water tastes different. Even more so than before. Noticing a little difference in the my fingers. Still feel funny, but not quite as much so.

Sunday, May 11, 2003

Hard time sleeping.

Monday, May 12, 2003

Played racquetball with Deanna – got a little winded. Starting to notice a lack on energy.

Tuesday, May 13, 2003

Played racquetball before Deanna’s lesson from the club instructor. Got really tired. Hard time catching my breath. Only lasted 10 minutes. Had a runny nose.

Wednesday, May 14, 2003

Starting to get a cold. More tired, probably due to cold.

Thursday, May 15, 2003

Tried to come home early, but ended up working late. Started couching, really bad. Had to sleep in other room so I wouldn’t keep Ann awake. Took Tussionex (cough syrup), and Loratab.

Friday, May 16, 2003

Worked from home. Worked half hour, then slept half hour. Worked, then slept, etc. Went in to work later, but felt really bad. Took Tussionex and Loratab in order to sleep. Deanna said I was wheezing all night.

Saturday, May 17, 2003

Coughing really bad in the morning. Went to emergency room. Said I may have pneumonia, but because my white blood count was so low, it wouldn’t show up on x-ray. Started me on anti-biotic.

Sunday, May 18, 2003

Stayed home and slept most of the day.

Monday, May 19, 2003

Went to work. Tired, but felt better than Saturday or Sunday.

Tuesday, May 20, 2003

Hard time sleeping. Still coughing. Take Tussionex and Tylenol at bedtime.

Wednesday, May 21, 2003

Same.

Thursday, May 22, 2003

Still tired, but had to work till 11:00 pm.

Friday, May 23, 2003

Tired, and coughing. Boss sent me home early (9:00 pm) because I was coughing so much.

Saturday, May 24, 2003

Felt pretty good. Went to work for a little bit then shopping. Worked in the yard a little.

Sunday, May 25, 2003

Felt good until around 2:00 pm. Then I got real tired. Had to lay down and take a nap. No energy.

Monday, May 26, 2003

Worked in the yard in the morning. Got real, real tired. Had to quit and come in and take a 2 hr. nap at about 1:00 pm. Had to take another at about 6:30 pm. Just no energy. My foot hurts. I think it’s Gout. It comes and goes. If it continues I usually take an extra Allopurinol.

Tuesday, May 27, 2003

Foot hurts more now. Swollen. Worst pain ever during the night. Had to crawl to get some pain pills, but they didn’t take all the pain away. Foot was swollen, red, and hot on the top of my foot.

Wednesday, May 28, 2003

Third Chemo treatment. Only had 25 MG of Benadryl instead of 50. Much better. Didn’t get as tired. Dr. Wendy looked at my foot and ordered an x-ray. She said that the prednisone should help. After the treatment my foot felt much better. I can actually put weight on it.

Thursday, May 29, 2003

Pain in foot was worse in the morning. Had to use crutches. It seems that the prednisone didn’t help much. But later on in the day I was able to hobble around without them, but it was still sore. Worked on the trailer and picked up some trees with Troy.

Friday, May 30, 2003

Pain in foot even more painful this morning. Cancelled campout with Trevor and Jordan. Called Dr. Richard. He said he didn’t think it could be gout because I have been taking Allopurinol. He said I should get my foot x-rayed, so I did. It was not broken. Picked up herbal remedy for Gout – Tart Cherry Concentrate. Tried some. It seemed to work in a couple of hours. Had Dr. L call in an order for anti-inflammatory in case the Cherry medicine didn’t work. Started taking Coral Calcium for the cancer. Supposed to lower the ph level and prevent and help cure cancer. Skeptical, but I’ll try it.

Saturday, May 31, 2003

Pain in foot worse in the morning again. Prednisone, Allopurinol, and Cherry medicine has not helped. Still managed to hobble out (with crutch), and help kids pick weeds. Picked up Vioxx from Drug Store because pain was not going away. Took Cherry medicine again also. Pain again felt better in the late afternoon evening. Foot still sore, but I could hobble on it.

Sunday, June 01, 2003

Pain again in the morning. Crutches again for about two hours, then I could hobble. But later in the day, I could put my shoes on and it wasn’t too bad. The pain has moved from the top to the side, and it isn’t swollen any more.

Monday, June 02, 2003

Relatively little pain in my foot – especially for a morning. I think I’ve finally turned the corner. No effects from the Chemo, other than my hair, finger tips, and taste. But my finger tips are gradually getting the feeling back, or rather the tingling is going away – very gradually.

Tuesday, June 03, 2003

Foot was worse this morning. Still not bad, but worse than yesterday. Took both Cherry Juice and Vioxx.

Wednesday, June 04, 2003

No pain in my foot at all. Back to normal. Only took Vioxx. No other problems. Feel good. Catching up with work at work, and working in the yard when I come home.

Thursday, June 05, 2003

Same as yesterday. Cutting down on red meat in diet. Trying to eat more salads and yogurt.

Friday, June 06, 2003

No problems. Feeling normal.

Saturday, June 07, 2003

Got tired doing little things in the yard. Not able to do as much, as fast as I would like to have done.

Sunday, June 08, 2003

Got headache and had to lay down. Felt worn out.

Monday, June 09, 2003

11 Year Anniversary of Kidney transplant! Went to work, even though I felt tired. Was going to leave at 3:00, but stayed till 5:00.

Tuesday, June 10, 2003

After work I emptied the trailer at the dump. Completely wore me out. Head felt like I was standing on it. When I would bend over, my eye hurt – like when you eat something cold too fast and like when you got water up your nose – both at the same time. Came home from the dump and slept for two hours.

Wednesday, June 11, 2003

Had my blood work done. WBC was 1.9, RBC was 3.29, and HCT was 30.9. Got a Neupogen shot for the WBC. Went to work, but just felt very, very tired.

Thursday, June 12, 2003

Feeling better. Had another Neupogen shot today.

Friday, June 13, 2003

Had another Neupgen shot. Feeling OK, just tired and can never get rid of this cold.

Saturday, June 14, 2003

Went to the hospital for another Neupogen shot. Felt pretty good. Had neighbors come and help take down the old fence to get ready for the new fence. They also help widen one of the paths on the hill in the back yard. I was able to help a little, but got tired fast.

Sunday, June 15, 2003

Relaxed day. Felt OK, but then I wasn’t doing anything remotely physical.

Monday, June 16, 2003

Felt good. Best I have in a long time. Trevor came over after work and we put gravel down on the path in the back.

Tuesday, June 17, 2003

Fourth and last chemo treatment. My WBC was at 20, which really surprised Dr. Wendy. She said that I really did well on the Neupogen. She was expecting the WBC to go up, but not that much. Last time I had Neupalast. It was a long lasting shot for 10 days. The Neupgen is the same thing, only smaller doses that you are supposed to take for 10 days. The problem was that most patients didn’t take it for 10 days, so the drug company made one do the same thing in one day, and cost 10 times as much. Treatment went fine. Slept most of the day. Felt fine afterwards.

Wednesday, June 18, 2003

Felt fine. Still ever present cold. Still unable to sleep through the night. But already starting to feel more tired.

Thursday, June 19, 2003

Doing well. Tired, but OK. Was able to set up some sprinklers for the new trees, but wasn’t able to finish fixing all the others that needed it.

Friday, June 20, 2003

I’m writing this early in the morning because, once again I couldn’t sleep through the night. I think the ever present cold might have something to do with it.

Saturday, June 21, 2003

Tried to move and fix some sprinklers in the morning. Very easy stuff. But it wore me completely out, down to the bone. Couldn’t do anything the rest of the day. Missed a leadership meeting.

Sunday, June 22, 2003

Still tired from yesterday. Didn’t do much. Didn’t go anyway. Stayed home from Church. Had to work late Sunday night to fix email problem in China.

Monday, June 23, 2003

Worked from home. Really tired. Work / sleep / work / sleep etc. But I got a lot of work done. Ann kicked me out of the bedroom because my coughing was keeping her up all night. Can't get rid of it. I don't sleep very well, not just because of the cough, but just can't relax.

Tuesday, June 24, 2003

Started off with a phone call from work early in the morning. Started working and didn’t take a break till after 1:00. Then finished rest of cleanup projects. Felt a little better, but only because I never left my chair. Still coughing, running nose.

Wednesday, June 25, 2003

Went to work in the morning, but couldn’t handle it. I got hot and sweaty, then cold, then hot, and always tired. Came home at 1:00 and took a nap. Then worked from home to get my work done.

Thursday, June 26, 2003

Worked a full day at the office. Felt OK, but took several naps at my chair. Got a lot of work done.

Friday, June 27, 2003

Worked a little from home, but already had 40 hours in before the day started. I think I worked so much that now I can’t do anything else. I still feel run down, but sitting at a desk doesn't wear me out, so I was able to work from home and not feel too bad. I meet with Dr Robert for the first time. Had an appointment, and minor examine. He said everything looks good as far as treatment goes. He is going to give me some time to recover, they start the radiation on July.

Saturday, June 28, 2003

This last week was the worse since I started Chemo. I felt better today - even mowed, trimmed, and fertilized the lawn. But that's all I could do. I still have a bad cough. Still sleeping in other bedroom. Still taking Tylenol PM, and Tussenix, and Antivan. But it doesn't seem to help.

Sunday, June 29, 2003

Coughed all night long, even with taking Tussinex, Tylenol PM, and Antivan. Just couldn't stop coughing - laying down, sitting in the recliner, sitting up - still kept coughing. So now, not only do I feel run down, but I am tired also.

Monday, June 30, 2003

Same as yesterday.

Tuesday, July 01, 2003

Same as yesterday. Stayed home from work.

Wednesday, July 02, 2003

Stayed home from work. Had my Blood work done again. The WBC was higher, but still low. My RBC and Hmg were the same - low. That accounts for my feeling so run down still, but and why I'm having such a hard time getting rid of this cough.

Thursday, July 03, 2003

Had the worst night yet last night. I think the NyQuil is what is keeping me awake. Then I feel tired and run down the rest of the day. I was finally able to get some sleep at about 6:00 AM, for about a half hour. Was able to take a couple of short naps. Went to Bingham Copper mines - it was a vacation day. Ann drove and I didn't do much.

Friday, July 04, 2003

Was able to sleep most of the last night. Cough only woke me up three or four times. Worked in the garage, which wore me out by the end of the day, even though I didn't do anything strenuous.

Saturday, July 05, 2003

Went on a day trip. Just sat in the car most of the day. I was feeling better, but still coughing. Noticed that my neck gland, under my jaw was swollen.

Sunday, July 06, 2003

Had a restful day.

Monday, July 07, 2003

I was able to go back to work, and work a full day without getting tired. Still coughing at night, but not as much. More than Ann would like, but not enough to keep us awake all night.

Tuesday, July 08, 2003

Worked a full day at the office. Felt OK, but took several naps at my chair. Got a lot of work done.

Wednesday, July 09, 2003

Same as yesterday

Thursday, July 10, 2003

Same as yesterday

Friday, July 11, 2003

Same as yesterday

Saturday, July 12, 2003

Mowed the lawn and did a little yard work in the morning. Came in and rested between projects. Feeling good, but still get tired if I do any strenuous work. Lump in neck getting larger.

Sunday, July 13, 2003

Still feeling good.

My Life Story

The Life of Lee Giles:

Quote: I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable. (Anne Morrow Lindbergh)

Brief Synopsis:

In 1966 I was diagnosed with glomerulonephritis, a chronic kidney disease. In 1982 I was married with six children and developed End Stage Renal Failure, which is the term applied when the kidneys stop working. I started kidney dialysis in 1982. Six months later, the day after Christmas, I received a kidney transplant from my sister. The next day my house burned down, but wife and ally my children were not at home and were safe. Two months later my told me she was in love with my oldest boy's Sunday School Teacher and wanted a divorce. As a result of the stress brought on by these events, I lost my transplanted kidney and had to go back on dialysis. For the next ten years friends have told me that my life was a soap opera, and that I should write a book. I wasn't able to work for most of the next ten years because of my health, and because nobody was willing to hire me while I was on dialysis. Ten years later, in 1992 I received my second transplant from a car crash victim. In 1994 I married my third wife. Since then I have had basal cell carcinoma (skin cancer), two heart attacks, 5 angioplasty stints, non-Hodgkin's lymphoma resulting in chemotherapy and radiation treatments, an open heart quadruple bypass operation, and now degenerative disc disease which has cause nerve and muscle damage in my arms and pain in my back. This is my story.

Names Have Been Changed:

Because of the dynamics of my life, the fragile relationship with my children, and not wanting to hurt anyone, the names used in this biography are not their actual names. As you read on, you will understand why I have chosen to keep their names, and mine secret until after I die.

Why Write This Story?

I was talking to my daughter the other day and she asked a question about my past, which I did not remember. After some kidding around about losing my memory (don't know it was always kidding), she told me that she wanted me to write my history so she would be able to know more about me, since I wasn't able to raise her and had no real relationship with her until she had her first baby (that story will come later). So this is for her.

The Early Years:

I was born in Salt Lake City, March, 1949. I weighed 10lbs 11oz, the largest baby the doctor had delivered, and the third largest baby in the history of St. Mark's hospital. I lived in Salt Lake City (Rose Park) for the first two years of my life. My dad was a manager for J.C. Penny's and was transferred quite a bit in the early years of my life. By the time I was in first grade, we had lived in Billings, Montana; Rock Springs, Wyoming; Twin Falls, Idaho, and Portland, Oregon . The only thing that I remember about Billings is that once it snowed so much that we couldn't go out of the front door because it was buried in snow up to the top of the door. All I remember of Rock Springs is dirt and wind. I don't remember anything about Twin Falls. After the move to Oregon, my parents decided they didn't want to move around anymore so we settled in Portland.

My first memories in Portland were walking to school. I'm guessing it was about a half mile away. We didn't live in a very nice neighborhood, but the perception was that children were safe back then, and most everyone walked to and from school. The playground of the school was next to a large park, and there was very little cement or blacktop in the playground area.

I also remember going to Peninsula Park, to watch the penguins. They had converted the swimming pool into a penguin display. I thought it was pretty cool, no pun intended since these weren't cold water penguins. We had an apricot tree in the back yard, and I loved to pick apricots. My brother and I, and my two sisters, had bedrooms upstairs, and our parents bedroom was on the main floor. That's about all I remember about living there.

In the middle of my second, or third, year of elementary school, our family moved from North Portland, to North East Portland. I later found out that the reason we moved was that we were originally living in the Jefferson High School district, which was mostly black. I didn’t know it at the time, but it became very apparent later in my high school years. All I remember is that when we were looking for a new home, I loved one particular house that we looked at – because it had red carpet going up the stairs. That’s all I remember out the house that we moved into, in 1956.

The house we moved into was a Dutch Colonial. The address was 2724 NE 24^th Ave, on the corner of Knott Street. In this neighborhood, all of the streets that run north and south are Avenues, and the east west are Streets. Most of the streets have Native American names such as Klickitat, Siskiyou, Stanton, Freemont, Tillamook, etc. The grade school I went to was Alameda Elementary School, and included grades 1 – 8. I walked to school everyday (.6 miles – seemed farther when you’re in grade school). I remember many of my walks to and from school. Sometimes I would run, but most time I would walk. I remember many times when I left my coat at school, and when I got home, I would have to go back and get my coat. I don’t ever remember, during all the time we lived in this house, 8 years, having two cars. I don’t ever remember my parents driving to me school, or picking me up from school. I don’t remember walking to or from with any of my brothers and sisters, but don’t know why. I may have, but I only remember walking by myself.

I remember the first day of school, looking around at all of the other students, actually all the girls, to see which one was the prettiest. In thinking back, I realize that I have done this all my life, even now. I later realized that I am a visual person and visual looks are important to me, not only the visual looks of people, but in everything I see, which explains why art and photography have been such a major part of my life? Although the visual is important to me, it’s not everything. I recognize good looks, but don’t always need to, or even care, about making them better. For example, I have never considered myself good looking, but I don’t really do anything to make myself look better. I like nice looking homes and interiors, but don’t find it necessary to have them. I’m looking at our home as I am typing, and what I see is nice, but not great. Now if I had lots of money, then things would be different.

One of the prettiest girls in my third grade class was Trudy. Our relationship for the next ten years was a classic on and off relationship. I liked her in third grade, she liked me in fourth grade, I liked her in sixth grade, etc. She was also my sister’s best friends. She was a big part of my life growing up, and eventually broke my heart more than anyone else ever has. But in looking back, I can see that if we ever had hooked up, or married, it would not have worked. I don’t think she, nor anyone else, could have or would have stayed with me through all of my ‘trials’. I don’t know what I ever did to deserve to be put on trial, and I don’t know what I am accused or, or what the verdict will be.

Unlike many people, I don’t remember the names of any of my teachers. I don’t even remember them, or my interactions with them. I don’t have a lot of memories of grade school, but I do have some…

My most memorable memory was in fifth grade. From first grade through sixth grade, we stayed in one room for all subjects. But we did have special teachers that would come in for an hour and teach their specialty. One teacher taught music. I remember the entire class had to sing a song, which I don’t remember, but I do remember what happened. The class san the song, and at the end of the song, the teacher had me and three other students stand. He said that because we didn’t sing the song the first time, we would have to sing it again – by ourselves. The other three boys sang the song, but I didn’t. So he had me stand and sing a solo. That was NOT going to happen. So I had to stay after school, and I had a private music lesson. I was in the school band or orchestra and he was the director. One year I played trumpet, and the next year the drums. So my teacher was a little suspect when I told him I couldn’t sing, because I couldn’t find the correct notes. He said something to the effect that I could find the notes when playing the trumpet, so why couldn't I when singing. I told him I didn't know. I then tried to sing, and I don't remember exactly what he said, but basically he agreed with me. He said I could take some voice lessons (I don't remember if he offered, or if they were to be by someone else), but I wasn't interested in the least. So while it wasn't because of this class, but none the less, I don't sing in public. Never have, never will - not in a group, not even in church. But of course there are always exceptions... I once sang Happy Birthday at a party, but that's about it.

The other memory I had while attending Alameda Elementary, was my Art teacher. She said I was very good, but there was one other girl who I thought was better. She had more talent. All I could do, and it never changed later in life, was to copy work that someone else had already done. I was never really creative, but I could duplicate what I saw pretty well. This is trait has lasted my entire life. Along with that has always been a lack of self esteem. I am very critical of myself, as evidenced by my not taking any art classes in high school because I felt there were two other students that I knew that were better than I was. So I didn't want to take art classes and have someone be better than I was, which would hurt my self esteem. I know it doesn't make any sense, but that's the way I felt.

I remember gym classes at Alameda. We played kick-ball, softball, basketball, and soccer. When we played outside,it was on asphalt. We had no grass anywhere on school grounds, and there were no parks close by. I wasn't real good at any of these sports, but then as I always say, "good" is a relative word. I was never the last kid chosen when teams were picked, but then I was never picked first. I was usually picked somewhere towards the top, but never the top. Another story of my life. But there was one thing that I was good at. The school had all sorts of physical tests that they kept track of, and even had a plaque that hung in the gymnasium with all the school record holders of the tests posted. The tests were like 100 yd dash, high jump, softball throw, and standing broad jump. I was the best at the standing broad jump, and my name was on the plaque for several years, and for all I know is still hanging there.

I also remember the first fight I ever had (the first of three in my life). We were playing recess, and another boy didn't like what I said or did, but he started fighting. I took him down and put him in an arm lock, and held him there until a teacher came. To my surprise we were both taken to the office and were both sent home. They were not concerned who started the fight, or that I was just defending myself, but only that there was a fight. I don't remember being disciplined by my mother, who was the disciplinarian of the family, so it must not have been bad.