September 10, 1997

Steve R's TC story

Author's note - this is based largely on email I wrote to friends and family, so there may be some comments that seem odd until you look at them in that light....

Monday, July 28, 1997 9:40 AM

I went in for a vasectomy about 2 months ago, and during the physical exam the urologist felt something he didn't like on my left testicle. He ordered an ultrasound, which was inconclusive. My testicle was smaller than normal, and showed "calcification" throughout. He said if it was cancer, he would expect the testicle to be enlarged, not smaller. He basically said we could monitor it every 4-6 months, or I could just get it out. He recommended a second opinion, which I obtained. The second urologist said if it was him, he'd get it out. Jorie (my wife) and I thought it best to be on the safe side, so this past Monday (7/21/97) I had surgery to remove my left nut (kinda like My Left Foot, that movie. OK, maybe not). On Friday, I went in to get my staples removed and get the pathology results, which we expected to show nothing.


I was told there was a small (20mm X 16mm X 16mm) malignant Seminoma tumor found in the recently removed member (a.k.a., dismember). Presumably this developed since the ultrasound, or they just missed it. Seminomas account for about 40% of all testicular tumors and, fortunately, are very treatable. I found this out through my research, which relied heavily on the TCRC. My follow up treatment is a CT scan (a.k.a., cat scan) this Wednesday (30th), then radiation treatments on the 7th. This is not something I'm expecting to die from.

I've been asked how I feel about having cancer. I've got a few takes on it, some developed before I did my research which found that its probably not life threatening. First, my salvation is assured through Jesus Christ, so if God calls me home, I have no fear of what comes next. If that were the case, my greatest regret would be leaving Jorie and the boys and missing the boys grow to men. That sounds a bit dramatic now that we know what we know, but I thought I'd still share. My second take on the whole thing is that I'd much rather have a treatable form of cancer than go blind, become paralyzed, etc. There are many more worse things.

So, as you can tell, my spirits are high. Before we got the diagnosis, my brother gave me a "sympathy" card. It was for a woman who had lost her husband, but he made some editorial comments. Originally, it read: [front] "With Sympathy in the Loss of Your Husband" [Inside] "Although your husband is no longer at your side, may you find that he is always in your heart." Revised, it reads [front] "With Sympathy in the Loss of Your Testicle." [Inside] "Although your testicle is no longer at your side, may you find that he is always in a jar on your dresser (or whatever they did with it)".

My research recommends regular testicular self exams for all men, regardless of age. Obviously that will only take me half as long as you.

Thursday, August 07, 1997 6:06 PM

The saga continues....

Actually, some pretty good news this time around. But to start from the beginning (or where I left off from above), I went in July 30th for the CT scan. They gave me two quart bottles of "contrast solution" to drink, half a bottle each half hour before the appointment, which was scheduled for 8:30am. I dutifully sucked down the creamy white chalky gunk starting at 6:30 (then 7, 7:30, and 8), then got in and was asked where my last dose was. Apparently I was supposed to start at 7:00 and drink the last one right before the scan. So I got yet another cup of the stuff that made me fart all morning long. As she was giving it to me, she said, "This probably won't be as good since it's not chilled," and I said, "You can chill it?" Should have known this was not a good omen. The white gunk is intended to contrast your digestive system so it shows up on the X-ray. Well, this leaves out all the other tissues, which they solve by injecting an iodine substance via IV. As that was going in, I was told it would make me feel warm and I'd get a brief metallic taste in my mouth, both of which occurred. Then the scan, performed as my body passed incrementally through a ring. With each scan I was told to hold my breath by a computerized man. From the report, I found out the scans come out as a cross section X-ray, as if you got chopped in half and they're looking down on you. They scanned every 7mm in my abdomen, every 10mm in my pelvis.

At the completion of the scan, the nurse came to take my IV out. About the same time, my neck started itching. Then my groin/crotch area. Then my whole head. I asked if I should be itching, and the nurse looked at me and said, "No. Your having an allergic reaction to the iodine. Let me go get the doctor." By the time the doc got there (by which time I'd been asked five times if I could breathe OK - I could), I was REALLY itching. He said I could suffer through it, and the hives that were now readily apparent would disappear in 3-5 hours, or he could inject Benadryl into the IV. I opted for the Benadryl. Ten seconds after that stuff went in, I was feeling much better. An hour later, the hives were gone.

We were told we could call my urologist 2-3 days later for the results of the CT scan, or wait until the initial radiology appt. on Aug 7. I called Gorab's office (urologist) two days later, knowing he was on vacation, but hoping to get the info from his nurse. She was on vacation until Monday (4th). Then when I called Monday, I was of course told (via the receptionist after she talked to the nurse) that the nurse couldn't pass test results, only the doctor. This was killing my wife and mother, who wanted to know NOW what the results were. I wasn't in such a big rush to get the results since (a) they would still be the same results we'd get today at the radiologist's and (b) the results really didn't matter inasmuch as the treatment was concerned. I'm due to get radiated either way, the results would just tell me how much I'm getting.

Well, the rad's nurse called Tues (5th) to see if they had all the tests that have been done on me to date, and Jorie wrangled the CT scan results out of her: all clear. She said she wouldn't (couldn't) have told her if the results were bad, but since they weren't....

So today we had the initial appointment with the radiation oncologist, Dr. Kersey. He told me (as my research had confirmed) that although the CT scan was clear, there was a 10-15% chance that there was microscopic spreading, which would develop into tumors. Radiation treatments lower the risk to below 1% for recurrence. He recommended 15 treatments, to be administered each weekday until complete, of 167 rad's each, for a total of 2505 rad's. I've been told by a doctor friend that a woman who got a mammogram each year for 40 years would get about 50-100 rad's.

So, after that consult, I went in to be "measured" and "planned" which involved laying on a table for about 45 minutes while numerous X-rays were taken and my body was marked up with felt tip pens. The culmination was three small dot tattoos on each hip and above the surgical scar on my belly. This tells them where to aim. The first actual treatment is Tuesday at 10:30, then each weekday at the same time (yet to be determined) until I'm done. Side effects, which vary from person to person in severity, are nausea, diarrhea, hair loss at the site (not all over as with chemo), "sunburn"/skin irritation at the site, and fatigue. I'm getting some drugs for the nausea. I'm also getting conflicting reports on whether or not this will sterilize me. The doc implied it wouldn't, the nurse said it definitely would. So I may not be needing that vasectomy for the remaining member....

Dr. Kersey also provided copies of all the medical reports to date. It was nice to read over all them for myself rather than have a doctor filter what he had read. My favorite line from the surgical report was "Sponge and instrument counts were correct." I should hope so.

So anyhow, that's the story to date. I realize that it might be a bit much detail for some of you, but my purpose is twofold: First, I want to thank all for the prayers offered on my behalf, and want you to know that Jorie and I feel that God has definitely been in charge the whole way. The course of events was too much for mere coincidence: Just the fact that we went in for a vasectomy (with my wife being wishy-washy on the issue of another child), then the initial ultrasound tests being inconclusive (no tumor yet?), then the 2nd opinion recommending removal, then a small tumor being found early enough that there was no spreading (tumor size was 16mm X 12mm X 12mm, not bigger as I initially reported above). So our faith has certainly been strengthened, not diminished through the whole episode.

My second motivation is to encourage you males to grab your crotch periodically and search for anomalies. As I've said, this is the most common cancer for young men, and the earlier you catch it the better, especially if its one of the more virulent ones that I'm lucky enough not to have.

Guess that's it for now. I'll let you know how many times I vomit.

Now that I'm glowing....

Actually, radiation doesn't make you radioactive, it just shoots straight through you damaging healthy and potentially unhealthy cells alike. It's those (previously) healthy ones that have been giving me the most trouble...

Day 1, Tuesday, Aug 12th

My appointment was at 10:30, and Jorie tagged along to watch. They took some time to set up, lining up the lasers with my tattoos, taking a few more X-rays to verify that the block (a custom built lead shield they put in front of the rad. machine so only the areas of interest are zapped) was the right size. Then I got 83.5 rad's on the front side (about a 10 second burst), and the machine rotates around to give 83.5 on the back side. I also got a nice magic marker outline of the "field" (zap area) and a Polaroid taken of that for my records so they know they got the right block. I took my anti-nausea pill (Compazine, 10 mg) an hour before as directed, and was fine for 3-4 hours after the treatment. But then it hit. I got nauseous slowly, and took my pill at the prescribed six hour interval after my last. I was working about 30 minutes from home, and took off a little early. Called Jorie before I left. I only made it about half way home before I had to pull over and lay down in the truck. Twenty minutes later I didn't feel any better, but I forced myself to get up and go because I knew Jor would be worried. By the time I got home, my arms were tingling from my fingers to my elbows, and I also had tingling in my chin and tongue. I was pretty woozy too, shouldn't have been driving (and Jor says I won't for the remainder of this torture). But I made it. Laid down for a few hours then finally started feeling better. Didn't puke, but maybe I should have. You know, for the first time, I really feel like I have (had?) cancer. Up to this point it hasn't been all that inconveniencing, save the operation. But I think this will be worse. [Editor's Note: I would bet that his fatigue was caused by the compazine, not the radiation.]

Can't wait for the next one. Only 14 more to go!

Day 2, Wednesday, Aug 13th

Let the vomitfest begin!

My treatment was at 3:50, as it will be every day hereafter. I told them about my experience the day before, and met with the nurse after the treatment. She gave me a new anti-vomit prescription (Promethazine, 25 mg), which I went to fill immediately after the treatment. My Dad drove me to and from. By the time the prescription was filled, I was already turning green. I hung my head out the window as Dad drove, and managed to keep everything down, at least until I got home. I had decided that today I wouldn't lay on the couch in misery all evening, instead I'd just go hurl. I lay on the couch for about a half hour before finally heading to the bathroom to empty my stomach. Back to the couch, wait a half hour, back to the bathroom. I continued that pattern until 9:00 PM (though the time between became more frequent), at which time I was allowed to try out the new prescription. I still felt bad after that, but managed to not hurl again. The waterbed didn't sound real good, so Jorie just pulled off the cushions from the couch and I crashed there until I woke about 3:00 am. Was feeling pretty good then, so I went off to bed. Slept in then forced myself to get to work by 8:30. Feeling pretty good this morning, all things considered.

I kinda lost track, but I think we can safely put the vomit count at eight.

Day 3, Thursday, Aug 14th

Took a bit of a different strategy this time, told myself I wouldn't automatically go barf whenever I was feeling sick. In addition, I went straight to bed when I got home from the radiation, and actually slept until 7:00. Then, of course, around 7:30 I was up puking, then again about 8:15, but that was it for the night. I was asleep again by 9:00. It sure is better sleeping than throwing up.

I'm continuing to work, though only about seven hours per day. I've lost about five pounds already too, which worries my wife, but I was carrying a little more than I needed anyway. This morning (15th) the screaming trots hit, I was on the toilet a couple times vomiting out the other end. I tell you, I'm glad its Friday and I can look forward to a radiation free weekend. I think I might be feeling human by Sunday (just in time to get back to it).

So, that puts the cumulative vomit count at 10.

Day 4, Friday, Aug 15th

Best day yet. Took the new prescription again, and once again went to bed immediately when I got home. I slept until about 6:30, then was awake until about 9:00. I got up to pee, but otherwise didn't move for the whole time. But I wasn't nauseous either, so that was the best news. My stomach kinda felt unsettled, but that's much better than hurling. I actually got up to get something to eat about 1:00 am. The nurse asked me after today's treatment how I was doing, and I told her that I made a couple of offerings to the porcelain god the night before. She offered yet another prescription, and I think I might try that out Monday.

Weekend! Aug 16-17th

I was about back to normal. I felt like the day after a flu - stomach unsettled, a bit weak, but able to eat. Only problem this weekend was that I was spending a lot of time on the pot, but that's much better than hanging over it. Of course the Quarter-Pounder with cheese probably didn't help, but I couldn't resist. I know I won't be able to do that for another week. Hopefully I gained some weight back this weekend. If not, I know it wasn't for lack of effort. Now I just gotta get through the week to come.

P.S. My 3-yr old son was in a friend's car when it got rear ended and totaled this weekend. Thank God he (and everyone else) was just fine, but it surely hit home that there are worse things than radiation treatment. I would gladly go through this for a year to keep him safe. Kinda puts things in perspective.

Day 5, Monday, Aug 18th

Drugs that actually work? I'm on my third prescription (Torecan, 10mg), and it is working very well. I actually had some cereal before I went to bed last night. I followed my same pattern - come home and nap, then lay in bed, but never got nauseous. It would sure be nice to get through the rest of this vomit free. My focus has now turned to being concerned about being in shape for hunting season. I might try to go out for a short stroll tonight if I feel as good again. I am still sleeping in and going into work an hour late.

Day 6, Tuesday, Aug 19th

Too good to be true. I actually felt pretty good most of the evening, and was up and about for about 20 minutes. I had some water, then laid back down. About 20 minutes after that, I wasn't feeling too hot. Finally got up and made it (it was close) to the bathroom for a hurl. Then I was back to bed for the night, and felt fine this morning (20th). In fact, I decided to drive myself to work and the hospital today instead of getting chauffeured everywhere. I think tonight I'll stay in bed.

Vomit count: 11. Days remaining: 9.

Day 7, Wednesday, Aug 20th

Another good night last night. Didn't nap after the treatment, just laid down and read. I was feeling good enough to get up about 8:00 and had a small bowl of cereal. However, this morning I found myself on the toilet again. That seems to be a cumulative thing - after a couple/three treatments my bowels finally say, "Hey, what's going on!" But I much prefer that to the vomiting.

Now, where's that Kaopectate?

Day 8, Thursday, Aug 21st

Well, it was an interesting appointment yesterday. I've read that many times when you get this radiation treatment, they have a three inch hollow lead sphere that they put your remaining testicle in. This protects it from scatter radiation, which can result in a cumulative 60 rads. (I've read 100-200 will cause temporary sterility.) With the sphere, this is reduced to 3-4 total rads. When I first got there, they said they didn't have the sphere, but yesterday, low and behold, they showed up with one. What they didn't have was the stand to hold it at the proper height, so they fashioned something out of Styrofoam and held it in place by taping it to my body. Now, I'm not a really hairy guy, but I've got enough to tell when that tape came off. In addition to that, throwing the remaining member in a cup with a roomful of people observing was slightly more uncomfortable than staying covered with a towel, as I had done to date. So. After I was all done, I confirmed that the purpose of this thing was fertility protection, then informed them that I discovered this thing when I was going in for a VASECTOMY. "Oh," he said. "I'll talk to the doctor." I hope not to see that thing again.

Last night was good. I even went out to lunch yesterday and had fajitas, but no adverse effects. So the vomit count for the whole week is only one. And the weekend's coming!

Day 9, Friday, Aug 22nd

Boy did I get the speech today. I went into the zap room, and the nurse wanted to talk to me about the "gonadal shield" (guess that sounds better than nut cup). She wanted me to know that even though I want a vasectomy, I didn't have one yet and that if my wife were to get pregnant there would be a risk of fetal abnormalities. I said I understood, but I didn't want it. She said OK, she'd note it in my records. Funny they didn't make such a big deal of this BEFORE they got their gonadal shield. Ah, well.

The rest of the evening went well. My parents came over for dinner, and I actually got up and had some dinner (salad) with them. I felt a bit unsettled, but no real nausea or pukage.

Weekend, Aug 23-24th

The weekend went well again. I tell you, I thoroughly enjoyed my homemade pizza Saturday night (and Sunday lunch). The diarrhea's under control, I'm sucking down Kaopectate pretty regularly. Looking forward to the end of this, which is just about in sight.

Day 10, Monday, Aug 25th

I had blood drawn today for a CBC. For those of you who have no idea what that is (as I didn't), it's a "Complete Blood Count," red cell, white cell, etc. I had some pretty good bruising at the stick site, which I usually don't get.

Another good evening. I had some cereal and bread late last night. I'm just being a slug each evening - laying down as soon as I get home, but that approach seems to be working. I'm 2/3 of the way there - only five more days!

Day 11, Tuesday, Aug 26th

Kinda getting boring. Same as yesterday - laid down after the appt, was up about 7pm for a small meal. My bowels aren't completely behaving themselves, but its manageable. The end is in sight.

Day 12, Wednesday, Aug 27th

I had a post-surgical follow-up appointment with the urologist today before my treatment. My main question to him was the ultrasound - was the cancer there and it was just missed, or had it developed since then? His answer was somewhat disturbing. He said that Seminoma was a very slow growing cancer and was definitely there at the time of the ultrasound (back in May). In fact, it may have been there for years! I suppose that's better than a fast growing, aggressive cancer, but it was still unsettling. It did make me glad that I'm getting the radiation done. I had a meeting out of the office yesterday, and decided to splurge with a Wendy's hamburger for lunch. Wrong answer. I was on the toilet three times before my treatment, the last one while at the hospital waiting my turn to get zapped. I think I'll steer clear of the grease for the remainder of this ordeal. I met with the oncologist after today's treatment. It was a rather short meeting, he just asked if I was doing OK. The nurse took my vitals before the meet with the doc, and the only problems are that I've lost about six pounds, and my platelet count from the blood test was slightly low. That explains the bruising from the needle stick, which I've still got.

The evening was pleasantly uneventful again - no puking. I had my customary bowl of cereal at about 7:30, then beat my wife at backgammon.

Day 13, Thursday, Aug 28th

Yet another nondescript night. I planted myself in front of the TV tonight and enjoyed some college football. By halftime I felt good enough to enjoy my regular bowl of cereal, then clean guns. Jorie went to a baseball game and brought me back a sub sandwich, and that went down well. Two more to go.

Day 14, Friday, Aug 29th

Another good evening. Did the same routine - laid down, read, then up for some late cereal.

Labor Day Weekend, Aug 30 - Sept 1

A good weekend. We kept busy - fishing Saturday, church and an afternoon BBQ with the family on Sunday, then actually exercised on Monday. It was my nephew's first birthday, so we walked over to my brother's house and back with eight month old Zach on my back, about three miles total. My lungs were fine, but my legs are sore this morning (Tues). My wife did notice that I'm sporting a bit of a sunburn where I'm getting zapped. And the hair they shaved off for the surgery isn't growing back real well. Hopefully that's not permanent. One last treatment and I can put all this behind me.

Last Day! Tuesday, Sept 2

Another boring evening (just the way I like them). I saw the doctor before the treatment, and he said I was doing well. I'm due to see him in another six weeks (I guess to make sure I don't have a new mutation growing out of my belly). But its over!!!

Epilogue (Sept 10, 1997):

Once that first week was over, I guess the radiation was bearable. It just put me out of commission for a while. It was much better than chemo, from what I've read. I'm glad I only had to do it for three weeks rather than four or five, which I would have had to do if it had spread. I'm slowly getting in shape again, and my spirits are good. Only problem is the lack of hair down there. I've got some stubble, but it's like peach fuzz (not dark), so I guess I'll just wait and see what comes out. I'll probably be blond on one side, brunette on the other.

As a friend told me: 100 years from now they'll say, "You actually RADIATED someone to cure them of cancer? How barbaric." Radiation and chemotherapy are potentially fatal "treatments" that they give just enough of to not kill you.

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