Ok, had enough of this blathering? Back to Rio Rondo
It seems some of his cells have gone renegade and decided to do their own thing. Whether they thought this up on their own, or whether it's due to subversive viral influence or some old damage from the myriad industrial poisons that he's been subjected to, the result is still the same. Commonly known as cancer, gary maintained that the whole problem was just phlegm. Even when the surgeon came back from surgery and informed him that he had pulled out some material from his chest that was "grey and gelatinous", gary refused to concede and pointed out that this sounded a lot like the stuff he coughs up now and then.
The Pathology lab couldn't figure out what exactly the stuff was, and the surgeon was threatening to go back in and get more, but the lab folk finally identified it as Nodular Sclerosing Hodgkins Disease. Huh. Ok. Here's a stock pathology photo of what this sort of thing looks like:
Gary would normally scrape stuff like this off his boot with a distasteful look, but unfortunately it's not located on his boot, it's located in the middle of his chest, wrapped around his windpipe (aka: Air-Hole) and sitting on top of his heart. Gary doesn't like this. Considering where it's at and what it was doing when he decided to see a doctor about it (swelling up and causing inexplicable pain), if it decides to suddenly go blimplike on him, it will cause an unpleasant "No More Espresso For Gary (Ever)" type situation. Again, Gary doesn't like this, and you can probably understand why.
Since plain defiance does not appear to be a viable method of combatting this particular problem, other methods are in order. Those will include chemotherapy and radiation treatments, the exact details of which are yet to come, but they basically include the introduction of more toxic chemicals into gary's system, followed by dangerous radiation exposure. Both of these are things that Gary would normally try to steer clear of because of their possibly damaging effects, but the specialists say that this results in a very high cure rate so Gary's going to go along with it regardless of the later side effects.
Plain defiance has served Gary well in the past, and through this method potentially life threatening afflictions will commonly do little more than give him gas. Gary isn't always extremely polite about this, as shown in the following example:
On another note, since plain defiance isn't going to work with this one, Gary's purchasing a really large knife. It won't actually help, but it'll make Gary feel a little better since he doesn't feel quite well enough armed with only his defiance. (and you typically don't fight cancer with combat pistols)
Other Person In Vicinity: "Hey, do you have to do that in here?"
Gary: "Hey, I got plague"
Other Person In Vicinity: "Maybe you should see a doctor about that"
Gary: "I'm almost over it"
Other Person In Vicinity: "Yeah, but still..."
Gary: "By the way, this'll probably make you immune to it"
Other Person In Vicinity: "geez"
Ok, now I've been in for more x-rays, and a full torso cat scan, this time with the full barium core. Some of you may know what I'm talking about and it's attendant unpleasantries. Oh well, it's a necessity.
The radiologist's report on the full scan looks ok, especially considering a possible worst case scenario. Still ahead is a bilateral bone marrow biopsy, I'm sure that's going to be a lot of fun.
I've started the chemotherapy, which involves about three quarts of stuff being drained into my arm. This takes a couple of hours, at the end of which I have a pretty solid buzz going. I ate during this, and I think that the other people in for similar treatment figured that I'd be coughing it up pretty soon, but I didn't. Actually, I didn't feel sick to my stomach until late that night, and I fended that off by eating some soft cookies. Good old white flour, it may not be very nutritious, but it's great for soaking stuff up in your belly.
The next day I was treated to heartburn and recurrent hiccups, so I was experimenting to see what I could eat and drink without getting heartburn. I made the mistake of having a "chili with beans" version of the venerable "cup o' noodles", which turned out to be just a bit too spicy for comfort. Several glasses of chocolate milk abated the pain, and settled nicely. Fluids are a problem now, and I'll probably be going with a lot more milk than usual. My primary fluid intake is typically diet soda, which consists of little more than carbonated water and some chemical flavorings. I probably drink about ten of those a day, but now they make the heartburn worse so I have to switch to something non carbonated, I think.
A word about the diet soda - since I drink a lot of soda, and a while back I was concerned because I discovered that I'd topped the dreaded one-eighth ton mark (I was up to 262 pounds), I switched to diet soda and immediately dropped about twenty pounds. Of course, I also laid off the chips ahoys too, I'm sure that helped, but knocking 1400 - 1600 calories a day out of my diet didn't hurt any. I found that I liked the walmart copy of diet dr pepper, and at $1.75 a twelve pack, it was cheaper too.
Last year, at the beginning of july, I was down to about 220, but now I'm running in the low 230's. That's a pretty good weight for me, I've still got some noticeable fat on me but I've put on some more muscle as well from doing work around the four and a half acres I've got here, so I guess it's ok.
Looks like I'll probably be losing some weight from the chemotherapy and what it's going to do to my appetite, so I'll have to keep up my protein intake. I may have to develop some modified foods to account for the heartburm problem as well as some other possible side effects (they tell me sores may develop in my mouth, and if they do, that they'll be duplicated throughout my digestive tract - oh boy!). If that happens I may have to do a pureed combination of regular food and antacids, so it goes through smooth (not rough) and has a buffer.
Another thing about those people at the Cancer Center, they aren't shy about handing out prescriptions. They started me off with some compazine or something - an antinausea med, and a rather large prescription for vicodin, a synthetic opiate pain reliever. I'm familiar with that one, having had quite a few of them after a nasty car wreck back in '97 that racked up my ribs. I've had some of those today, and I tend to get a bit wordy when I'm taking them, so that's probably why I'm going on like this right now.
In any event, I'm just starting to find out about the unpleasantries of chemotherapy, and they may alter the program depending on what they find when they pull out some bone marrow. Currently, the program is four months of chemo and then the radiation therapy, and I guess I'll know within the next week or two if all my hair is going to fall out.
More will follow when I feel like it.
Well, I've been in for the bone marrow biopsy. From the nurse's descrption of what they were doing, it was supposed to hurt quite a bit. (They used words like "pinch" and the like - anyone who's had some contact with doctors and pain knows that that translates to "hurt quite a bit". When I filleted my little finger years ago, the doc told me "Ok, this is going to hurt" when he was injecting the wound. Well, it did, quite a bit, but he said I was doing pretty good since I wasn't rolling around screaming.)
Actually, beyond the lidocaine injection right at the start, it didn't really hurt at all, just something that really did only feel like pressure when he was twisting the coring tool into my pelvis. Guess I just lucked out on that one and he didn't hit any nerves.
I haven't heard about the results from that yet, but when we asked about it being a bilateral (both sides, as we'd originally been told) he said "No, it's going to be negative anyway, so we'll just do one side".
So much the better for me.
I've just been in for the second round of chemotherapy. No leftover buzz this time, just a downhill slide from feeling ok to feeling like crap. Oh, and a headache now too. I guess I shouldn't complain, it really hasn't been all that bad compared to the old days. Twenty years ago a cancer diagnosis was a virtual death sentence, and chemotherapy wasn't much better. Now, it seems that I have about as much a chance of dying from this as I would of dying from the flu, it's just that the required medications are much harsher.
I did get an explanation of what my blood counts mean today, and it seems that the counts from before I started chemo are something to be envious of. Even now, though my counts are down almost 70%, I'm still just below the bottom of the stated "normal" range. Unfortunately this indicates that my immune system is taking a rather large hit from the chemotherapy, and todays round will drive that even lower.
So, I've got to be really careful about infections. Normally, if I get some superficial damage, it bleeds a bit, then seals up and heals in a few days. I normally don't worry much about infection (provided the would isn't actually filled with dirt) because a) I normally don't *have to*, and b) I normally allow a certain amount of dirt, manure, etc, to enter my system so that I'm innoculated against all the local "bugs". This provides me with one heck of an active and experienced immune system, and I can shrug off most things.
Unfortunately, now it's severely compromised. I'll go back in a week and they'll check the counts again and if it's dropped again, which it probably will be, they have something to give me that'll help boost the counts.
In the mean time, I have to be much more careful than usual about infections. I cut myself last week and worried about that briefly, then remembered that silver salts are antibiotic, and since I cut it on sliver sheet I just forgot about it. It didn't even get red, let alone swell. Good for me.
Ok, off until the next chapter...
Well, the monday after the second round of chemo and there's a new development: My hair's falling out. They'd said that I'd probably know if it was going to go within about ten days, but this just took a little longer.
I've got pretty long hair to begin with, and I usually keep it tied back into a ponytail with one of those thread covered rubber-band type hair dealies. Well, I was pulling that off before taking a shower on monday morning and it seemed like that was a bit more hair stuck to it than usual, so I ran one hand through the back to see what else was going to go. What came out was a pretty good sized handful. I called my wife in to see it, and then took my shower, half expecting to be bald when I got out. I wasn't, but there was a pretty fair coating of hair on the mat, and I was having trouble combing it afterward because it was still coming loose.
Here's a pic from the rio rondo site of me and the goofy mare "Lil"
As you can see, my hair is fairly long in the picture. I haven't cut it in about ten years, but it seems to have found a length that it more or less stays at (depending on how much of it is falling out just due to age). Looking at this picture, I'd say that as of right this moment, I've got maybe half of it left, maybe two thirds. I don't think that's going to last, since if I pull on it it'll pretty much come right out, and there's lots more chemo left ahead of me.
I don't relish losing all the hair, because it'll take a long time to grow it all back, and because I have kind of a lumpy head. I'm also hoping that it won't all come back in white. I've been showing grey at my temples since I was in my twenties, and it's spread in the intervening years, but I was only recently starting to develop the "salt & pepper" thing across the front. Oh Well. =8P
Regarding the lumpy head, well, seems to me I've been hit in the head a lot over the years, particularly when I was younger. I'm familiar with the lumps and dents, but they don't normally show, so I don't know exactly how that's going to look if they're uncovered and obvious. If it all does fall out, then maybe the docs will be able to figure out what the one annoying lump I've had for twenty years or so actually is. In the past, they could never even find it, and since that was usually at an HMO, they never did anything more than shine a light at it anyway.
With fall here and winter coming, I'll probably have a problem with my head getting cold, especially if all the hair goes. (If there's just a few long tufts left I'll be mowing those off too) My standard cap won't cover enough, so I've started considering various methods of covering my skull. The one that seems most useful involves one of the various leathers available to me. Say, a piece of suede sewn to fit over the top of my head where my hair would normally be, with a big flap going down to about collar length in the back. I have access to a number of different kinds of skins, like suedes, top grains, and even hair-ons, so I suppose it's possible to take that idea off into the ridiculous. Black cabretta? Red cabretta? Hair-on deer? (that might actually be kinda cool) Hair-on cow? There's a lot of skunks around here, if I knew more about tanning (and how to eliminate any smell) I'd probably go with something like that - lush black/white fur, distinctive pattern...
Anyway, I guess I'll just have to wait and see what happens
Well, I'm pretty pleased with myself today, particularly with my resilience. If you've read the stuff above you know that my blood counts were way down after the first round of chemo, and now, a week after the second of the scheduled eight, it was expected that my counts would be down even further and that I would need some blood enhancing injections. Well, my counts were actually UP! Evidently they were up quite a bit as the nurses acted pretty surprised. When they asked how I did this, I just replied "Sheer Force of Will". That's really all I did, just be determined that I was going to be tougher than whatever was thrown at me. I did eat a lot more macadamia nut/chocolate cookies than I normally do, but that's about the only change from my usual "eat some of everything" regimen.
Like I've said, I've been poisoned before, and it looks like I can adapt to that on an ongoing basis. Let's just hope that the cancer doesn't adapt quite as well...
My hair is still coming out, at least half of it is gone now. I've been using this as an opportunity to make jokes about it - I'll say "Hey, want some hair?" and reach up and pull out a big wad of it. This is definitely something that you don't normally see and it gets a lot of raised eyebrows even though the victim already knows what's going on. Carol told Kenda (our warehouse girl) that I was going to look scary nekkid, meaning bald, of course, and I was laughing because I could see by Kenda's expression that the picture in her head wasn't just of me being bald.
Anyway, I don't have a complete understanding of the counts, but the one that was down to 3.3 from 10.5 was back up to 3.9 (4.0 is the bottom of the "normal" range), and the one that they don't like to see under 1,000 (where was that, 880?) was up to 1,800. I still feel like crap most of the time and tire very easily, but it looks like I'm holding up very well. Hey, it takes a lot of power to be a dragon killer.
Well, another round of chemo on friday, and I think this one hit me harder than the previous ones. It also might have been because I went and overexerted myself several times during the weekend, but whatever, it's Tuesday night now and I'm heading back to a reasonable physical level. I got an industrial engraving machine delivered on saturday night, and moving that around and assembling it was one of my major overexertions, but I'm very happy to have one of my very own after having used them for about eight years.
My blood counts are back down again, and while I have no idea why they'd be up at the midpoint between treatments and down again a week later, the nurses are unsurprised. What they do seem surprised at is the fact that I still have any hair on me at all. Evidently they expected that I'd be quite bald all over by now, but I've still got enough hair on my head to qualify as hair, most all of my facial hair, and while the hair on my arms has never been thick, it's still mostly there. There's still a lot of chemo to go, so I still expect to be bald all over at some point.
The nurses do comment that I look *really* good. I'd say that's a good sign.
For anyone that's reading this because they're going through the same thing (or expecting to), I can't say that anything I've done has kept my hair on or my blood counts up, but I can tell you what I have or haven't done in case it'll help you. I haven't gone to bed any earlier than usual, I still stay up a lot later than I should. I do take more naps than usual, and there'll be times when you find that just taking the trash out has taken everything out of you. Go ahead, take a nap, it helps a bit. Taking the vicodin (hydrocodone) in small increments (2.5mg for me) irregularly, when I feel like I need to, will do a lot to cut through the crap and allow you to do more. You'll still get tired really easy, but you won't feel so bone-tired and drained. I do take a handful of vitamins, including several hundred units of E and five or more lecithin caps. I've been taking the lecithin caps for years, usually about seven a day, and I find them to be like octane booster for my brain. I understand they're a favorite of medical and law students for just that reason. I've also been eating a lot of macadamia nut/white chocolate chip cookies that my wife has made, I don't know if they help, but the calories have helped keep me from losing weight and come in handy when I'd otherwise be worn out. I know these things aren't much, and they may not have a single thing to do with any of it, I'm just noting what I've done in case it might help somebody else. One last endorsement though, and that's for Carnation Instant Breakfast. It's probably the best way to get a bunch of nutrients into your system without the trouble of eating a real meal, especially when you don't feel like anything that goes in your belly is going to stay there.
I'd also have to recommend against any alcohol. I do think that one of the reasons that I've fared so well in this is that I very seldom drink anymore, so my system hasn't been regularly burdened by that socially acceptable nerve toxin. This is not to say that I never drink, I'm not shy about that, it's just a rare thing anymore.
Ok, I've noticed that this might be getting boring, what with the blood counts and vitamins and stuff, so I'll point out a couple of other things...
You may recall from above the remarks I made about things giving me gas. Well, I've had a National Class case of gas off and on, most especially right after a round of chemo. After friday's round, I went to the farm store, farted a lot and bought some brass rod ("hey, who let a dog in here?"). I've found that if the cats are attacking each other in the living room, a hearty release will startle them and they'll stop and look to see what that noise was. One thing I've taken up as a standard joke is, when I find I must release while walking across the room, I'll wave my hand behind me and comment to my wife, "there goes more of that cancer".
Ok, I know, more toilet humor, but it's about all I've got to work with right now. Um, well, I have commented regarding my thinning hair, that when I take a shower the floor looks like we shaved a dog in there, but I know that a lot of people facing this won't find that partcularly funny. Don't despair, I understand it all comes back.
Ok, that's probably enough for now...
Ok, it's been a while since I've updated this, mostly because I've either felt like crap or because I've been using what meager energy I have to: A. Try to Work (hey, no laughing!), B. Make tooling for my engraving machine (stuff for that thing is amazingly expensive), or C. Other exhausting stuff, like going outside, reading catalogs, and buying crap on ebay (again, mostly for the engraving machine). Oh! The humanity! 8P
By the way, as I write this, it's Tuesday, January second, 2001, so here's a smiley of me with a santa hat on: *<8D
Ok, anyway, since the last installment, there's been some other developments, some not so good, some just mediocre. It seems like every week has brought interesting new things into my life.
First off, my blood counts were way down and they decided that I neded "bone marrow boosters". The really fun part of bone marrow boosters is the fact that I do the injections myself, at home. Yeah, that's what I figured you'd think. Actually, they aren't too bad, it's a subcutaneous injection (into the fat under the skin) and all I really have to do is get the stuff out of the bottle and into the syringe with the *big* needle, and then into my leg with the *small* needle. It's pretty obvious which one is which, so that's not a problem (except this last batch of small needles seemed a little dull). The first one was some kind of steroid/hormone (that's what they told me, anyway), and there was only about one cc in the bottle, no problem at all until I developed a slight reaction to it (small rash near the injection site). They switched me to a different one, and I haven't yet had any problems with it even though it's about one and a half cc's and it kinda stings going in. The real kicker for the boosters is the fact that they make your *bones* hurt, mostly on the inside where the marrow is. Yeah, that's great fun as a lead-in for chemo at the end of the week. Anyway, other than the sore back, sternum, pelvis, etc., I guess it's not all that bad. Trust me, it's nowhere near as bad as the stinking chemo.
Well, the boosters worked pretty well at first, but after they switched me to the other ones my white counts went up to about two and a half times normal. They were wondering if I had an infection or something at first, but evidently that's a normal effect of the second one - no wonder my bones hurt.
I was over at the bar the other night looking for a pack of smokes, and I was talking to a couple of the local guys I know, and they hadn't heard that I have cancer. I took off my hat and showed them what was left of my hair, told them about a couple of things, and mentioned that I was injecting myself with the bone marrow boosters and that they made my bones hurt. One of them was flabbergasted, and asked me how I could *do* that! I told him it was simple, just into the fat on my leg, and he said "Oh! Oh!, I thought you were injecting your *BONES*, and I thought man, this guy's TOUGH!"
I told the nurses about that, they laughed and said I *was* tough, but I don't know if that referred to the fact that I still have some hair, that I don't complain much when they're fishing around in my arm for a vein, or that I just keep coming back for more without complaining about the chemo. I just figure that, since they say they're going to cure me, that I don't have all that much to complain about.
Another nifty development was a painful swelling on the inside of my upper left arm. It was sore enough just on the surface of the skin to keep me from sleeping (and I don't actually sleep, I'm just temporarily dead) so I went in and after a quick look they diagnosed it as phlebitis. I haven't looked it up, I'd just rather it went away. I got a bottle of keflex and took those as prescribed, and it faded, but now that I'm finished with those, it seems to be coming back. I'll be picking up a fresh bottle of the keflex and we'll see what happens then.
I really don't like the antibiotics I've had during this. The first one (levaquin) carried the possibility of some nasty side effects, but considering I already felt like crap, I don't know that it was making me feel worse. The keflex made me feel like crap, but I may have a slight sensitivity to penicillin, which might be the source of that. Oh well, by the time this is over, I ought to be pretty damn infection-free.
Well, aside from the newfound joy of injecting myself the first three days of every other week (bumping up the counts before chemo), and the stupid phlebitis (ok, I looked it up, it's generally an inflammation of a vein, more specifically related to a clot within a vein [not sure what the antibiotics would do for that] and generally less serious when it's near the surface. No doubt related to the chemo, and the clot aspect would be why they told me not to rub or scratch it), there's always the stupid chemo. I had one really good week, when I was back in pretty good shape by the Tuesday after the treatment, but the following one knocked the crap out of me again. This last one finally made me nauseous enough that I had some trouble eating, and the compazine (anti-nausea) doesn't do much for me. But, I've only got one more round of chemo scheduled, and then I'm supposed to be done with that. The Oncologist tells me the radiation treatments that will follow aren't nearly as bad as the chemo, so I'm hoping to be able to start working my way back up to normal. The problem I see for radiation right now is the fact that I'll have to drag my ass off to town five days a week for two months. I just hope I'll be able to arrange for a reasonable schedule, and not one in the middle of the day.
Anyway, I've still got a little bit of hair left, but at this point it's just an annoyance - I need to cut it off. There's a little bit of stubble growing on top of my head, but I think that's just a false start. My eyebrows are about three quarters gone, as is my beard. I had been thinking about just shaving my entire head, but my wife didn't like the idea, so I haven't done anything yet. When I say that my hair is little more than an annoyance, I mean it's a little less annoying than say, eighteen inch long armpit hair - that's about how thick what's left is (if you don't have a lot of pit-hair) and that's how long it was before it started dropping out. It's going to be a long cold road back to long hair.
Anyway, I'll just continue with the quadruple espressos and half-tabs of vicodin, and I'll manage to get through the next month. At that point, the last episode of chemo should be wearing off and I should be into the radiation part (which, of course, I'll describe in annoyance), and eventually I'll be done with that and will be hoping that they'll call me "cured". As a point of reference, they only call it "remission" until you've tested negative for a period of years, and then call it "cured", but as long as I don't have to do this again I won't care what it's called. I don't like this at all.
On a more serious / less serious note, I should relate something else...
When I went in about my sore arm, the doctor referred to me as "the miracle guy". I didn't understand what this meant, so I asked a couple of times ("What's miraculous about me?"). She finally told me that the first doctor (surgeon?) that looked at my films exclaimed "Oh, shit! This guy's got oat cell, he's got about two weeks!"
Given how rapidly everything seemed to have progressed (three days from ok to messed up) it probably wasn't surprising. But's as I've said, I'm not that easy to kill. So, of course, I've made a joke out of it:
"They only gave me two weeks to live, but they didn't tell ME that until months later"
Yeah, I know, real funny. You'd hafta be here, I guess. My wife doesn't like most of the jokes I've made about it, but hey! I'm still here! Now, if only my damn arm would quit hurting.
We did get a nice snow for christmas, just enough to coat everything and make it nice for new years too. (I went outside for a little while and tossed waterproof firecrackers into the snow, not too terribly tiring, except for the cold..)
Ok, I think that covers it for now, more will appear eventually...
Well, I've finished the last scheduled chemo treatment. When I'd sucked down the last drop of poison, the Chemo Nurses all came in and sang "Happy Last Treatment To You". My wife says I just sat there and looked at them, but I thought I was smiling. I was quite amused, but I was also freshly poisoned, so it may not have come out.
My arm got better, but I've developed another dorked up spot, this one is smaller though, and down on my forearm where one of the first treatments went in. I expect it'll get better as well.
I also finally shaved my head. The remaining wisps were down to the point where they were just an annoyance, and there was some stubble under them of hair trying to grow despite the chemo. I had considered just clearing off my whole head, eyebrows, beard, and all, but others objected. It's not as if there's much left of them anyway, it wouldn't have been much of a job.
Being completely bald is weird. Not recognizing the guy in the mirror is even weirder, but either I'll get used to him or he'll start looking more like me again after a while. My hat blows off really easy now, there isn't much to hold it on. If the wind is blowing hard, I have to cinch it up really tight to keep it from taking flight. I usually forget that I've done this, and then wonder why I'm developing a headache.
Ok, so it's been a while. For those of you who've been following along, this would be a double update including the section above.
Well, three weeks out of chemo and I was feeling pretty good. That is, in comparison to how I felt during chemo, which could be described as "Hammered Duck Shit". I could pick stuff up and walk around with it, move things, go up and down the stairs more than twice, and all without having to stop and act dead for any length of time. Actually, I'm a little excited, you might be too if you'd been told that every day for the next six months or so you'd be a little stronger and feel a little bit better. At least I get to have a long upswing to contrast the usual battering of time and gravity.
Anyway, after about three weeks of no chemo, I've started the radiation. I wasn't sure what to expect, all I'd been told was that it'd make me "really tired", but that it wouldn't be nearly as bad as the chemo. So great, just what I needed, to spend another month feeling badly worn down.
The radiation specialist, well, let's just say that he didn't inspire a great deal of confidence. One of my basic tests of people is to see if they attempt to pass me off as an ignorant idiot, if they do it usually indicates that they're in that category themselves. He didn't exactly pass that one, but the fact that I live in the town that I do is kind of a ringer. Hey, I didn't live my *whole life* there, dumbass! I was afraid he was going to cripple me ("The parts of your lungs that get irradiated won't work anymore" - "Hey! Wait a minute!") but I ended up with a bit more confidence in the various techs that work for him, especially after we ascertained that the lung loss will be down in the 4 - 5% range. I think I can adapt to that. Besides, I've done better with this so far than had been expected, even beyond the fact that I continue to be alive.
I had a post-chemo cat scan, and when I saw the oncologist to discuss the results he said that he didn't usually get radiologist's reports that said "Dramatic Improvement". I asked if he was making an illustrative example or talking about mine, and he said "I'm talking about yours".
Here's what it said: (hopefully your browser will accept the formatting)
CT CHEST AND CT OF THE ABDOMEN The patient has known lymphoma.
The CT of the chest shows dramatic change and dramatic improvement since
9/14/00. The large right peritracheal mediastinal mass has disappeared and I
do not see any mediastinal masses at all at this time. The lung parenchyma look
normal and I do not see any pleural effusion and no axillary masses are seen.
IMPRESSION: DRAMATIC IMPROVEMENT.
THE CT OF THE CHEST IS NOW BACK TO NORMAL.
The CT of the abdomen shows no change in the hemangioma in the posterior
aspect of the right lobe of the liver since the previous study. This is of no
significance. The exam otherwise is normal when allowing for the fact that the
lower half of the inferior vena cava is to the left of the aorta, rather than vice
versa, although the upper more superior aspect of the vena cava is to the right
of the aorta in a normal position. I do not see any periaortic lymphadenopathy
when allowing for this fact.It is important not to confuse the left sided
vena cava to the left of the lower aorta with a lymph node.
The exam otherwise is normal.
1. THE CT OF THE CHEST SHOWS DRAMATIC IMPROVEMENT AND THE CT OF THE
CHEST IS NOW ESSENTIALLY NORMAL.
2. THE CT OF THE ABDOMEN REAINS NORMAL WHEN ALLOWING FOR THE
HEMANGIOMA IN THE POSTERIOR RIGHT LOBE OF THE LIVER AND WHEN ALLOWING
FOR THE FACT THAT THE LOWER VENA CAVA IS TO THE LEFT OF THE AORTA.
I SEE NO EVIDENCE OF RECURRENT OR RESIDUAL LYMPHOMA
Ok, so it's gone. I'd say that's a pretty damn good result. There seems to be some irregularity in the arrangement of the big pipes on the top of my heart, but they don't seem to be a problem. The doc mentioned that there isn't even any scar tissue, and that that's kind of unusual, and he was quite pleased (me too!)
So, converted it all to gas, right? (Remember, I said I had a world class case of gas?)
Ok, back to the radiation.
The techs drew on me with purple markers and tattooed a little purple spot in the middle of my chest, and after doing a lot of setup and checking, gave me what amounts to a really long xray, one from the top and one from underneath. This would be to kill off any residual cells that might have been left behind by the receding mass. I'll be having one of these five days a week for a month.
I still feel ok, although that first treatment left me feeling a little like something big had stepped on my chest. But, once I get a small dose of the vicodin and the usual big dose of caffeine in me, I'm pretty much ok for half a day. A duplicate dose of both will get me through the end, though I'm kinda burnt at the end of the day. I just have to remember to sleep a lot. I've only had three treatments so far and I can feel the effects already, so if you call up and I answer the phone and I sound a bit rough, that's probably why.
It's supposed to tear up my throat a bit, as well as dorking up my blood counts again, but I've got experience with injecting the neupogen now so that shouldn't be a problem.
I'll write more again sooner or later, probably to bitch about the general effects of the radiation treatments, but I'm hoping the weather will warm up a bit so I can go play with the horses some soon. I had two+ feet of snow drifted up in my driveway last week and it got me way behind at work. Now it's mostly turned to ice and it's bloody cold out there all the time. Please try to bear with me.
Ok, so it's been a terribly long time since I made an update.
The radiation finished out with various difficulties, such as the power going out and the machinery's cooling system freezing up, the water leaking out of it, roads coated with ice, and various other dumbness. But, I finished it. About a week and a half into it my voice started going, and for a couple of weeks it was off and on. The upper half of my vocal range went for a long time, and I'd thought it was permanently gone, but I seem to have most of it back now.
I was kind of pissed at the time, I'd asked the guy in charge what it was going to do to my voice and he said "we'll see". What he should have told me was that about seventy percent of the people undergoing these treatments lose their voices completely for a period of weeks. Since I answer the phones at work, this could be a problem. However, I was able to tell fairly well when I wasn't going to be able to talk, and could usually get somebody else to answer the phone. Also, the problems with the machine not working would give me the occasional day to heal up a little and I was able to speak most of the time.
The "stepped on" part of the radiation kind of killed the post-chemo rush of health, but I kept feeling better and better.
Once everything was over, I had determined that I was going to be better than I was before. Most people take this to mean that I was going to be "nicer" than before, but that wasn't my intention at all. What I wanted was to be stronger than before, and to get more things done.
So, one of the first problems I started taking care of was rough feed for the two cows. We'd run out of alfalfa, but there was a lot of grass growing outside their pen (I can't let them graze, because my perimeter fence isn't very good and the half-longhorn steer calf, "Baby", will either pop right over it or just shove his way through - there's cornfield on the other side), So every day after work I'd get the weedeater out and go cut and rake a big pile for them to eat. I was sore as hell every day, but it slowly got easier, and every day I'd cut and rake a little more. Every day I'd be less sore in the morning, except for one point where I was getting more sore every day and had to lay off a little bit.
Eventually the weather started warming up, and then just got plain hot, but by that time I was getting pretty used to it and eventually found that I could cut and rake endlessly in 105 degree heat. When I'd finally cut (and re-cut) about a quarter of an acre of grass and weeds and taken all the really useful forage, I started mowing up the back pasture. I'd mow large sections of that and pile up the grass, and go out every day and rake up a pile, pile it up on the wheelbarrow, and walk it back to the pen.
The cows eventually figured out that the weedeater meant fresh stuff to eat and would get all excited if they heard it running.
We switched back to alfalfa once the grass was mostly eaten or dried up.
Then, I had a horse coming, so I had to fix up an enclosure and build a shelter.
Not being one to build flimsy things, and taking into considering the fact that in the short time I've been here there's been rain driven by eighty (80) mile an hour winds, which, by the way, is *real* interesting, I decided that the best thing to use for fence posts would be used power poles. I'd seen some over in the equipment yard at the power company over in Ulysses, so I tried calling the local power company. No go. In fact, I couldn't even get through to them, all I could get was some national office in another state. So, a few phone calls to Ulysses and I found that they were happy to have the used poles taken away, as long as I took the whole things and didn't leave a mess.
With a one ton diesel truck, a big horse trailer, a chainsaw, hand truck, hammers and crowbars and assorted other tools and equipment, off we went to the pole yard. I also "harvested" poles that were down in local areas, and when some poles were removed in my town I asked the crew if they'd dump the used ones in my yard. They were happy to, I guess it was easier than what they would otherwise have had to do with them.
I brought home a big pile of eight foot sections of power pole, ranging from six to ten inches in diameter. Boy, are those things heavy! I had to take a rest a number of times over at the yard, because while I may have looked ok, I really wasn't quite up to speed yet.
With the poles in the pasture, I started digging holes.
Now, what I had was an area of a little over four tenths of an acre that was closed on three sides, and the open side was 135 feet. I got sixteen foot wire cattle panels, and laid the posts in at eight foot intervals.
So, I did some careful measuring, and located the place where the post should go out at the perimeter fence, cut the fence, and started digging. Well, that was interesting. The top six or eight inches was pretty reasonable, and then it just got plain hard. Even the crew that was replacing the poles complained that the ground was hard, and they had huge power equipment to do the digging. So, the shovel worked ok for a minute or two, then I had to use the "post hole helper", which is a five and a half foot iron bar with a blade at one end and a flat tamper at the other. You get the hole started, then use the blade to chip away at the bottom, fish out the chips by hand, then chip some more. the bar doesn't seem all that heave at first, but after an hour or so it wears on you.
I eventually got that hole dug, two feet deep, and got the fat post set into it. Then I got everything well tamped in around it so it was good and solid, and got the perimeter fence reattached to it and tensioned up. Then I looked at the distance between where I was and where the other end of the new fence would be. I don't remember exactly how many posts there are, but I figured that, since it had taken over four hours of hard labor to install one, that it would take months of hard weekend labor to get the rest in if I didn't do anything else. Time for a power tool.
I found a good price on a gas posthole digger, choosing gas over electric because the truck is an old beater and I'd eventually have to work on the fence behind the trees where the truck wouldn't fit.
The gas auger was fantastic, but it would still go about six inches deep and skate across the hard soil, so I still had to use the "helper", but it did greatly speed the digging, and I was able to get all the holes dug fairly quickly. Incidentally, filling the holes with water helped on some, but on others the water would still be sitting there after a week. I selected the poles and rolled them out, stuck them in the holes, and started tamping. That was another "growth" experience, and after lifting that heavy rod and slamming it down into the holes to tighten up the dirt several thousand times, I found that my clothes no longer fit right. The fact was, I'd grown some new muscles where I hadn't had them before, and by then working the rod didn't tire me out anymore.
I got the fence panels up and had the horse delivered, but didn't have gates up yet, so I led her in through an open part and put up a fence panel and sealed her in. I got a gate the next week and got that in, and then another the following week for the other end, which gave me a spot big enough to drive the truck through. Then I started on the shelter.
I built the shelter with the thicker poles, all also set two feet into the ground, and used ten foot sections of twelve inch diameter pole for the three front posts and eight foot by eight inch sections for the back. Those where some big holes, and quite a bit of work. And, ten foot long pieces of power pole, a foot in diameter, all soaked with creosote, weigh a ton, especially when you're muscling them around with no help. But, I was able to roll them into position, get the end picked up, and then tip them up on end to drop them into the holes. Got them leveled up and tamped in, and then pulled the truck in between them and chainsawed the tops all level with each other. Then I chainsawed notches into the tops about as wide as my hand and about as deep, to accommodate the next step. I took a couple more sections about ten inches in diameter and notched out the sides of each end, so there were square sections that would fit into the notches at the tops of the upright posts, rolled them up onto the truck, and managed to lift them up on top. I tried a number of times, but the things were just too heavy for me to pick up over my head, so I had to lift one end up, tie it up with a rope, lift the other end up onto the top, then lift the first end the rest of the way up. Fortunately I'd gauged the joint well and everything went snugly into place.
Rather than describe the rest of the process, I'll just point out that almost all of the structure was jointed together pretty solidly (with chainsaw, hammer, and chisel) and is securely set into the ground. Any attempt at removal will require heavy equipment.
I assume that the local guys were probably up in the grain elevator watching me much of the time, and one of them asked my wife where I learned to do that. She told him I was making it up as I went along, which is true. He said he was impressed with the structure.
As I mentioned, we've had eighty mile an hour winds, and I'm on the edge of town with no windbreak, so I figured I'd better build it for ninety mile an hour winds. We've had some pretty heavy winds since I finished it, and just this past week we had constant fifty plus with gusts into the sixties, and there isn't a loose spot on it, so I guess it's ok so far.
At some other point before the weather turned cold I spent a few weeks out in the tree line, pulling out deadfall. I pushed myself there as well, opting to drag the deads out whole, by hand. If I could move it at all, I'd drag the things out. Lots of it was right at the limits of my abilities, and there were a couple of times I thought I might actually pass out, but it was all working with my goal of being stronger than ever.
Once I got the trees out, I'd stand them up, then pick them up and throw them up on top of the big pile I've accumulated. It gets hard to get them up there when it's more than ten or twelve feet high, but they scrunch down after a few days. There's a couple that were just too heavy to do that with and I'll have to cut them, but the biggest problem was balancing them in the wind.
So, anyway, here I am. All that physical labor got me a bunch of new muscle bulk and definition, especially in my arms and shoulders, as well as a lot more general strength, which was part of my goal. I thing there was a point in the rebound period where I was above my normal baseline, and I think I put it to good use, and that I'm past it now.
I got through the chemo, and the radiation, which all in all really sucked but weren't what I'd call terrible-awful-bad, just really, really crappy. I suppose that distinction makes more sense to somebody who's been through it, and I just don't think about it much now.
My hair all grew back, but grew back different than it was before. I used to have some pretty pronounced grey (silver) temples, but those came back mostly brown. However, there's an odd shaped spot left of center and about an inch back from my hairline, about an inch and a half across, that's plain white. It was more obvious when it was first growing out, but my hair's about six inches long now and it's not so noticeable. Doesn't matter, I thought it was an interesting effect.
When it was first growing back, it was coming in the wrong color, a weird faded sort of brown. That must have just been the dazed follicles, because it eventually darkened to a more normal color.
The grey on my chin goes all the way across now, but I knew that was going to happen eventually so it's no surprise. It seems that I didn't actually lose the grey, it just got redistributed. But, I started showing strands of grey when I was in my early twenties, and it doesn't bother me.
When it did start filling in, it was growing in thicker than it was. I used to have a lot more hair than I do these days, and it's thinned quite a bit over the years (and grows a lot slower too). I wondered if it was going to be really thick again, but that's thinned out to a more normal level. Actually, I'm kind of glad that the extra hair thinned out again, because that wasn't the only place it was coming in thicker than it used to be, most notably on my butt. Now, this might seem silly, but I've never been a particularly hairy man, and the situation arose where I wondered how I got this long hair stuck to my ass, and then realized that it wasn't stuck to it, it was *growing out of it*! Hmm. I wondered if that was going to become an annoyance, but either it's fallen out or I've stopped noticing that it's there.
I'm just happy to have my eyebrows back, I missed those most of all.
The radiation treatments went high enough that they killed off the hair that grows down my neck, both front and back, and the tech indicated that it probably wouldn't come back. This was fine with me, because it would mean that I wouldn't have to trim my neck anymore and the back of my neck would stay neatly trimmed. Well, it did eventually come back, oh well...
I would have been perfectly fine with the pubes not coming back, I'd gotten used to that, but, well, nevermind.
So anyway, I suppose I'm recovered. I'm not quite the same as I was before this started, but the difference are hard to quantify. In some ways I may be better, in some I may not, but I'm less tolerant than ever with people who waste my time - it's time I might not have had, and I don't appreciate it being frittered away by others. Remember the thing about the two weeks...
I know this page gets a number of hits from people searching for information on Hodgkin's Disease. I've gotten a few emails from people who are, or may be, faced with a similar diagnosis, and they've found this long drawn out thing to be at least minimally reassuring. If that's why you're here, I hope that you do as well. I've been out of treatment for about a year now, I've had periodic followup scans and x-rays, all clean, and the oncologist has now switched me over to six-month followups. I feel good, I look good, and I'm tougher than ever.
When I was first diagnosed, I went looking on the net for information. What I found was either clinical/technical information, or these whiny "poor-me, look what terrible thing happened to me" pages. I found them to be depressing, and disgustingly so. So, since I had the need to spew about it anyway, the time to do so (since most of my physical energy was sapped), and since the vicodin makes me wordy, I started writing this thing. At first I didn't intend it for public consumption, but it wasn't very long before I decided I should get it up on the site, if for no other reason than an explanation as to what was slowing down production at my job.
So, for those of you who have been following along because this was an interesting and more personal look at cancer, I hope this update is sufficient (I've been getting requests for ten months).
And for those of you who found this because you or one of yours is faced with it or something similar, I hope this has been a bit of light for you. I remember when a diagnosis of cancer was a virtual death sentence, but it is no longer. There's currently no magical Cure for every kind, but they can do quite a bit about a lot of them, and they can pretty much cure some of them. For Hodgkins, after two to five years of remission, they call you cured. And they've got a 95+% rate on that.
As you have seen, it is typical of me to look for the dark side of something, and then make jokes about it. When faced with the dark, it's a good attitude to have, take it up if you can.
If you have to deal with something like this, and you might like some advice, I would offer this:
Don't whine. To do so is to lower yourself and weaken your resolve. Take it to yourself and own it; next to this, other difficulties will seem trivial.
Attend to your needs. Eat what you can eat, drink plenty of icewater. Remember that bagels are a good buffer food. Sleep when you need to (or can) but don't do too much of it.
Keep moving. The longer you lay down, the harder it is to get up. It's bad for your bowels too.
Be nice to the chemo nurses. Their job must be terribly hard and they're really not trying to hurt you. Help them if you can - know where your good veins are.
Defy. Assume victory, not defeat. Plan to win and accept the costs, whatever they may be. Yours is not the hardest road.
Live anyway. You're not dead yet, don't act like it.
I may add to this list, but for me, it boiled down to a simple statement:
Go ahead, say it. With rage and defiance.
I'll close this piece for now, but I plan to leave it up and available for anyone it might be helpful to.
Thanks for reading so long.
Gary G. Deal
No, I don't necessarily proofread all this before I post it...
New counter added 9/19/06
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This narrative is intended to be used for the benefit of others. While copyrighted, reproduction and distribution is expressly allowed and encouraged. Print it out and give it to Chemo Nurses, Oncologists, General Practitioners, people with cancer (especially Hodgkins), family members, friends, religious leaders, or anyone else who might benefit from reading it. Please. I would have felt better if I'd found something like this, and I hope it's been of benefit to you.
If you wish to publish this piece, in part or in whole, please contact me beforehand.