Okay so I stole the title from the movie with Michael Keaton. He finds out he has cancer as his wife is pregnant with their first child so he makes a movie about his life to give to the child to tell him/her about his life - I liked it - surprisingly upbeat. But enough of the movie review...
In January of 1990 I noticed a lump on my right testicle and never did anything about it. I was 25 years old, had just graduated university and worked as a forest engineer. I was in the best shape I have ever been in as my job involved hiking up mountains for 8 hours a day.
In February I met Teresa at work and we started dating. Near the end of that month I told her about my little lump (and it truly was very little). She was more concerned about it than I was, and she cornered me one Sunday afternoon and made me tell my sister in law (Deb).
Deb was a head nurse on the Bone Marrow Transplant ward at Vancouver General Hospital, and she immediately set up an appointment with one of the head urologists in the city for Tuesday of the next week - it's all in who you know sometimes. This was fortunate as I didn't even have a family doctor at the time, and the way the Canadian medical system works is that you must get referred by a GP to a specialist - and God knows when I would have bothered doing that. My brother jokes that without Deb and Teresa I would have just fallen over dead in the woods one day and they would have opened me up and found that I was hollow. So I go see this Doc and he examines me for all of 30 seconds, tells me from the location on the testicle that it is very serious and schedules surgery to examine it for 2 days later.
I went under the knife and had the testicle removed. This was all happening so fast that I don't remember any of my friends even knowing what was going on. I got this little tiny scar (maybe 4 inches) above my right leg - surprised the hell out of me as I assumed that they would go through the scrotum - must have been another one of those questions I forgot to ask or they told me but I never remembered. This is an interesting side bar - make sure when anything important is being explained to you that there is someone there who is slightly less emotional than yourself so that you can remember the whole conversation. I found that when the doc would tell me the life/death statistic in the analytical, calculating type that I am, I was too busy figuring out probabilities to hear what he said beyond that point.
Anyway, he must have done a good job as I can barely see the scar today. I embarrassed the hell out of Teresa by trying to show her the scar (she also thought they would be going through the scrotum) while I was slightly whacked out on Demerol. The urologist came and saw me in the hospital and told me it didn't look good but they would have to wait for the biopsy to be sure. The day I checked out of the hospital (about 5 days later) he came to tell me that it was cancerous, and now I would be turned over to the Cancer Control Agency of BC (CCABC). They had also done a chest X-ray at the hospital and found some spots in my lungs.
I went the next week to CCABC and met one of the smartest men I have ever known in Dr. Nevin Murray. They did a bunch of blood work and Dr. Murray gave me his opinions as to how to best treat this. Deb (the sister in law) was quietly reconfirming the diagnosis and prognosis through her contacts. I figured I was pretty much bullet proof at this age and I was not too worried about the whole thing - which is probably a lot more than I could say about the rest of the family. My parents were very worried and had asked about taking me to the doctor in the US who developed the chemo protocol. My mother has a long history of cancer in her family - she has lost several brothers and sisters, my mother has had a non-cancerous tumor removed, and one of my sisters has had a breast removed - so she was taking this particularly hard as she felt that it had been caused by her genes (It was not until I had my own children that I could understand the pain that a parent must feel watching their children in a life threatening position and they can not help).
I was given about a week to recoup from the first surgery, then started on a course of chemo. I first elected to bank some sperm - hey it is not every day you get the blessing of everyone you know to, well, you know... The first sample was good but the next two were after the first chemo and had already shown significant mortality, but anyway they all got frozen away for future use. I was given chemo for 2 days every 2 weeks for 2 months. (Editor's note: This clearly was not a standard chemo protocol) My first course was around the middle of March and my last was the end of April. I was given the most aggressive treatment they had available - the thought being that I was young and strong, so throw everything at me to stop this and try not to kill me in the process.
By this point you might have noticed that I haven't used a lot of medical jargon. This is the first time I have ever written this down and basically I've forgotten most of the drugs and Latin names - I'd blame it on another side effect of chemo but I don't think anyone would believe me. What I miss in medical terms I will try to bluff my way through on layman's terms. Oh the cancer I had is nonseminomatous testicular cancer ( I'm not sure if I remembered that or learned it on the Internet site).
Okay back to the chemo - while it is an interesting experience for your memoirs, it is not a fun way to spend your weekend. I would check into the Cancer Clinic on a Thursday. Because of the severity of the drugs involved it was done on the bone marrow transplant ward as the nurses there were the only one trained in the use of the little beasts. I usually only had one other patient in the room (the CCABC was partially built by the donations raised by Terry Fox, who died of cancer after trying to run across Canada on one leg - he has raised over $200 million dollars for cancer research and treatment. Look him up on the Internet for a truly inspiring story).
The nurses would start hydrating me (a fancy way of saying they are going to give you enough saline to sink a battleship) for 6 hours and then some time in the afternoon start the first of the chemo drugs. By the time I started the chemo I was so waterlogged that my face would puff up like a chipmunk then stay that way for a few days because of the drugs. In 1990 the anti-nausea drugs were not much - I think stemitol was about it, which just kind of fogged me out but didn't do too much. By that evening I would be into the rest of the drugs.
I always got sick at least once, usually in the evening. I would try to eat dinner that night but I invariable would see it again. For years after I could think of the smell of the steamy food in plastic dishes and feel queasy. The Cancer Clinic was very good about bringing bland meals (yet not usual lousy hospital fare) and lots of popsicles and ginger ale.
I remember one of the worst things was that you had to pee a lot and you had to pee into a beaker as the nurses need to record it. It was grueling to get up and shuffle to the bathroom with the IV hooked up and try to get the thing in the toilet with you, and I was all groggy and felt like I would pass out when I was standing up, and then try not to whizz all over your hands or drop the damn beaker. I would get a few hours sleep at the most.
Sometime the next day, I think around noon, they would send me home. I was living in a townhouse with 3 other guys so rather than go there, I went to my brothers and sister in law for the weekend. It was good to go there as I got waited on hand and foot, but it was an hour drive from the hospital and it was always a really rough ride for me. Teresa would come and stay there too.
That first night (Friday) was usually pretty bad. I couldn't sleep, I was restless, anxious, felt like hell. Deb was a tyrant about making me drink fluids and it was the last thing on my mind. Maybe by noon the next day I could eat a little bit. I found that lots of hot baths seemed to help my restless and muscle aches. For me it was like having a really bad flu. By Sunday I would be walking around the block and feeling not too bad. I would take it easy for a day or two then work part days for a few days in the office. By the end of the next week I would be back full time at work and feeling pretty good.
As the cycles of chemo went on it did wear me more and more down in between. I started losing hair by the start of the second cycle (14 days) so I cut it really short. I lost every bit of body hair except I still had some hair on my head - although it looked pretty thin. My two year old niece asked me how come my hair was broken. It always amuses me to see in the local newspaper where some cop, teacher or politician will shave his head if he raises X dollars for cancer. While I praise their efforts and don't want to belittle them, it is one thing to shave your head and have stubble growing back within 24 hours, yet quite another to have no eyebrows, eye lashes, facial hair or scalp hair. There is a world of difference between someone with a shaved head and some one on chemo - you just look sick. It may be a vain and silly, and I never minded sharing my illness with family and friends, but I hated the looks I got from total strangers who could tell that I was sick with something horrible.
Dealing with people at your work while in the middle of chemo is also an interesting experience - half the staff will break into tears, the other half won't look at you or talk to you for fear of getting it. I would say that in 1990 most people felt that cancer, particularly in someone young, was a death sentence. Even Teresa's father asked her why she was even spending time with me after only knowing me for a month when I would surely die soon. I did 4 rounds of chemo and finished at the end of April in 1990. This was probably the longest 2 months of my life - it was like looking forward to getting the flu every two weeks and each time took more out of me and was harder and harder to bounce back from.
I really had no major medical side effects from the chemo except for one self induced incident. It was a beautiful spring day about 5 days after the third treatment. I was feeling really good and my roommate and myself went to a park and in the course of the afternoon I had 2 beers. This was the first alcohol I had drank since starting the treatments - I don't remember now if I was told not to drink or what, but anyway that night and all the next day I was violently ill. I could not keep anything down - even water. I finally phoned Dr. Murray who brought me in to the cancer clinic and gave me saline by IV. It was amazing that within 15 minutes I was fine - I was still throwing up as they put the IV in, but as I got rehydrated it just tuned me right up. I think there might be a cure for the hangover in this but I digress.
Now the chemo is all done - the spots in my lungs have been shrinking and the HCG counts (pretty technical I know) dropping appropriately. I took a month off work and relaxed, but two months after the end of Chemo in June of 1990 the chest X-rays showed the spots had grown - I can't remember what the blood work said, but everyone was very concerned.
It was pretty devastating for me and Teresa as we had assumed we were finished with this cancer stuff. Since I had had the meanest nastiest chemo the most sadistic doctor could think of, there was not much of an option in another round of chemo. My best chance was to do a self bone marrow transplant while I was still relatively strong. I talked to someone I knew who was going through it at the same time and decided to do the transplant. At the time the survival was about 50%, although my age was a major factor in my favor. I'm not entirely sure what the procedure is now but then I would be chemoed down to death's doorstep, and assuming I didn't cross the threshold I would have to spend around 3 months in the isolation ward of the cancer clinic. Very few visitors were allowed to see you, no kids, outside food etc. I would likely have permanent ringing in my ears, definitely become sterile and a host of other long term potential problems. I hope that the medicine is more refined these days...
I checked into the hospital to do the bone marrow harvest and Dr. Murray has spoken to about 20 experts from all over the world and they have decided that the spots may be a benign teratoma. Instead of having the bone marrow taken, I got my chest cracked open and the spots removed. The surgeon removed 5 out of 6 spots on my lungs (he just could not find the 6th one). The surgery was about 1.5 hours long without any major complications (unless you count the projectile vomiting that accompanies me with anesthetic). I spent 10 days in hospital, holding a pillow while I coughed, trying to keep my nephew from ripping out my catheter for the first 2 days, and trying to walk as much as possible after that. I also got reacquainted with my old friend Mr. Demerol so it wasn't so bad.
One thing that hurts like hell is when the chest drain tubes are pulled out - one nurse holds you down while the other pulls it out. They are inserted about 12" into your chest and come out two slits just above the belly button. I don't think Teresa's eyes could have got any bigger when she saw them pull those things out. The surgeon was pretty sure it was a benign teratoma by the look at it, but it wasn't until the day I checked out that they had the official word.
I took 2 months off work in the summer and in all honesty quite enjoyed myself. I would go swimming every day as it was very good exercise, I read a lot of books, watched almost every episode of 'The Rockford Files' on daytime TV, made dinners for Teresa, and generally took it easy. It could be a little painful when I coughed and to this day I still have the wires in my breastbone where it was wired together. They are just below the skin and if I bump them into anything they hurt like hell.
For the next year I would have a chest X-ray and blood test every 6 weeks, then every 8 weeks after that. I went back to work full time in September and was soon in the same shape as I had left. By one year later, July of 1991, the sperm counts were normal so life had pretty much return to normal.
In December of 1991 Teresa and I got married, bought a house and had settled into a regular routine - my brush with cancer a long ago memory. A year later in December of 1992 the blood tests started to show a rise in the HCG levels....
Since I was pretty sure I wasn't pregnant, it could only mean that the cancer was back. At this point I considered not doing any more chemo treatments as I didn't feel I could do them again. I was given a 90% cure rate after the initial treatments almost 3 years prior, so I was very concerned that this time would do me in. I told a friend that I didn't know what was going to happen, but it didn't look good, but even in the worst scenario I managed to get an extra 3 years out of the deal.
In early January, 1993 I went back to the Cancer Clinic for CAT and MRI (the latest and greatest thing at the time) scans. They could not locate the source of the HCG increase. The logical place would be the 6th spot in the lungs which could still be seen on the X-ray, so following the logic that if a little is good a lot is better, the right upper lobe was removed from my lungs (if I'm not mistaken in my anatomy you have 3 lobes on one side and 2 on the other - so I lost 20% of my lung capacity). Other than my promising career as a marathon runner this really has not interfered in my life at all - and besides it is a good reason to avoid exercise as I become old and lazy.
The surgery left about a 6" scar under my right arm and was pretty painless compared to the chest surgery. I waited a grueling week while they checked and double-checked the spot but in the end the doctor pronounced it benign and the blood numbers continued to climb even faster than before (as it turned out this surgery kicked it into high gear - I'm sure there is a medical term for this but what do you expect from a forester).
Again it was felt that a bone marrow transplant would be the best way to "sanitize" me from the inside out. Again I got to visit the "quiet room" at the hospital to bank some more sperm. Same room, same magazines. Next on the agenda was the lower node dissection surgery. I got all the stats on the nerve damage and chance of shooting blanks, but at this stage it was starting to get very life threatening and I really had no choice. Just prior to the surgery, one X-ray showed a slight shadow on what was left of the lower right lung. At the last moment it was decided to remove that spot at the same time as the node dissection, so as a result I have another scar that goes from my back just below the shoulder blade, under my arm, across the bottom of my ribs, then straight down through my belly button to the belt line. It is 20" long and took about 80 staples to close. Now there is a scar guaranteed to raise some eyebrows at the beach - often it is inquisitive kids so I tell them it is a shark bite and they usually believe it.
This was the worst surgery of the whole lot. To start with you have drink a rainbarrel quantity of colonic to cleanse your bowels. You have to drink the stuff in a few hours which takes like sweat, and then you get to spend the rest of the evening in the toilet. In Vancouver General Hospital you end up in the oldest part of the hospital (I think it pre-dates Confederation, at least some of the nurses do - I'm sure I saw them trying to leach somebody) with all the elderly people with intestinal problems stacked 4 to a room.
After spending time in the bright new Cancer Clinic this was just horrible. I had a gastro tube that sucks the black gunk out of our stomach through your nose and was totally disgusting feeling and smelling. You can't eat for 7 days and then just mush after that. Of all the treatments and surgery I would say that this was the lowest I got one day on that ward all wired up, feeling totally restless, and anxious about the test results and the bone marrow transplant. I just could not talk to anyone more and I felt like ripping all the tubes out and taking what time I had left and enjoying it. The next day, the resident accidentally pulled the gastro tube out a day early much to the distress of the surgeon but I was cheering. I started slowly eating food and the surgeon told me I had to keep all the food down or he would not let me go home. On the day I was being discharged they brought me cream of wheat for breakfast. (I never liked that mush when I was totally healthy). I ate it but promptly threw it back up - fortunately the nurses never saw and I just put the cover back on and told the nurse how yummy breakfast was so that I could get out of there.
The test finally came back that the nodes were clear and that the little fold that they took from the lung was cancerous. While this was good news, it meant that I would not have to do the bone marrow transplant, it still meant that I would require another round of chemo just to make sure they got all the stray cancerous cells.
In April of 1993 I started more chemo - this time using the VIP cocktail of drugs (each letter stands for some drug but I can't remember what - maybe chemo affects your long term memory - either that or I'm just trying to block it all out). Again it was a fairly aggressive treatment - in the hospital for 5 days of treatment, off for 16 days then back again for three treatments. While the drugs were probably harsher than the first time the anti-nausea drugs that had recently been developed (Odansatron I think it was called) were fantastic.
I still would get sick at least once each treatment, but I was up and about, having baths, watching TV - things that would have been unthinkable even 3 years prior. I lost most of my hair again, but I think it was easier going through the chemo knowing that the surgery had found the trouble spot.
One thing that sticks in my mind is my belief in the power of positive thinking. Some people who are faced with a difficult situation like this will find help in religion, others in herbal medicine, still others in shark cartilage and aroma therapy. I really don't think it matters as long as you believe it will work for you.
On my second time in the Cancer clinic I spent one 5 day treatment with a big burly biker guy in the bed beside me. He was having a really hard time accepting that he was sick - one moment he wanted to go home, then he wanted his girlfriend, then he wanted pain drugs. It was quite sad because I don't think there were many people who knew he was sick or maybe cared - I can say that now looking back, but really at the time he was a pain in the ass for me and the nursing staff. I often wonder what happened to him, but I almost guarantee that he never survived. He just did not want to live bad enough and was not willing to do his part in getting better - he just wanted the drugs and doctors to make it better.
I was back to work full time by June of 1993 - I have done regular follow ups since then.
(I now only get blood work 4 times a year and a chest X-ray and exam once a year). I have passed
the 5 year mark last year and this year I actually found someone who would give me life insurance - it is
at 8 times the normal rate for someone my age but in 3 years I will be at the normal rate.
Fertility or the lack thereof
Fertility or the lack thereof
Of huge concern to me (and most men my age) was the possibility of sterility, and since I wanted to have a family, I banked sperm. In September of 1993, which was 5 months after the start of the second round of chemo, I was tested and found that there were absolutely no sperm.
In October of 1993, Teresa and I decided to try using some of the frozen sperm. Teresa would take a drug called Humegon which would stimulate the egg production, then when the time was right I would go to the sperm bank and bring the sample to her. The sperm bank and the IVF clinic were in different hospitals so I had to drive across town as quickly as possible, with the sample in my underwear to keep it warm, to be artificially inseminated.
We joked a lot about getting speeding tickets or being in an accident and what I would tell the cop. We tried this 4 times in October and November of 1993, then February and March of 1994. Teresa always had lots of eggs but nothing took.
It is a real rollercoaster ride on the emotions, and having Teresa whacked out on hormone drugs wasn't helping. I had another sperm test in February of 1994 and this time there was less than 1 million and all dead. In March and April of 1994 we tried adding another hormone drug called Clomid which really produced the eggs. Again nothing happened.
I was tested in April of 1994 and found that there were 17 million sperm but all very abnormal and with low mobility- they were basically all swimming in circles and couldn't find their way to the uterus with a map. We took a break through the summer of 1994 and booked In Vitro Fertilization to start in January of 1995 - this is a big financial and emotional commitment. We were running out of sperm so this was kind of the last ditch effort, however in September of 1994 Teresa got pregnant.
This was very unexpected - I went and got tested (I know what you're thinking but we don't even have a milkman, and the postman is a lady!) and found that I had 68 million strong healthy swimmers. I was back to normal levels of numbers and motility in all about 16 months after the last chemo treatment.
We had a son on June 3, 1995 and then another son on November 8, 1996. Teresa is now pregnant with our third and last child who is due on August 9. I am reminded about cancer every day and know that based on my personal and family history it is probably still be stalking me, but I thank God for what I have and the children that we have brought into the world.
That is the end of my story - I hope I haven't bored anyone too badly or crucified the names of the drugs and/or medical procedures too much. You can e-mail me your comments, concerns, or questions to firstname.lastname@example.org