Patrick's Story

A Little More Progress and a mystery

2010-11-13T23:40:00.000-08:00

I am scheduled for another checkup in early December but thought I would do another summery now, as December is looking rather busy. Everything looked normal at my August checkup, including my MRI, so not really anything to report about that.

Weight: My normal weight used to be over my desired weight, so these days I'm a little better than normal and working hard on establishing a new normal. Weight is no longer a radiation or cancer issue. The task of holding to my desired current weight is made more difficult by my recovered sense of taste, as reported in the next entry.

Taste: In the last post I thought I was pretty much recovered except for a slightly muted taste and accompanying muted desire for my favorite foods. Well, now the muted part is completely gone and everything tastes as I remember, with all the same old issues to be dealt with such as enjoying a great meal and even though I'm getting full, emptying my plate anyway just because it's so good. Chocolate is back to being chocolate, which I now only allow myself in small doses, strictly for medicinal purposes of course. So I'm saying that taste is no longer an issue.

Mouth and throat: I still experience slight "dry mouth" symptoms and probably always will, so I just accept that and either deal with it or ignore it, as the situation warrants.

Skin: The skin on my left neck and shoulder felt somehow different at the time of my last post but I now think it was simply still healing, as the difference is now much harder to detect. The left side seems just a tad less sensitive than the right side. I'm guessing there will be no difference by the time another four or eight months have gone by.

Hair: There is no longer any trace of the radiation hair loss on the back of my head.

The Mystery: It was shortly after the August MRI that I rather suddenly developed the symptoms of L ’Hermitte’s Sign which is the occurrence of a tingling buzzing feeling in the lower small of my back, rather well expressed as feeling like I am receiving a slight electric shock. This occurs fairly often when I bend my head forward, bringing my chin down near my chest. The cause is supposedly some trauma to or inflammation of the spinal cord. It seems that it can in some cases be the result of radiation of the spinal cord and shows up around six months after treatment – and this was the six month mark. This was worrisome, so I went to see my oncologist who assured me that the path of the radiation was kept away from the spinal cord and the amount of radiation was so low that he simply doesn’t believe that radiation could be the cause. At any rate there is apparently nothing to be done for it and it will usually eventually go away by itself without any sort of treatment, often after several months. My primary doctor (at my yearly October checkup) didn’t know what to make of it either, even after consulting with some of his colleagues, although their feeling was that if I have never had those symptoms before and then suddenly did have them six months after the radiation -- then what else could it be? So the overall recommendation seems to be to just monitor the situation and wait to see what happens before taking any further action. This is in line with my feelings, so that's what I'll do, at least for now.

Four month summary

2010-07-10T07:10:00.000-07:00

It has been four months now since I finished my radiation treatments. I'm feeling fine and am not having any major problems. I'm due for my next doctor check in August and should be having a CT scan at that time to be used as a baseline for future reference. There has been no significant news in the last few months, thus no blog postings either. Perhaps this four month milestone makes a good time for a summary.

Weight: I have been staying more or less constant at the lowest I've weighed in many years. I feel good without the extra pounds I used to have, however Marie thinks I look a bit too skinny now. I place no restrictions on what or how much I eat and even make an effort to have a snack now and then. I'm happy, though, so long as I stay at least even with my current level. I think the biggest impact on my weight level is the next item, taste.

Taste: It seems to me that everything now has the same flavors as before the radiation, but it also seems as if the flavors I taste are slightly muted from what my memory makes me think they should be. This, of course, is extremely subjective and impossible to measure. There used to be a variety of foods that I really liked and would crave when I was hungry. I now eat and enjoy those same foods but with less intensity and without the craving. Consequently I have little motivation to seek snacks during the day, other than actual hunger. I feel that it has been the snacking that has always caused my weight to drift upwards, though I have to admit that weight has never been much of a problem for me. It would seem that without the snacking, I tend to just hold even -- which is fine with me.

Part of my whole taste issue, I feel, is caused by a "dry mouth" condition, as follows:

Mouth and throat: For a long time I didn't really get just what "dry mouth" actually was. Yea yea, I read about it, but I still didn't actually get it. Now I find that the inside of my mouth can be completely wet, meaning fully coated with saliva, and it still feels dry even though it's wet. I also have read about saliva having a lubricating component which can be greatly reduced or even eliminated by radiation, but I didn't quite get that either, though now I do as I'm pretty sure that is what's going on with me. This condition is immediately relieved by a drink of water but that is a very temporary fix. The dryness is particularly noticeable when eating and I find that I constantly keep wanting everything to be more moist, and often end up sipping some water with each bite. The result of all this dryness, I'm now thinking, is a reduction in my enthusiasm for eating.

Now in spite of taste or dryness, when I'm hungry I eat, and when I'm not hungry then I'm less inclined to eat. Kind of seems to me like that's how it should be anyway, so it's not something I fret over.

Skin: The skin of my left neck and shoulder is somehow different. A little experimenting shows me that those areas simply have slightly less feeling than normal. It would appear that the nerves are just no longer quite as responsive. This is a very minor thing, as I don't normally pay much attention to how sensitive my neck or shoulder is.

I still have a numb area about the size of a silver dollar centered just forward of my left earlobe. It used to be much bigger and had been shrinking but has now been the same size for at least a month or so. This is not a bother except that it feels strange when I shave there, which is not really a bother as I don't actually have to shave there.

Hair: I now have a vertical boundary about half way between my left ear and the edge of my mouth, with whiskers on the mouth side and bald skin on the ear side, except for one or two single whiskers. So shaving the bald area consists of hitting those couple of whiskers and I'm done. The mouth side of my left cheek has pretty much returned to normal whisker growth so I may just try to grow a goatee this winter and see if there is a left to right difference or not.

The bald patches on the back of my head have returned to almost normal growth and a difference can only be noticed under close inspection, which is not an activity I engage in very often.

Energy: I tend to be a little more aware of my energy level than I used to be, so I'm slightly more inclined to stop working when I find myself getting tired. I'm happy to report, though, that when I don't want to stop and continue to push myself to finish a task, I end up just more tired rather than totally wiped out as was occurring during and for a couple of months after the radiation. I think my energy level is back to normal and no longer an issue, which is great because getting wiped out so easily was really a bummer.

Ear: The plugged up feeling in my left ear is gone now and everything seems to be normal.

I would say I'm in pretty good shape, all things considered. Were it not for the eating issue, I would most likely just forget the whole thing. The eating keeps reminding me though. Reminding me how minor my problems are compared to what could have developed.

Another big step. (Seems like it anyway.)

2010-04-25T17:58:00.000-07:00

Today I finally decided it was time to try a glass of wine. Well, actually I tried just a half glass and it was just fine.

So I'd say my taste buds are about ninety-nine percent healed up. I only occasionally notice a funny taste and even then it is not severe. I was told that many people report a metallic taste due to the effect of their radiation but I had not previously experienced that. The funny taste that I now get once in a while does have a slight sort of metallic component to it but that only lasts a moment or two, so it's not particularly annoying.

I spent a good part of this morning working at digging my sprinkler ditch with the result that I felt a little tired but it was pretty much the normal sort of tired one feels after a good workout. There is rain in the forecast for the next few days so I guess I'll be taking a mandatory timeout but will be anxious to get back to it as soon as the sun starts shining again.

Downhill coasting

2010-04-22T22:41:00.000-07:00

We went in yesterday to see my ENT surgeon for a checkup and found no surprises nor anything unusual. He scheduled me for a CT scan and another checkup in four months. So I'm coasting downhill now and expect that this whole experience will start being slowly moved from active memory to some dusty archival storage room in the back of my mind. I'm also fully aware that the memories will be brought back out into the light four months from now when I'm lying in the CT scan machine and then while we're waiting for those results.

I am doing much better as far as eating is concerned now, as I'm pretty much able to eat and enjoy all normal foods with only an occasional odd taste surfacing. Even the snacks and goodies have regained their appeal with the latest additions being Pepsi and finally even my medicinal chocolates.

My energy level is continuing to improve, which is encouraging. I'm in the process of digging a ditch for a hundred feet of sprinkler line and find that I still can't work all day long as I used to, but there's really no need for that anyway, so when I start to tire I take off the gloves, put the shovel away, and switch my attention to some other project. I find that not wearing myself completely out eliminates the need for a recuperating nap. I also find that a nap is more enjoyable when taken as a luxury rather than because of need.

This blog will probably tend to fade away as the days go by with no medical news to report, although I will still add entries whenever there is something new to add. If you would like to subscribe to this blog you can do so using this link: Posts (Atom). Friends and family can have new blog entries automatically emailed to them by simply sending me a note saying you would like to be added to the distribution list, or by leaving a comment to that effect.

Going off my diet

2010-04-14T21:57:00.000-07:00

Some small items to report, that maybe seem bigger than they really are.

You'll be able to figure out that I'm not much of a connoisseur of gourmet foods when I tell you that I was excited to find that I enjoyed a Burger King Big Fish with french fries for lunch today. That's the first fast food I've had in over three months and I'm so happy to find that it doesn't taste bad anymore. Next I'll have to try a hamburger -- and maybe even a Pepsi. And don't worry -- fast food isn't something I have very often.

You'll also be able to tell that I am a bit of a connoisseur when I tell you that I was pleasantly surprised to discover that I quite enjoyed a homemade fried apple pie for dessert tonight. Perhaps it's time to start sampling a few desserts again.

I also tried a little chocolate test today which was encouraging but showed me clearly that my taste buds are not fully healed yet. Soon after my radiation treatments started, chocolate went from being one of my favorites to being awful tasting. The bad taste is all gone but chocolate now seems only slightly good. Certainly not good enough to sustain any kind of craving. But the fact that it is back to being at least a little good, tells me that there is progress being made.

If I keep up with this kind of progress, though, I'll soon be putting back on all those pounds I've lost.

"Month after" checkup

2010-04-08T22:25:00.000-07:00

Weight: First thing they did was to check my weight. Seems I've lost a few more pounds, but not enough to worry over, plus I'm starting to eat more regularly now. I'll be happier though, if I can avoid regaining what I've lost, as I seem to feel better without the extra eight or so pounds I had been carrying.

Taste: My taste is continuing to improve, though very slowly. Not really noticeable on a day-by-day basis. I am now able to eat most foods, though most don't taste quite as good as they should. Sweetness seems to be the slowest taste to return, so I don't yet much care for snacks or desserts and that by itself is probably the biggest cause for the weight loss.

Skin: No soreness or redness anymore and no sign of any toughness or thickening. I also seem to be very slowly losing my "radiation" tan.

Hair: There is no sign of any beard regrowth and a very good possibility that this will be permanent. There is some possibility that the blank areas in the back may recover eventually, though that's not at all a sure thing.

Energy: I feel more or less normal, though I have been doing very little hard physical work. Perhaps I wear out a little quicker than I used to but it's also just possible that, with all the resting and sitting around for the last few months, I could be a mite out of shape.

Mouth and throat: The inside lining on the left side of my mouth feels normal now and it is likely that the funny feeling I experienced was because the inside of my mouth was burned by the radiation the same way the outside was. My throat seems normal and, best of all, my saliva also seems normal. A permanent dry mouth condition was a very real possibility but there is now a chance that I may have dodged that bullet.

Ear: It still feels like my left ear is plugged and full of water on the inside, but this was nothing surprising to the doctor, as one month is still early in the healing cycle.

The general consensus is that I seem to be doing quite well and that one month is not long enough to expect a major recovery, so as well as I'm doing in this short amount of time is pretty encouraging.

"Remember," the nurse said, "the affect of the radiation hasn't even worn all the way off yet and your body is just starting to heal."

My next few checkups will be at about four month intervals and I don't expect to see any sudden changes during that time. Slow and steady from here on out will satisfy me just fine.

Chores or playtime or both?

2010-04-07T22:13:00.000-07:00

Gosh, I forgot all about my four week report. Tomorrow I meet with my oncologist for a "month after" checkup, so tomorrow will be a good time for another wrap up report.

Today the weather broke (for a day or two) and I finally got to go outside again, as it was sunny and dry. So I took care of a couple of chores and wasn't really ready to go back inside yet when I remembered that when I mowed the lower meadow a few days ago, it seemed kind of swampy. So I grabbed a shovel and headed off to see what was up with the creek. It seems that, although I convinced the creek to go where I wanted it to last year, this year it had decided for itself.

I then spent awhile re-convincing it to once more go where I wanted it to, that is, down the side of the meadow instead of spreading throughout the middle. That effort wore me out but I recovered nicely after a short little snooze and was then drawn to my computer to experiment a bit with a new Photoshop technique I recently discovered. This blending mode was intended for making decorated cookies but I couldn't help but use it to document my afternoon's endeavor. The rabbit was just for fun, though we do see rabbits occasionally -- and, no, I wasn't really barefoot though my shoes did get soaking wet.

A good day

2010-04-04T20:55:00.000-07:00

Today, to avoid having to fix lunch ourselves, we stopped at the deli counter at our local grocery store and each brought home a sandwich good for both today and tomorrow. Turkey on wheat with Swiss cheese, mayo, lettuce and olives for me and I actually enjoyed it, though it was not as tasty for me as I knew it could have been. Both the bread and cheese seemed very bland but the olive flavor came through nicely which was a treat. Meals are getting much easier to take now that hardly anything has a bad taste anymore. Some things lack the flavor I know they should have, but I'm making progress which makes me quite happy. No luck so far with sweet things though, although when I try something sweet, it no longer tastes yucky -- it just doesn't taste much anything. The result is that I have no desire for snacks or desserts yet. Well now that isn't really true, as I do have the desire for them, but I don't have the desire to put them in my mouth since I know they won't be particularly good. Ah well ... one of these days I'll decide to try something else -- and it will taste a little bit good. I can hardly wait.

The taste issue is really the only thing left to recover from. Well, that and my missing hair, but I seldom think about the hair while I find myself often wanting to have some kind of treat.

My energy seems fine these days and I returned to the treadmill for a half session today and will start full sessions tomorrow. I've also spent some more time in my wood shop and am starting a spring remodel of my dust collection system. I can hardly wait for a little bit of decent weather so I can get at some of the outside work that has been waiting for me most of the winter. It's coming -- I can feel it coming. Both better weather and continued healing. Before I know it, there will be warm sunny skies and plenty of good things to eat and the cancer and radiation therapy will just be something that I remember now and then.

So yesterday was a good day, today was a good day and I expect the same for tomorrow. Too much? Maybe, but sometimes I just can't help but let the optimism flow.

A five pluses kind of day.

2010-04-01T22:01:00.000-07:00

Woke up feeling good this morning and that was a plus, though not quite good enough to get on the treadmill yet. Maybe tomorrow? The worst of my cold is gone now and I'm starting to notice an increase in energy, even over how I felt before the cold -- so the outlook for the next few days may be looking up and healing seems to be continuing -- that's plus number two. I then even made it out into my workshop and completed a little project for Marie without feeling worn out, so that was plus number three. This evening Marie fixed barbecued seasoned hamburgers covered by pineapple ring and served it with creamed corn and salad -- whereupon I cleaned my plate without hesitation and, even though I knew it was supposed to taste better than it actually did, at least it was definitely better than neutral, so that was a great big plus number four. Ha, four pluses in one day. Why that's another plus in itself.

Week three and little changed

2010-03-30T21:13:00.000-07:00

This is healing day twenty-one and not much difference from last week. I've had a cold this week though, and perhaps that has masked whatever little change might have occurred. On the other hand, it may just be that I'm watching the pot a little too closely.

However I did have a taste breakthrough this week when Marie cooked up some fish with a nice sauce on it and I found that I enjoyed eating it. It has been a very long time since I've eaten anything that actually had a good taste. So Marie is now going to start expanding our menu a bit to see if we can perhaps find a few more things that are above the neutral level, which the majority of foods still fall in for me.

I have become so conditioned to not liking things that I have to force myself to keep an open mind, or mouth, and give more things another chance. I even tried peanut butter and jelly today and found it to be neither good nor bad, but that's still an improvement over how I reacted a few weeks ago.

I just read another article claiming that a long term study has now repeated the results of a shorter term study claiming that a small daily dose of chocolate is good for heart health. I often think that some of these health food studies are pretty off the wall, but this one clearly is spot on. Perhaps being able to enjoy chocolate again would make for a good next breakthrough objective.

On the mend

2010-03-29T10:24:00.000-07:00

And I woke up this morning feeling much better, my cold is definitely on the mend.

A miserable cold

2010-03-28T21:40:00.000-07:00

I went to Google's Images to search for a picture of someone who looked miserable with a cold. I soon picked this one even though I don't have a fever or feel nearly as bad as this guy looks. I found this picture on Jason Dunn's blog. the picture was originally taken by bgaras2001 and entered in a photography contest. I would guess it was probably a posed shot but when I read Jason's post under the picture, I knew it was the one I wanted.

Jason was recovering from a bad cold and wrote, "As I was aching I couldn’t help but think about what it would be like to be undergoing chemotherapy, suffering from cancer, or any other ailment that made you feel absolutely horrible, all of the time. God willing, I’ll never have to go through anything like that – but suffering, even for a brief period of time, gives you some small insight into the life that others who suffer on a regular basis go through."

It has occurred to me more than once what bad luck it would have been to have gotten sick during the radiation therapy and how grateful I am that I avoided that unpleasantness.

I am currently suffering through a fairly miserable cold but do feel thankful that I didn't encounter it until I was in the healing phase of my treatment. It has provided a very clear reminder, however, that I am only in the very early part of this recovery process. This cold has forcefully demonstrated that my energy reserves are still far below normal, as I have felt totally knocked down for the last couple of days. In the "olden days" I would have bulldogged my way through it regardless of how I felt. These days, however, I listen more readily and hear that insistent call saying, "Just rest and wait till you're ready." So I've been waiting and resting, and will continue to do so with the expectation that I will recover from this little interruption in another few days. Then I can get back to my normal recovering -- for the next few months perhaps but with the expectation of finding things getting better and better as the weeks march on.

Fixating on food.

2010-03-25T23:19:00.000-07:00

I'm thinking that it's just human nature to focus on those things that you want but can not have, particularly when the object of your desire is right in front of you. It seems that these days I'm being affected that way by food. I have gone the last couple of months disliking most all foods but now I keep thinking of things and wondering if they will still taste bad or if they might have moved over to the good side yet.

One of the few foods that my damaged taste buds have been able to tolerate has been scrambled eggs, without any seasoning -- especially without salt, which I used to like on eggs. Today I wondered if I would still find salt disagreeable or if it would help, so I added a dash -- and discovered that it did make the eggs taste a bit better. One more step forward. I also had a small half sandwich with ham, lettuce and tomato, and found it tolerable or maybe even just a touch on the good side. Another step forward, as from early on I have not been able to stand having bread in my mouth.

This is like discovering the world of food all over again. Each time I think about trying something I've had to give up, I feel a combination of being anxious wondering if it will be good, fearful thinking it might still taste bad and hopeful that it will at least be neutral or better. It's a thrill to discover something that used to taste really bad and find that it is now neutral or even slightly good.

The next major breakthrough will be discovering something that tastes good enough that I find I want to eat it, rather than forcing myself. Then I'll know I've made it over the crest and am on the down slope. I guess until then, I'll just have to keep trying, one bite at a time.

Two week review

2010-03-23T22:03:00.000-07:00

This is healing day fourteen -- and what has changed in the last two weeks?

Taste: I repeated my sugar and salt taste test today. I placed a pinch of sugar on my tongue and again felt that sandy stuff starting to dissolve. I stayed calm and still, waiting to see what would happen. Waiting for it, waiting for it -- then, yes! Almost as though I was just imagining it, not quite believing it, I was able to detect just a slight subtle barely discernible sense of sweetness. Same with the salt, in that I had to wait for it and pay close attention but was finally able, just barely, to detect a trace of a salty taste. I realized while rinsing my mouth out that the tap water had stopped being disgusting and was instead rather tolerable. My taste buds, they are a changing -- at last. Dinner tonight moved from a combination of unpleasant and neutral to mostly neutral and it seemed like there might have even been a hint of fruit flavoring in the cup of mixed fruit. This is the most exciting news I've had in months. I am, by the way, holding steady and no longer losing weight.

Sore skin: The skin on the side of my face is pretty much healed now, the sunburned appearance is gone and I'm left looking only mildly tanned on the left side. My left ear however is still pealing from having been burnt, but it does seem to be on its way toward recovery and is not bothering me. I continue to experience a feeling of a plugged ear occasionally so I suspect there is still an issue with my Eustachian tube, but it is not a significant annoyance anymore.

Fatigue: My energy level seems more or less normal so long as I'm not doing anything physical. My reserves are still low though and I run out of steam quickly but recover easily by resting. I am slowly working my way back into some exercising, increasing my time on the treadmill and weight machine just a bit as each day passes.

Mouth and throat: I am still experiencing a stale or dry mouth feeling but it is readily relieved by sipping water. It is such a relief that water no longer seems to taste so bad anymore. My throat is no longer sore though it does sometimes feel a little hard to swallow, but not often. The skin on the inside left of my mouth continues to feel different than normal but is not particularly objectionable.

Hair: The blank rectangular area behind my left ear seems to be sprouting peach fuzz -- very short and very thin, but maybe something is happening. No activity in the left beard area.

This is all rather encouraging and makes me feel like there is actually progress being made, which leaves me anxious to see what transpires during the next two weeks or even by next week.

Body calling brain, come in. Hello, hello??

2010-03-19T22:14:00.000-07:00

First some little pieces of background information: We live on seven and a half acres in the country. We recently fenced in and are fixing up a nice garden area just outside of our backyard fence. Down the hill from our house is mostly forest land with a meadow area in the middle of it, perhaps a little less than an acre, which used to be overgrown with tall weeds. I have been using a self-propelled walk-behind bush-whacker for the last few years, to mow the weeds in an expanding circle in an effort to reclaim the meadow.

Today Marie asked me if I felt up to mowing some high grass in the new garden. My riding mower wouldn't fit around the raised beds and since it was a warm sunny blue sky day and I was feeling fine, I got out the bush-whacker, filled it with gas and dispatched the garden grass in short order.

So there I was outside in the middle of a beautiful spring day with the bush-whacker in my hands, feeling great, and nothing to do. That's when I got hit by one of those "as long as, might as well" impulses -- and away I went down into the lower meadow. It just happens that we have a seasonal creek down there too, and I figured that as long as I was already down there I might as well clean up the grass and weeds along the creek bed before heading for the meadow. So I did that first then moved on to the meadow.

I had worked my way about half way around the meadow's edge when my brain was sent a quiet little message from my body, something like "Whew, this is harder than I remembered." The bush-whacker was making a lot of noise though, and the message didn't seem to register. I kept going and came to a section that I had started clearing last year and could see that if I just cleared out a bit more, the meadow would be opened up to include the creek. I think it was just a few minutes later that the "body calling brain, hello, anybody there?" incident probably happened. There wasn't anyone home, so I went ahead and finished up the creek area and the rest of the meadow perimeter, then headed back up the hill. While trudging back up the hill, my body sent another message, marked urgent, which this time managed to come through loud and clear: "Fatigue alert, stop working, now!"

I put the machine away, went in the house, sat down in my recliner and promptly conked out into a deep sleep for an hour or so. The great news for me is that when I finally came to, woke up that is, I seemed to have recovered and felt fine and still do. So I really do need to pay more attention and I am still kind of low on energy reserves, but I'm clearly improving and that's plenty enough to keep me happy for now.

Healing - week 1

2010-03-16T22:39:00.000-07:00

The days are zipping by and it's one week since the last radiation treatment. Very little has changed except that my burned skin is healing nicely, though slowly, and there is only a little itching now. The worst side effect, my lost taste, has shown no improvement. My energy level seems to be improving somewhat and I'm beginning to think about increasing my physical activity a bit.

All in all there is no longer much new to report on a day by day basis, so the frequency of these entries will probably tend to go down a bit, though I'll aim for a minimum of at least once a week.

Summer day

2010-03-15T23:16:00.000-07:00

Today was a nice summer like day and we worked in the yard a bit. A little bit of raking and I was about worn out. Seems I haven't been getting much any exercise for the last few months and am rather out of shape. Too much resting and napping -- even though I suppose it was the right thing to do. At least I'm not sitting around getting fat. I think I've lost at least another pound this week and will need to start working harder to keep from going down much lower or it's going to become an issue of concern. Right now though, I'm feeling great, weight wise.

Sugar and salt

2010-03-13T21:02:00.000-08:00

This morning I was thinking that it would be nice to have some sort of specific test that would let me know when my taste buds were starting to improve. I know, I know -- too soon right now and besides, how about if things just start tasting better? Wouldn't that be a pretty good test? Well, anyway, in an effort to eliminate all the many variables in normal food, I decided to try a taste test using straight sugar and straight salt.

I pulled out the sugar bowl and dropped just a little pinch of sugar on my tongue with the result that I then had this sandy sort of stuff on my tongue which I could feel starting to dissolve but which had absolutely no taste sensation. Nothing at all. Blank. No good taste, no bad taste, simply nothing. I then rinsed my mouth out, to cleanse my palate of course. Ha, like it would matter.

I next took the salt shaker and sprinkled a little in my hand and dropped just a little pinch of salt on my tongue with the result that I then had this sandy sort of stuff on my tongue which I could feel starting to dissolve but which had absolutely no taste sensation -- for the first few moments. Then I started to have the sensation that, as best as I can describe it, makes me feel like I'm eating food that has gone bad. I quickly rinsed thoroughly. The sensation was not that of a salty taste, rather just the feeling that my mouth was demanding, "Don't swallow that!"

In conclusion, I have now discovered that I probably don't like salty foods right now and can't taste anything sweet. Seems that I might have already known that but, hmm, maybe I should have applied for a government grant to determine the effect of sugar and salt on a tongue with bombed out taste buds. Wouldn't be too surprised if there actually was a grant like that floating around somewhere.

A melancholy mood

2010-03-12T22:16:00.000-08:00

I have just learned that someone I have known, greatly liked and cared about for a very long time is suddenly facing breast cancer. I have known a number of other people that have had to deal with cancer and I have always felt concerned and sympathetic for them, but this time, with my being in the middle of the experience, the emotional impact is so much stronger.

It would seem that I should have learned some magic words that I could offer to make the trip easier but the best I can come up with is to not let the whole concept become overwhelming and to just deal with it one issue at a time, while having faith that you will make it through. Know also that having people offering their support and sending their best wishes, does make a difference. It has for me.

Watching grass grow

2010-03-11T22:37:00.000-08:00

Today is healing day two and no detectable change from yesterday. Of course no change was actually expected either, so I'm right on target.

I have a strong suspicion that watching myself heal is going to be much like watching grass grow in the early spring. I mowed our grass a couple of weeks ago and even though I look at it every day and see no difference from one day to the next, it does seem to get a little longer from one week to the next. I'll probably have to mow it again in a couple more weeks which will mean that it is actually making some progress from one month to the next. I'm expecting I'll do as well, though perhaps this first month will be a bit of a slow start.

Today was another low activity day, though I did clean up some paperwork that I've been putting off for a long time. Tomorrow I may try something a bit more strenuous, like doing a little work on my income tax. Actually we do have a short trip to our bank planned for tomorrow where they offer chocolate chip cookies to their customers on Fridays. Marie will have to do her duty and dispatch my cookie for me. It will be a major milestone in my recovery when the day finally comes that I can enjoy a chocolate chip cookie again. Nothing like a specific goal to work towards. Okay, grow grass grow!

Chapter two initial wrap up

2010-03-10T23:04:00.000-08:00

Chapter one consisted of an aggressive defense. Chapter two is the healing phase. Today was a day off, comprised of a significant amount of resting, reading and napping.

A quick rundown on the side effects, starting with the most annoying first:

Taste: About 99% nonexistent with the result that most things taste either bad or worse, which still seems very strange to me. I would have expected everything to be bland and neutral tasting. There is not anything I can think of that I would want to eat due to an expectation of good taste, though I'm beginning to think of neutral as good, and using that definition, scrambled eggs, baked shrimp, instant breakfast mixes and nutritional drinks are the only good foods I'm aware of. Everything else I eat because I know I have to, though I would prefer not to. Were it not for Marie's support with this issue, I would probably be nothing but a bag of bones by now.

Sore skin: The skin on the side of my face has toughened up and does not bother me much anymore but I still have a couple of rather sore areas on the left side of my neck and the top of my shoulder. They are not overly severe but it does wake me at night if I happen to rub against one of them.

Fatigue: I tire easily but since I've also learned to rest readily and am not attempting anything strenuous these days, the tiredness is not posing much of a problem.

Mouth and throat: I am more likely than normal, even during the day, to experience a stale morning mouth feeling, which I assume is actually what is referred to as dry mouth due to reduced saliva flow. This is readily relieved by sipping water. Water however tastes bad, though sugar free flavoring helps considerably even though I don't really taste the flavor.

My throat continues to occasionally feel a bit scratchy but is relieved by a sip of water and is not very bothersome.

My left upper gum area has a different than normal feeling which is not objectionable but is just something I have noticed. I was told that the radiation may have caused my gums to recede slightly. That might have affected the gum surfaces, which may be what I am noticing.

Hair: No growth on most of my left cheek or jaw and a blank rectangular area behind my left ear. The missing whiskers are a mute point so long as I shave. I might let my hair grow a little longer in back to reduce the blank area, so it may be a race to see if the missing hair grows back first or if the upper hair grows longer first, or perhaps I'll just keep it trimmed extra short in back. In any event, this is the least bothersome side effect of all.
- - - - - - - - -
So I expect my neck and shoulder to heal up soon, then the only thing that will still be really annoying will be the taste issue. That recovery may well be rather slow in coming but there's nothing I can do about it except just give myself the time to heal while being thankful that I don't have anything truly serious to deal with.

Graduation souvenir

2010-03-09T17:18:00.000-08:00

Hurray, today was my last radiation session!

I guess it must be true -- I'm really all done.

I brought home the mask they used to keep me in exactly the right position, as a souvenir and reminder.

All done except for the healing up part. The nurse told us today that it would be at least one or two weeks before my body and brain figured out that I was no longer being traumatized and only then would I finally switch into a full scale healing mode. She also said that some people are rather disappointed when they return for their one month checkup and find that they are not all better yet. So the word is, "Have patience, the healing is a slow process." At least I've turned the corner now and am ready to head in a new direction.

Right on target. My weight target, that is.

2010-03-08T20:56:00.000-08:00

The only thing better than only having one radiation session left is not having any left, which will happen tomorrow. I figure there will be a few days during which my body will pause and eventually figure out that it is not being beaten upon anymore and then gradually switch into healing mode.

This morning I weighed in right at my target weight, which I haven't seen in quite a few years and was beginning to think was just a fantasy goal. So far, I've only lost about one pound for each of the six weeks. I may well loose a bit more before things start to turn around but at this point I'm not particularly worried about it. Truth is I will be oh so happy when I discover that I am once again required to exercise a bit of restraint to keep from eating too much.

Today was a pretty good day, there's no reason to think that tomorrow won't be just as good and I'm feeling rather optimistic that the days to come will soon continue to keep getting better and better until... Well, it'll be interesting to see just how good they get and just how much I recover from all this.

Another weekend off

2010-03-05T21:48:00.000-08:00

If this is all you see, then you know that I am just taking it easy this weekend.

Getting anxious

2010-03-04T22:10:00.000-08:00

I'm getting so close to done that I can taste it. Well maybe smell it. At any rate, I can hardly wait for the next three sessions to be done. Today was a doctor meeting day and my sore throat had, of course, pretty much cleared up by the time we met but has now returned somewhat. I'm hopeful it will not get bad enough to force me to seek medications and for now I'm just putting up with it. I will most likely meet with the doctor again on Tuesday for something of a wrap up, then again about a month later to check on my progress. Another month or so after that and I will have a follow up CT scan.

The probability is good that all the cancer cells have been destroyed but there appears to be no way to definitely know for sure. It seems that all that can be done is stay watchful for new growths and even with the CT scans it still strikes me as a rather inexact science. If they did another scan right now, they would likely find some abnormalities due to the combination of surgery and radiation damage and would not be able to tell what was what, which is the reason for waiting for a few months. That should allow me to become fairly stable and that scan will then become the reference comparison for any other future scans. I will hopefully gain a little more insight on what's next during my "exit interview."

Right now I am just so thankful that I've made it this far without any major discomfort and I'm so focused on just getting through these next three sessions that I'm not much worried about anything else. I'm really anxious to get to the point where I can start reporting that things are getting better instead of worse and I'm relatively confidant of that not being too far away now.

End of the tunnel?

2010-03-03T22:02:00.000-08:00

So I think I can see the end of the tunnel but, uh-oh, I'm not done yet.

Only four more sessions to go, plus today they decreased the size of the radiation pattern hitting my neck by about fifty percent. I'm hoping that will take the pressure off of the top and back of my left shoulder which is being burned almost as much as the side of my face, but itches much more due to contact with my shirt.

I'm experiencing some soreness in my throat today but I've had that before and it's gone away by the next day. I'm not too sure that will be repeated this time, but I'll soon enough find out. We've been told that the later the side effects show up, the quicker they are likely to heal up, so even if the soreness continues I'm optimistic that it won't stay too long.

We were also told that the side effects will continue to worsen for a week or two after the treatments stop so I may be hugging the side of the tunnel waiting for the train to go by before I finally switch into healing mode and make the last little trek on out into the sunshine.

Yea okay, I know I didn't really have all that much to report today but I'm getting kind of antsy with all the laying around, in spite of being tired, and I felt that I had a choice of playing around with Photoshop to create that little picture, or I could have started working on my income taxes. Photoshop won out.

Same ol' - same ol'

2010-03-02T20:50:00.000-08:00

The only news today was hitting the five weeks down and only one to go milestone. Not news is that no meals today tasted good, but they were all edible which is more or less acceptable right now and I hopefully took in enough nutrients to hold even on my weight. I think I'm down about four pounds from when I started the treatments five weeks ago and that's still a pound over what I think of as my perfect weight. I already know what the doctor will likely say which is, "You have to eat!" Let's see, maybe when I go to get weighed Thursday I can wear some bigger shoes and maybe I might just happen to need to deposit a few rolls of quarters in the bank and maybe I just might happen to have them in my pockets while the nurse is weighing me so maybe I could keep from getting a scolding. Or perhaps I ate enough today and can repeat that again tomorrow -- perhaps.

We'll be meeting with the oncologist Thursday and will find out then what my schedule will be like once the treatments are done. I do know that I will be back after some length of time for another diagnostic CT scan, but though I think he mentioned it at the start, I don't remember how often I'll be coming back for followup checkups but supposedly that's something that I'll be doing for the rest of my life, though perhaps with decreasing frequency as time goes by.

I was rather tired this morning and ended up taking both a pre and a post lunch nap and feel fine right now. I think I'll go polish off a few more chapters of my book and will then be ready to see what tomorrow brings.

I think I'm going to make it

2010-03-01T20:59:00.000-08:00

I spent this weekend kind of acting like I was on a vacation with no planned activities. Pretty much just goofed off the entire weekend and that went quite well, except for the eating part. It's so strange to find that there seems to be no way to predict what my reaction is going to be. Can you imagine anything more innocuous than plain unseasoned mashed potatoes? Can you imagine a feeling of being ill without having any symptoms at all except that you just feel something is seriously wrong? I tried the mashed potato and it didn't taste very good but not terrible either so I forced myself to eat some more. After the third swallow I could feel myself getting sick though I couldn't tell what was the matter. I then gave up on the potato and felt a little better in a few minutes, so I continued making myself eat some of the rest of the dinner. Then, feeling okay again, I made another try at the potato and was again instantly sick after just two or three swallows and this time it left me more or less wiped out for the rest of the evening.

I suspect that if someone had been telling me that story, I would have been thinking that it was all in their head and they just needed to take control of themselves. However, I really thought I would be fine with the potato and was quite surprised by the sudden bad feeling. Whatever was going on is a mystery to me but regardless of whether it was physical or mental, we crossed that dish off my list of edibles and I turned in early that night.

I had a good night's rest, in spite of how I was that evening, and woke up feeling fine. Today's session went normally, with twenty-four down now and only six to go. Breakfast was tolerable and Marie made scrambled eggs for my lunch, which is my current favorite dish at just a touch above neutral. She threw the dice, hoping not to go bust, and baked some jumbo shrimp, adding some extra seasoning in an effort to boost the flavor and served that with mixed vegetables and a side of sliced peaches. I was a bit apprehensive about the shrimp but was delighted to discover that I did not dislike it. In fact the whole meal was just one little notch on the positive side of neutral and I scarfed everything down as though I was starving. It was such a pleasure eating something that was not tasting bad.

So this whole radiation thing is approaching the end and my biggest worry is whether my food happens to taste good or not. I'd say that I'm doing pretty darn good considering that this is cancer we're dealing with.

A day off

2010-02-27T22:00:00.000-08:00

Today I seemed to be low on energy, perhaps reacting to yesterday's events, so I have been diligently laying around, reading and napping, while feeling fine but just not overly energetic.

I may post something later this evening but, barring that, I have this short little note scheduled to go live at 10:00 P.M. so if it actually does post it will mean that I have taken the day off, and perhaps even the whole weekend.

Everything's relative, I guess

2010-02-26T22:55:00.000-08:00

These days I wake up in the morning and usually before long I'm noticing the sting and itch from my radiation burn. It's a little less noticeable while I'm getting breakfast, but still there. Often times I will sit down at the computer and the sting and itch either bothers me or not depending on how interested I am in what I'm doing, though it never leaves completely. I often times will also sit down and do some reading and the burn will come and go depending on which part of the story I happen to be on.

Today I was lucky, or not, to have two or three hours when there was no stinging or itching at all and I wasn't even aware that I had any side effects. Now it just happens that it had rained all of the night before and it continued raining all this morning and most of the afternoon. This was not a wimpy scattered shower or light mist type rain, this was a full out western Oregon rain, pounding down for hours and hours with no letup in sight, ponds forming anywhere there is a dip in the ground and creeks materializing out of the ground and running down your driveway. This was also a day when, on getting up in the morning, and walking through the living room on the way to the kitchen, I stepped in something wet and while looking down to see if our dog had left me a gift, I felt drops hitting me on my head and shoulders.

By the time we left for my radiation treatment, there was a garbage can, a bucket, a couple of bowls and a towel placed strategically around the dripping area. We had some shopping to do, so didn't get back till lunch time and it continued with hard rain the whole time. So after lunch I dressed up in rain gear, got out a ladder and had a look at the roof. That's the point when all my side effects disappeared.

By way of background let me just say that we live in an older house which is, for the most part, fairly well built but there are some parts of the original construction that I can only say, as I often do when contemplating those particular parts, "What were they thinking?" We have an open beam ceiling in the family and living rooms and the ceiling and roof were constructed in a manner such that when someone walks on that part of the roof and steps on a shingle just right, it depresses just enough to let the shingle nail punch through which breaks a hole in the shingle but then the broken part flaps back down to hide the hole when the weight is lifted.

I spent the next couple of hours up on the roof in the rain with a can of roofing wet-patch, searching out probably forty to fifty of those hidden holes and trying to get the wet-patch to stick in the rain, which it does but only with significant coaxing. I next went in the garage to put things away and discovered that the garage roof was also leaking. We have a gabled cover from the house to the garage which is connected into the middle of the garage roof in a manor that makes me wonder, "Didn't they realize...?" Anyway, I spent another hour installing some aluminum flashing and applying more wet-patch. (We're thinking that this summer might be time for some serious roof rebuilding, but that's a whole nother story.)

At no time during those three hours, did I experience any stinging, itching or any other side effects, however they did all return immediately once I had put things away, gotten cleaned up and sat down inside to take a breather. I should, I suppose, note that I did manage to ask myself, while on the roof, if I was feeling too tired, but the unspoken and overriding response was that it didn't matter, as I had to finish the task at hand.

Happily, I don't seem to have overextended myself and though I figured that I would be forced into a nap to recover, that didn't happen and we ended up watching the Olympics instead and I continued to feel just fine. Then we had a nice dinner, although for me it wasn't particularly good but it wasn't bad either, which made it seem good. And in the end I still feel fine right now.

Everything is relative, I guess.

Weekly check and looking good

2010-02-25T21:59:00.000-08:00

I had a standard treatment session today, then we met with my doctor for the weekly check and he indicated that everything was looking good. No surprises. My weight has dropped a few pounds but nothing to be concerned about yet, though the doctor empathized strongly that it was important not to let it keep dropping.

Later we had lunch which was not pleasant but I forced myself to eat it anyway. If I can force myself to clean my plate then that means it was a reasonably good meal, for me. Then Marie made a nice dinner but try as I might I just could not get more than a few bites down. I can't help but feel a little bad for Marie when she is so supportive and tries so hard to accommodate me and then I can't stand what she fixes, even though we both thought I might be able to handle it. I ended up having a glass of instant breakfast and half an apple, both of which were rather tasteless which translates to pretty good in the world I'm in right now. So that left me also feeling a little guilty for not having eaten enough, although secretly I wouldn't mind losing just a few more pounds then working to do whatever it takes to hold steady. I do realize though that I shouldn't let myself think that way, as the doctor and nurses have all told me that this is not a good time to be thinking about dropping pounds.

Well all that business seems rather negative but, truth be told, except for the eating part, I had a pretty good day today. Started out kind of tired but then picked up steam as the day went on and managed to get a fair amount of work done on the computer -- and I still feel pretty good right now. I think I'll do a little reading and then call it a day, while reminding myself just how lucky I am with what I'm experiencing compared to what so many other people have to go through.

Where's the focus?

2010-02-24T23:15:00.000-08:00

My older brother made a very true and thought provoking comment today (Harry's comment), mentioning the tendency to focus on the immediate side effects rather than the final outcome, and that made me realize that while paying a lot of attention to the discomfort and inconvenience of the treatments, I had more or less forgotten that I have cancer. Well, not entirely of course, but the idea of having cancer had sort of faded into the background as something that was just there, while my primary objective has been to make it through the treatments and deal with the side effects without losing my normal slant toward optimism. Maybe I've just gotten used to the idea of cancer but I think, more likely, it's rather an indication of my confidence that the end result will be successful, freeing me to focus on the current process and anticipate the end of most of the side effects while taking the end of the cancer as simply a given.

I do realize however, that once this episode is over I will remain forever after with a higher than normal probability of having a similar problem again. And what, I wonder, are the side effects of that thought going to be? Will I appreciate a little more all the good things in my life? Will it change how Marie and I plan for our future? Will we, perhaps, be a little less inclined to put off the things we think about doing? Will I take the time and energy to figure any of this out? I don't seem to have any answers, but questions of that sort might warrant some future pondering. Sometimes it is okay to put things off, such as pondering, when there is a more important immediate objective, such as getting myself put to bed at a reasonable hour.

Four down and only two weeks to go!

2010-02-23T21:47:00.000-08:00

I started this day by removing my goatee. Not a big deal as I usually only keep my beard during the winter time anyway, shaving it off each spring. Maybe it'll be an early spring this year.

Today marked the two-thirds point with twenty sessions done and only ten to go. Six weeks seemed pretty long when I started, though I figured it would go by relatively quickly and, so far, that's holding true. Now I'm down to only two weeks left and that certainly sounds doable. I have to admit, though, that I'm just a little apprehensive, understanding that each session adds to the effects of the previous ones, meaning that the side effects from these next ten treatments may increasingly be the hardest to handle. But I can hardly turn around and go back, so I guess we'll keep on counting off the days until all the sessions are done and just deal with whatever turns up.

So this is a short post with not really much new happening -- and that's a good thing.

Another bad hair day.

2010-02-22T17:40:00.000-08:00

Yep, although there is no sign of burning yet, the radiation is clearly encroaching on the left side of my goatee. Today I found numerous short white hairs around my computer station and a mirror check revealed that my goatee is starting to look quite sparse on the left side, giving me a rather crooked look, so I will most likely give it up tomorrow morning.

I had a couple of good days this weekend and even managed to get outside and do a few chores, narrowly averting a major catastrophe in the process. Our inside firewood was running low and I was feeling pretty good so I figured I would move some wood onto our back deck. The blue sky and sunshine clearly was a contributing factor to my improved mood. Our deck is about four feet high and our wood storage area is about fifty feet from the house, so I used our tractor to bring the wood over and lift it up onto the deck. That all went exactly as expected, not really being all that hard physically due to the tractor. I finished moving the wood and then remembered that Marie had asked me to take out a couple of bushes not far from the back deck.

I usually handle bush removal by wrapping a chain around the bottom of the bush and attaching that to the tractor lift and just pulling the bush out, again with little physical effort. So I looked around and spied the two bushes just outside our dog run area, pulled the tractor up to them, picked up the chain and got ready to go at it, but then paused.

"Listen to your body and what you're feeling," everybody keeps saying, so I took a moment to ask myself how I felt. The answer was that I felt pretty good with no shortage of energy, but in that moment I also realized that I felt a little uncertain. Uncertain if I was about to pull up the right bushes. I should note here that Marie is our garden person and I mostly only act as her handyman. Succumbing to some inner wisdom, I went in and asked just exactly which bushes were supposed to go and, I'm sure you've guessed by now, I was getting ready to yank up the wrong ones. Good advice, that listen to your feelings stuff. Marie would not have been happy to find her dead bushes still there and holes where her good ones used to be. So a happy ending to that episode.

I've been a little tired today so have been mostly taking it easy though the blue sky and sunshine did lure me outside again (while being sure to wear a broad brimmed hat) long enough to climb up on our roof and apply an application of moss killer to our shingles. That's what you run into, I guess, if you live in the western half of Oregon.

All in all, things are still going pretty well and I'm confident that I'll be able to get through whatever else shows up.

Self portrait - radiation burn

2010-02-21T08:35:00.000-08:00

Rather than use up a thousand words trying to describe my radiation burn, I decided to go the self portrait route:

I apply a slightly greasy "healing" ointment after each session and on the weekends, which is supposed to help the skin heal, but the healing clearly cannot keep up with the radiation. It is only slightly itchy and is not sore at all, so far.

What is radiation therapy? (Tech talk)

2010-02-20T16:08:00.000-08:00

What is radiation therapy?
A rather simplified answer is that radiation therapy consists of using a machine to produce x-rays which are aimed at the cancer sites in the body and the x-rays damage the cancer cells more than normal cells such that when the treatment is done, the cancer cells have died but the normal cells are able to recover.

A more detailed account follows, much of which was obtained from a variety of web sites, including a very thorough one by the National Cancer Institute, some from my oncologist and some that is just my impressions.

Electromagnetic radiation
Our air and, I think probably the whole universe, is filled with electromagnetic radiation which is classified into several types according to the frequency of its wave; these types include (in order of increasing frequency and decreasing wavelength): radio waves, microwaves, terahertz radiation, infrared radiation, visible light, ultraviolet radiation, X-rays and gamma rays.

X-rays
X-rays are way past the blue-violet end of the visible spectrum so we cannot see them but they are very powerful and potentially very dangerous. They can pass through virtually anything, effectively shielded or absorbed only by materials of high atomic weight such as lead. Because of their penetrating ability, X-rays are used to see inside the human body, destroy cancer cells in radiation therapy, or analyze the internal structure of rocks and minerals, for instance.

Linear accelerators
Linear accelerators are widely used in medical radiation machines to produce X-rays for obtaining internal images at lower power and for cancer radiation at higher power. The linear accelerator uses microwave technology (similar to that used for radar) to accelerate electrons in a part of the accelerator called the "wave guide", then it allows these electrons to collide with a heavy metal target. As a result of the collisions, high-energy x-rays are produced from the target.

X-ray radiation delivery
These high energy x-rays will be directed to the patient’s tumor and shaped as they exit the machine to conform to the shape of the patient’s tumor. The beam may be shaped either by blocks that are placed in the head of the machine or by a multileaf collimator that is incorporated into the head of the machine. The beam comes out of a part of the accelerator called a gantry, which rotates around the patient. The patient lies on a moveable treatment table and lasers are used to make sure the patient is in the proper position. The treatment table can move in many directions including up, down, right, left, in and out. Radiation can be delivered to the tumor from any angle by rotating the gantry and moving the treatment table.

Cell damage
When energized charged particles, such as X-rays, pass near orbiting electrons, the positive charge of the protons attracts the negatively charged electrons, pulling them out of their orbits. This is called ionization; it changes the characteristics of the atom and consequentially the character of the molecule within which the atom resides. This crucial change is the basis for the beneficial aspects of all forms of radiation therapy. Because of ionization, the radiation damages molecules within the cells, especially the DNA or genetic material. Damaging the DNA destroys specific cell functions, particularly the ability to divide or proliferate. Enzymes develop within the cells and attempt to rebuild the injured areas of the DNA; however, if damage from the radiation is too extensive, the enzymes fail to adequately repair the injury. While both normal and cancerous cells go through this repair process, a cancer cell's ability to repair molecular injury is frequently inferior. As a result, cancer cells sustain more permanent damage and subsequent cell death than the normal cells. This permits selective destruction of bad cells growing among good cells.

Treatment length
The oncologist develops a radiation plan by starting with a planning CT scan of the tumor and surrounding area. The target areas and areas to be avoided are specified and the resultant data is then passed into a computer simulation program which produces a recommended radiation pattern. The oncologist reviews the results and when they are satisfactory, the radiation therapy team meets to decide how much radiation is needed (the dose of radiation) and how many treatments the patient should have. The damage from each radiation treatment increases at a nonlinear rate such that the effect is much greater from sessions near the end of the treatment plan than those at the beginning, thus great care is taken in determining the exact amount of radiation and the number of treatments.

Time for a lazy weekend.

2010-02-20T10:12:00.000-08:00

Friday was a tired-all-day sort of day and I finally gave up and went to bed around eight o'clock, which I never do unless I'm sick -- and I suppose my body does think I'm sick. I didn't get up till after eight this morning and sleeping for twelve hours is also something I virtually never do. It must have been good for me though, as I got up feeling fairly rested.

There are just a couple of new little things to report:

The first being that although broccoli is a vegetable that I normally like, I discovered last night that it's now on my "can't stand it" list. I forced myself to keep eating it for a few mouthfuls but soon reached the point where I knew if I forced any more in, it would be coming right back up, so I had no choice but to give it up. I am aware that there may be some of you, one in particular, who would think that broccoli would be no great loss, but for me it's just one more sign that the times they are a-changin'.

The second item is that I've noticed over the last few days that the back of my left shoulder has been feeling a bit sore and itchy. Yesterday I took a look in the mirror and could see that the red swath across the left side of my face that extends from the top of my ear to most of the way down my neck has now migrated about six or seven inches down the back of my shoulder.

I'm just very grateful that although they are getting rather annoying, none of my side effects so far are causing me any pain.

So, my plans for this weekend are to just take it easy and have a couple of lazy days before returning to "work" on Monday.

I would like to thank everyone who has left comments. I receive a reminder email whenever a comment is posted so you can rest assured that I read, enjoy and appreciate each and every one.

Defensive nausea and therapeutic writing

2010-02-18T22:28:00.000-08:00

Today was the day for our weekly meeting with my oncologist and the short version is that everything I've been experiencing is right on track with what he was expecting. Maybe even slightly better, as some of the side effects have taken a bit longer to show up which is a good thing in that the longer they take to show up, the higher the odds are that they might not become as severe at the end. The little blister I had noticed in my mouth was gone this morning but this is still about the time when I can expect some problems to start developing in my mouth and throat, and that little has shown up so far is a positive thing.

However the day in general has been a bit on the down side. I was rather temped to skip today's post or just include the above paragraph and let it go at that, but then I had the thought that always expressing every occurrence and feeling in a positive light would not leave a very accurate or honest account of this ordeal. I woke up with a feeling of low energy this morning and have continued to feel that way all day, in spite of an afternoon nap which didn't really help much. I'm pretty sure that being tired makes one more susceptible to negative feelings and a little nausea during dinner didn't help either.

The dinner experience was both interesting and unpleasant. Marie occasionally makes us a nice little dinner of soup and biscuits which I have always enjoyed, especially the hot biscuits, sliced open, butter melting on top and spread with an ample dab of strawberry jam -- really good. So I get my biscuits all fixed up just right, pick one up and take a big bite and... Well, not really good, in fact really bad, really really bad.

Let me interject here what I think I've said before. That the cancer center staff are very concerned about their patients maintaining their health by being sure to get enough nourishment even though they may have trouble eating and swallowing and their food may not taste good. So even if I lose interest in eating, they want me to make the effort anyway.

Okay, so to be very blunt about it, with the way my taste buds are working, that biscuit was chewy tasteless mush covered with grease and spread with goop, but because I knew I was supposed to, I ate it anyway and even started on the second one, but couldn't finish it. Now I might not have this just right but I suspect that our bodies have a built in safety mechanism, based on taste and texture, that is meant to keep us from ingesting spoiled food such that when the right (or wrong) taste and texture is sensed, nausea is triggered. So there I was, knowing full well that there was nothing wrong with what I had eaten but feeling nauseous anyway. It also made me feel bad for Marie, in that she had fixed something she thought would be good and here I was feeling sick from it. That hardly seemed fair to her. In spite of the nausea I finished all the soup, as it didn't seem to bother me. It was about a half hour later before the nausea finally went away and then I was back to just feeling tired, plus kind of discouraged and a bit depressed with this whole situation.

As I said up above, I was feeling rather down and almost skipped making this entry but I was also kind of drawn to document what was going on so I just sat down and started in on it. Interestingly enough, I found that the more I wrote, the more the discouraging and depressing feelings faded away. I don't know just where all those feelings went but I can honestly say that I'm feeling okay now. Perhaps it's that some of you who are reading this have shouldered some of my burden, thereby lightening my load. Hmm, I don't know where that thought came from but if that sort of thing is possible, then I have the greatest appreciation and thank you kindly for caring.

I am still tired though, so I think I will click the "Publish Post" button now, then get myself to bed.

Getting through tomorrow

2010-02-17T21:27:00.000-08:00

I had just finished having some cereal for breakfast this morning when I noticed that it felt like my tongue was rubbing on a little piece of something stuck way in the lower left back of my mouth. A mirror and small flashlight let me see what it really was. Had I done my "Half Time Wrap Up" entry today instead of yesterday, I would have had to add that I developed a little blister like bump on my gum that sticks out against my tongue (kind of annoying), and that my throat is starting to look red and sore, not dissimilar to the way my face is looking. Neither of these conditions are painful and the raw throat was somewhat expected. I will be seeing my oncologist tomorrow and will ask about the blister or whatever it is and pretty much expect to hear, "Yep, the radiation can cause that."

We met with the ENT surgeon today so he could check on how things are going, and were told that everything looks about as he would expect at this stage. He reminded us that the radiation effects have been building up for the last three weeks and will continue to build up through the next three weeks and then will keep right on building up for at least another couple of weeks after the radiation has stopped. Finally I will then turn around and start the healing process. Now I guess I already knew that but having him say it again kind of brings home that it's probably really going to be true. Oh man -- I think maybe I'll just try to focus each day on getting through tomorrow.

In response to Dean asking about interaction with other radiation patients:
There is seldom much more than a "Hi" or "Hello" in the waiting room, as the staff is pretty good at keeping to their schedule, so there is minimal waiting plus we seldom see more than one or two other people and then only coming or going. There is a social worker in the Cancer Center who met with us early on to let us know that she leads a support group which we are welcome to attend, but I have not felt the inclination to pursue that yet. There are also, of course, many cancer discussions and blogs to be found on the internet, some of which have been quite helpful.

Half Time Wrap Up

2010-02-16T15:47:00.000-08:00

Half way done (15 down, 15 to go) seems like a good time to summarize how the side effects have been so far. Forgive me if there is some redundancy between this and previous posts.

The worst thing is that my taste buds are pretty much kaput and eating is becoming a chore. All flavors have slowly become either greatly subdued or completely missing. Water has a stale slightly unpleasant taste. Most foods no longer taste good but I'm grateful that neither do most things taste bad, though some do. Sweet things aren't very pleasant when you can't taste the sweetness, so I've pretty much given up on desserts and snacks, though I did have a popsicle yesterday and the cold crunchiness of it felt good even though there was only a hint of flavor. The cancer center staff carefully check my weight each week and I'm sure I'll get a scolding if they see my weight starting to drop, so I'll just have to keep shoveling it in, regardless. I greatly appreciate Marie's support in catering to my out of whack taste buds while helping me get proper nourishment. She found me some Fortify nutritional drinks which surprised me by tasting a little bit good, so I'm starting to have those for my lunch dessert.

My energy level is very unstable, ranging unpredictably from what feels like near zero, to perhaps as much as eighty percent normal. I usually feel better after a night's sleep or after a nap but I also sometimes wake still feeling tired. It's kind of frustrating, as when I don't do much anything I start getting really bored but then when I do try to doing things, I wear out quickly. Trying to do a few things and paying attention and stopping when I feel tired seems to be working okay for now. I was running near empty a few days ago, then got better while Marie became very worn out for the next few days. Now we're wondering if we both had some kind of bug, or something. I'm hitting somewhere around 75% today so it's a more or less okay day.

The left side of my face and neck is getting somewhat red, a little splotchy, slightly hot and kind of itchy but not actually sore yet nor itchy enough to be significantly uncomfortable. I just have to keep from succumbing to that urge to scratch the itch. Unfortunately, because of the radiation and possible skin complications, most home remedies cannot be used without double checking with the nurses, and anyway they have already given me what they have found to work the best -- and I've found that they seem to know more about all this than I do.

I have just started experiencing hair loss in the area of the radiation. This might partly be a blessing in disguise as I may be able to stop shaving the left sideburn and cheek area. I am still slightly swollen and numb in that area, due to the surgery and maybe also the radiation, and shaving there feels weird. My hair is usually so short that I doubt the sections lost will make much difference.

The inside of my left cheek feels just somehow a little not right, though I can't really pin down what's wrong. Maybe it's a little numb too and I'm just paying more attention now.

My throat seems to feel somewhat scratchy every now and then but not enough to really call it a sore throat. Drinking water helps with the scratchiness and I'm suppose to drink lots of water anyway, though I have to force myself because of the taste. They want me to drink eight cups a day, which seems almost impossible even if I was in perfect shape, but I'm working on increasing my intake. There has been no swelling in my throat or discomfort with swallowing, so far, which I'm really happy about.

My saliva does not yet seem to be affected, which I'm very grateful for as my impression is that having reduced saliva flow can be a bit unpleasant -- but if it happens, it happens.

So I have a number of slightly unpleasant things going on which, even when all lumped together, are still quite manageable and when taken separately are mostly each just a nuisance which I have no doubt I can handle for another few weeks. I continue to be tremendously grateful that mine is such a simple little isolated problem compared to what so many other people have to deal with.

And I thank you all kindly and very much appreciate the various personal comments.

Bad Hair Days Coming

2010-02-15T20:39:00.000-08:00

The left side of my face and neck are getting a bit red and starting to itch these days. I am using Aquaphor healing ointment daily which helps but not 100%. I don't let myself scratch but I have discovered that just a very light touch with the tip of my finger on the itching spots seems to bring relief, at least for a little while. Some of the itching is up into my hair line behind my ear and today I absentmindedly pinched some hair and tugged gently, rather than scratching. Yep, that gentle tug pulled out about a dozen hairs. Of course, then I had to try it a few more times and came away with at least a half dozen hairs each time.

So this was treatment number fourteen and it looks like I'm starting to loose my hair. One more predicted side effect coming to pass. Since I've already given up my winter beard for a goatee and since I keep my hair quite short anyway, I don't expect the hair loss to be particularly noticeable. I'm just grateful that I'm only having radiation therapy rather than the radiation and chemo combination, as my hair loss should be restricted to only the areas being radiated.

Tomorrow's a special day as it will be my fifteenth treatment which means I'll be half way done. Realistically though, since the radiation effects tend to build up, the next three weeks will likely be a bit more uncomfortable than the first three were. The good news is that the last three weeks have zipped by rather quickly so I'm hopeful that the next three will go just as fast.

My Valentine

2010-02-14T06:00:00.000-08:00

The chocolate blues

2010-02-12T22:31:00.000-08:00

Our bank (Umpqua) serves its customers cookies on Fridays. Several kinds, but the ones I zero in on are the soft chocolate chip variety. Just by coincidence we often don't manage to do our banking until Friday. That happened today, so on the way home from my morning radiation treatment we stopped in at our local branch to deposit a check and withdraw a couple of cookies, which we brought home and saved for a lunch dessert. We finished our lunch and then moved on to the cookies. Marie enjoyed hers but there was something wrong with mine. How disappointing to find that the chocolate chips in my cookie didn't seem to have any chocolate. Even the cookie dough was rather bland. Normally if there was a plate of chocolate chip cookies out on our counter, I would snag one every time I walked past and I might even manage to just happen to walk past a few extra times. Today, after eating that nearly tasteless cookie, I had no desire for seconds.

Later this afternoon, as an experiment, I tried one of my favorite little dark chocolate bars.

I love those little things but, although the texture felt the same as always in my mouth, I could not detect any chocolate flavor. It didn't taste bad or anything, it just didn't taste like anything at all -- no flavor whatever. So I guess I'm done with chocolate for the duration.

It seems that the tongue is rather sensitive, even to very low levels of radiation, and loss of taste is an expected side effect. Some people find that the radiation makes things actually taste bad and I'm happy I'm not experiencing that yet and I'll just have to wait and see if it happens. Thankfully, though, this should not be a permanent affliction, though it may take months to recover after the radiation sessions are finished. I'm also quite thankful that I am not yet experiencing any discomfort in my mouth or throat.

So all in all, this was another good day and I'm feeling fine and quite happy to have the next couple of days off.

The fourth corner of the fatigue square

2010-02-11T21:35:00.000-08:00

First I should mention that last week's problem of water tasting salty to me, has not gone away as I hoped it would. The cause of this condition seems to be somewhat a mystery but my oncologist said that if I wanted to blame it on the radiation therapy, it might be a possibility though he had never heard of it. It is, however, about the time in my treatment when my taste could start being affected. Personally, I haven't yet given up on the theory that the Fluoride might have caused my salt receptors to become ultra sensitive. Water does taste somewhat better tonight though, so the affect may yet wear off and let my taste buds return to normal -- probably just before the radiation starts ruining them again.

In my last post I noted that I had started out feeling okay and ended up tired, then started the day tired and ended up okay and yesterday started out tired and ended up more tired. I'm now happy to say that I started today feeling good, felt no need for any naps or even resting and am ending the day feeling even better. I feel a little bit like a leaf blowing in the wind and I never know whether I'll be going up, down or holding even. Oh well, I'm just grateful for today and looking forward to tomorrow.

Riding on a yo-yo

2010-02-10T22:05:00.000-08:00

A few days ago I woke up feeling okay and then lost energy throughout the day. Yesterday I woke up tired and gained energy as the day wore on. Today I woke up tired and stayed tired. I had a normal therapy session and then stopped at the grocery store on the way home. Marie suggested I just rest in the car while she shopped. Did I take her very sensible advice? Oh no, not me. I decided to go in and see what might be new in their electronics department. (Mostly found Wii accessories, though we don't have one so I wasn't interested.) By the time I got out of there and found Marie, she was checking out and as we walked toward the door, I said something to the effect that I was about out of gas. Marie offered to fix lunch at home but I said I was good for a lunch out so we stopped at a country deli on the way home. It was quite good and I cleaned my plate while feeling only moderately tired. By the time we got home, I was so exhausted I went straight into the bedroom and zonked out for an hour or so. I got up still feeling tired but not sleepy, so I dragged myself through the rest of the afternoon till I finally dozed off again in my chair for awhile before dinner.

Now, as I type this, I don't feel particularly sleepy but I just stopped and asked my body, "Hey Body, how you feeling?"
Body answered, "I'm beat, fool, next time listen to your wife and me. Now get to bed."

So I guess that's what I'll do. Good night all.

Session #10 and feeling better today

2010-02-09T21:29:00.000-08:00

The getting up earlier thing didn't work too well. Actually I got up feeling really tired this morning, and immediately blamed it on the radiation, which makes a pretty good excuse for almost anything. Didn't take the trash out yesterday -- it was the radiation's fault. Forgot to pick up my shoes -- the radiation did it. Letting the mess build up on my desk -- right, radiation. Took a nap instead of whatever -- radiation. Well, that last one might actually be valid. Anyway, I've been feeling better as the day's been going on. I even mowed the lawn this afternoon, on a riding mower before you start thinking I was working overly hard. Right now I'm feeling fine and looking forward to a great tomorrow.

It's looking like the morning sessions will be just like the afternoon ones were, that is short and repetitive, which is a good thing. I'm not looking for any surprises right now.

Yes, this was session number ten, so I'm one-third done, almost to one-half, so coming up on two-thirds, soon to hit five-sixths and practically finished. Have to admit I am counting days. Counting up right now but will switch to counting down at the half way mark.

Tomorrow we will do some shopping and stop at the library after visiting the cancer center. One plus for the treatments is that since we are going every day, we no longer have to plan ahead for a trip to town, at least not for the next four weeks.

P.S.
We love having deer around and we do feed them, though sparingly -- and we do not try to make them into pets. ( mercerfolks deer )

First Morning Session

2010-02-08T21:24:00.000-08:00

I was dragging last night but, as I expected, I woke up feeling fine this morning.

I will have the rest of my treatments at ten o'clock, which means I need to leave home by nine-thirty, and I discovered that by sleeping in a little and then dilly-dallying around a bit, it was quickly time to get going.

We are thinking that, maybe, we'll have to start getting up a little sooner now so as to have at least a little time before having to leave. We don't use an alarm clock but the sun is starting to come up a little earlier these days, so perhaps as the sunrise advances we'll wake up sooner. We can become "one with the sun" though there might be a small problem on the cloudy days, which are pretty frequent in February.

The waiting room was empty when I arrived and they took me right in, zapped me and sent me out. The room was still empty when I left so I'm hopeful that there may not be much waiting but I'll find out about that in the days to come.

I stopped on my way home to see the oral surgeon for a quick check on how I was healing after the tooth extractions and was told that everything looked fine, so I think that's the end of that little chapter.

Is this fatigue?

2010-02-07T21:48:00.000-08:00

We had a nice low key weekend, during which I did very little physical work, though I did spend a fair while working at my desk and on the computer. It is a little after nine-thirty in the evening and I'm sitting here wanting to say something about outside activities but instead I'm just sitting here being tired. That doesn't seem very upbeat. I normally work until I start getting sleepy, around eleven or twelve, so nine-thirty seems way too early, but... Okay, so just a few sentences, then I'll give it up.

There have not been any physical constraints placed on my activity but it seems that my body is becoming self regulating in that if I start doing physical labor, I find that I fairly soon simply run out of energy. I've been warned to pay attention to how I'm feeling and stop and rest instead of pushing myself on when I feel fatigue, so that's what I try to do, though it sort of makes me feel like I'm just being lazy. Perhaps I'll come back to this subject some other time, but right this moment I feel like I'm forcing myself to write so I think I should act on what I've just written. Lazy or not, I think I'll go sit down in my easy chair and take a rest till I can store up enough energy to put myself to bed -- with confidence that I'll feel better after a full nights rest.

Slow Burn

2010-02-05T21:46:00.000-08:00

This afternoon we went in for my eighth radiation session, which was uneventful. Starting Monday I am switching to ten o'clock morning sessions. A hole in our mornings just seems more convenient than a hole in our afternoons. I would have preferred eleven o'clock but since only the ten o'clock slot was open, I took it. The clinic has a rule, mandated by Medicare, that patients must be checked by a doctor once every five sessions and they schedule that to happen on Wednesdays for afternoon patients and Thursdays for morning patients. Changing from afternoons to mornings would result in six sessions before the next normal check, so this switch required an extra check by the nurse and doctor following today's session. I saw the nurse first.

I said, "It's only been a couple of days and nothing has changed since I saw you last time."
She replied, "It looks like you're getting a little red on the side of your neck."

She apparently has had more experience than I have and knew just what to look for. I looked in the mirror when we got home and by looking carefully I could see that she was right. It looks like just a slight bit of sunburn and when I touch the right side and then the left side, the left feels just a little warmer. So I guess all those high intensity x-rays they are zapping me with are actually starting to do something. That probably means that my body is also starting to expend more energy trying to heal the damage, so maybe the slight feeling I have of having a bit less energy might not be all just my imagination. I'm happy to again report, even so, that I'm still feeling fine and am looking forward to the next couple of days off.

Oral Hygiene

2010-02-04T21:53:00.000-08:00

I'm delighted to say that my ability to taste is back to about 90% normal now and I expect to be fully recovered by tomorrow. Apparently it was the fluoride that caused me to have that yucky taste. Now I'm back to not having any side effects and waiting to see what shows up. Well, maybe I'm having a little fatigue but that might just be all the running around or I might be just imagining it or I might even be just using that as an excuse to kick back and take it easy.

I religiously brush my teeth every morning with fluoride toothpaste and an extra soft toothbrush, floss, use a water pique then rinse with a baking soda and salt solution. The brushing and rinsing is repeated after each meal and again at bedtime. Saliva contains antibacterial properties which help reduce the formation of cavities and the radiation is expected to damage or kill my left Parotid (saliva) gland so I'm likely to have reduced saliva flow and therefore a higher possibility of getting cavities. Dry mouth seems to be pretty common for head and neck radiation. The radiation is also fairly likely to cause trauma to my cheeks, gum tissues and throat. All the oral care is designed to counteract cavities and to help prevent infections. I'm also supposed to stretch my mouth wide open twenty times, repeated three times a day, to help prevent my jaw muscles from getting stiff.

There is no way to tell how I will be affected but I figure better safe than sorry and a little extra care can't hurt, so I'm going along with the program. It seems that the Parotid glands are the two main sources of saliva but we also have a few other smaller ones and my radiation plan has been designed to concentrate on the area around the left Parotid gland while staying away as much as possible from all the other glands, so there is a chance that the loss of the single larger gland may not cause me all that much trouble.

As always, though, no one knows how it will affect me and I'll just have to wait and see what happens. The bottom line for tonight, I'm grateful to be able to say, is that I'm feeling fine and staying generally optimistic.

Oh yuck, our well water has gone bad.

2010-02-03T22:09:00.000-08:00

We live out in a rural forest setting and are lucky to have really good well water at our house, or at least we used to.

Today was another of what I now think of as a standard treatment session. We also had our weekly meeting with our oncologist who queried me about any changes and I had to tell him that there has been no symptoms of any side effects yet, that everything is the same today as it was last week.

I went next to visit my dentist for a normal check up and teeth cleaning. Everything was fine, as I expected it would be. We discussed the use of a fluoride cup to prevent cavities, should my saliva be significantly reduced by the loss of my Parotid gland and he suggested waiting to see the affect of the radiation before deciding. He did give me a fluoride treatment while I was there though, having me rinse my mouth for a full minute with a fluoride solution a couple of times and then sent me home with instructions to wait thirty minutes before eating or drinking anything.

A half hour later I rinsed my mouth thoroughly and was dismayed to find that our sparkling well water tasted like salt water that had somehow managed to turn rotten. Not pleasant, that's for sure. Marie happened to be drinking a glass of water at the same time and she thought it was just as good as always. How could she think that when it was so disgusting?

It must have been the fluoride treatment then, right? Did something to my taste buds, right? I know the radiation will probably affect my taste eventually, but not yet and not so suddenly, will it? Now I seem to remember reading somewhere about somebody's radiation and them saying that their taste suddenly went bad.

So it's 10:00 P.M. now and I just went and had another drink. Okay, it doesn't taste normal but it's not nearly so bad as it was, so maybe it's getting better and it was the fluoride after all and maybe I'll be back to normal in the morning, or maybe not. I'll ask about it tomorrow if it's still bad but until then there's not much to do but wait and see.

I hate all this not knowing. The engineer in me wants to know exactly what's happening, exactly how it should be and if it isn't that way, then how do I fix it. I guess maybe the engineer in me should turn this whole ongoing experience over to the other side of my brain.

One week down and getting boring

2010-02-02T22:24:00.000-08:00

Today's session finished the first of my six weeks of therapy, so how am I feeling? Getting kind of bored with it all, to be truthful, though I do still have some anxiety about the pending side effects, of which there haven't been any yet. One of the pamphlets we have been given says that side effects usually peak after two or three weeks of treatments, but nobody really knows when they might start, as it is different for each person. One might infer that if they could peak after two weeks then they should appear sooner than that but I won't be disappointed if that's not true. They also say there is a substantial variation in the number and severity of the side effects, so maybe I'll luck out and be on the light side.

At least I'm not having the slightest problem handling having my head locked to the table during the treatment sessions. It was easy to imagine the possibility of some kind of panic attack, but except for one slight twinge for a few seconds during the first session, it's been fine. It is almost turning into a short little meditation or relaxation session, during which I sort of become one with the mask. Even though my head is tilted slightly back, it's still quite comfortable and I start relaxing myself as soon as I'm fastened in. They dim the lights during the session (I'll have to ask why sometime.) and play soft music and there's nothing for me to do but just lie there quietly. I don't even have to work at holding still, as the mask takes care of that. I have little doubt that if the sessions were five minutes longer, then I would end up going to sleep.

Comments on making comments

2010-02-01T21:37:00.000-08:00

Today's session was an exact repeat of last Friday's, so I thought I would make today's post a quick little tutorial for leaving comments, since there have been some questions.

Leaving comments is much appreciated and fairly easy to do. You will see a comment link just below each post such as this:

Clicking on the comment link will open that post and it's comments in a new page which will include a "Post a Comment" window at the bottom where you may, of course, post your comment. Under the comment window is a "Select profile" box, like so:

Select one of the accounts listed if you want to have a link to that account included with your comment. I would hope you would at least leave your name so I'll know who you are, and to do that, select the "Name/URL" option. That will bring up a window asking for a name, which can be whatever you want but hopefully will be something that I will recognize. Just leave the URL entry empty and it seems to work fine. Obviously, select "Anonymous" if you prefer to remain unnamed, and I'll still welcome your comment.

The 800 pound gorilla

2010-01-31T23:36:00.000-08:00

The radiation therapy is only five days a week and this was my first weekend off. I figured that after three sessions I had the routine down and after worrying about this whole business for over two months now, I would take the weekend as a break and spend a couple of days not worrying about any of it.

That plan both worked and didn't work. We had a number of activities, both chores and recreational, that kept us somewhat busy but with plenty of "taking it easy" time too. I found that while I was actively engaged in any activity then I was not worrying about the cancer or treatment issues. However whenever I stopped being active my mind would immediately switch over to that 800 pound gorilla that seemed to always be in the room, staring right at me.

I suspect that my problem is still the unknown issue of exactly what my side effects will be. I can be told all about what to expect and I can read all about what others have been through but until it happens to me, it's still just stories. I'm not suggesting that the input I've received hasn't been helpful. Quite the opposite. I suspect that I'm about as well prepared as I can be but I still remain a bit apprehensive. I suppose that is rather normal and to be expected.

I remember going kayaking, long ago, and having a friend telling me how the river would be, describing where the biggest water would be and even giving me specific advice on what to do as I went through the rapids, but none of that kept my stress level from rising and the adrenaline from surging as we heard the water's roar and saw the spray approaching. I think my current situation is a lot like being in a kayak on a stretch of the river where you cannot get off. You may have fair control over your destiny by judicious paddling but regardless of what you do, you still have to go with the flow until you've made it through the rough water. So I'm doing everything that's been recommended and will do my best to adapt to whatever my particular situation might be. I tend to be optimistic by nature so will hold to the believe that I'll find smoother waters downstream.

This might be a good time to note how tremendously grateful I am to my wife, Marie, that I'm not making this trip alone. I am so thankful that I have such a loving and caring partner along for the ride. When she's with me, it seems the gorilla tends to step outside.

Day three and in the groove

2010-01-29T22:22:00.000-08:00

Today Marie and I walked into the cancer center and two therapists came to get me before I could even sit down, so I went in leaving Marie chatting with the receptionist, both of them being active in arts and crafts. I was quick to state my name and birth date, and they were just about as quick to fasten me in, zap me, unhook me and send me back out. Marie had been passing the time working on a group effort jigsaw puzzle and we left about fifteen minutes after we arrived. It looks like most sessions, including the driving, will take less than an hour and a half, which is certainly an interruption in our day but not really that bad.

TGIF and now we get a couple of days off.

Day two

2010-01-28T21:41:00.000-08:00

I can see that the treatment sessions will quickly settle into a very repetitive and probably boring pattern and this is likely a good thing, the not having any surprises.

The first thing that happens in the radiation room is that they ask me to take off my glasses. I'm nearsighted so although I can move around just fine, I'm not able to see details at much distance. This is why I guessed at Christmas lights in the ceiling, but a better look today indicated an arrangement of fiber optic panels which fits in much better with all the high tech gear than a string of Christmas lights would.

Even though they know exactly who I am, they still ask for my name and birth date every time before doing anything and it's comforting to see that they're rigorous about being careful. Today they gave me my ear guard, mouthpiece and tooth shield, waited till I had it all in place, then asked me to tell them who I was and when I was born. A little sense of humor there, I guess. Lucky for me, they somehow seemed to understand my muffled and mumbled response. Might not be much fun to get some other patient's treatment.

I asked about the soreness I experienced yesterday after my treatment and was assured that it almost certainly was just a short term pain that sometimes occurs while healing from any surgery and was unlikely to be due to the radiation. I'm happy to report that there was no recurrence today. I might not have even mentioned it except that the nurse had told me that they wanted to know about everything, even if I didn't think it important.

I came to realize this morning that I felt good and was anxious to get going and get to work on some of my pending projects. I mention this because it made me realize that I have not felt that way for some time now and I'm thinking that the whole process I've been going through has been causing me a lot more stress than I realized. Perhaps the difference now is that all the preliminaries are over, the fear of the unknown has been removed and there's nothing to do now but go through the therapy till it's done. Kind of like I've made it to the train station, found my seat and am now settled in for the ride. I know there are going to be a number of side effects to deal with but I have the feeling or at least the hope that all the information that has come from the cancer center staff has allowed me to be fairly well prepared for what's ahead, particularly when complemented by the available internet articles and especially by the personal accounts I've discovered.

Okay, now it's real

2010-01-27T21:14:00.000-08:00

First radiation treatment today. I laid down, was fastened in, a few x-rays were taken at the appropriate lower power setting, the positioning was deemed correct and then the treatment commenced at the appropriate higher power setting. It was much like yesterday's session, though setup went quicker and the actual treatment took longer being a little less than a minute at each position, with maybe six or seven positions. I felt fairly relaxed and just sort of existed during the first few minutes, passively observing the machine as it rotated around me to various positions, stopping at each spot and emitting a high pitched buzzing noise. After a little while I wondered how long the beam was active each time so I tried counting seconds and got to about 45. I had both read and been told that I would not feel anything, and I didn't. There was just the noise and movement around me as I laid silent and still.

I have to admit that I did visualize, for awhile, those invisible radiation beams zapping into one side of my head and out the other, but then I just sort of zoned out till it was over. They have all these twinkling lights up on the ceiling, (Christmas light strings I would guess) and I just laid there watching them. Was I relaxed? Well, if the treatment had lasted another five minutes I probably would have dozed off.

There will be a weekly meeting with a nurse and the doctor and today was the day for this week, so they brought Marie (my wife) in and went through a bunch of questions concerning my reactions to the treatment: pain, skin problems, mouth problems, etc. But since it was only five minutes after the first session, I didn't really have anything to report.

Now, at 9:00 PM, I'm feeling a slight soreness under my left ear where the tumor was, and I'm trying to decide if I'm just imagining it or if it really is a little sorer than it was yesterday. I'm really just not sure. I'll ask tomorrow if I could respond that quickly, and I'll also start paying a lot more attention to just how my body is feeling.

One down and twenty-nine to go.

Radiation day minus one

2010-01-26T15:29:00.000-08:00

Today was kind of like a practice session. They started by heating up a glob of plastic until it was soft, then they shaped it a bit and stuck it as far in my left ear as they could. I’ll be wearing that during each session in an attempt to reduce the radiation dosage to my auditory structures and hopefully minimize any hearing loss. Next they cut out a piece of lead and covered it with dental wax. I’ll be sticking that in my left cheek over my teeth, again in an effort to reduce the radiation to my teeth and gums.

With the ear plug in, the mask mouthpiece in place and with the lead shield stuck in, I laid down and was positioned just so by checking a laser beam on my chest tattoo. The machine looks pretty much like this one. The table lifts up so the whole front section can be rotated around to different positions.

The mask was then fitted over my head and locked down and they started taking some x-rays, recording various measurements and taking digital pictures. Once the doctor verified that all was okay, they then drew an outline of the radiation target on the mask along with some positioning reference points.

So now I’m good to go and will be back tomorrow afternoon for the first actual radiation session of the thirty scheduled.

"A Touch of Cancer"

2010-01-24T00:08:00.000-08:00

I was just looking through another blog (randyshealth.blogspot.com) and found a statement that describes my feeling exactly. Randy said, "what I came to see was that, in truth, I am a very healthy person who happens to have a touch of cancer."

There seems to be many people, including Randy, who manage to maintain a positive attitude while having a much worse diagnosis than mine so I see no reason why I shouldn't be able to do the same while dealing with my "touch of cancer."

Pre treatment checkup

2010-01-22T22:16:00.000-08:00

The diagnostic CT scan showed no spread to any lymph nodes, the dental healing was judged adequate, and the radiation mapping has been completed, so I'm cleared to go. There is a simple dual beam radiation plan and a more complex one which does a better job of covering the tumor area while avoiding the jaw area, so I'll be getting the complex treatment. Tuesday they will do a dry run, only taking x-rays to verify the plan's positioning. The first radiation session will be on Wednesday afternoon.

I am in the habit of allowing myself some personal quiet time in the early afternoon when I may just rest, take a short nap, listen to some music or read for a little while. Now it seems my quiet time will involve laying under a radiation machine and will be preceded and followed by a half an hour of driving.

Pre radiation dental work.

2010-01-13T21:52:00.000-08:00

I called the oral surgeon first thing this morning and was told that if I came at noon, they would squeeze me in -- so I did and they did. Those two pesky molars are gone now and though it wouldn't rate as one of my favorite things to do, the extractions went quickly and it was a fairly easy procedure. I am expecting that the almost two weeks I have to heal up will be adequate and I now have nothing to do except wait.

Diagnostic CT Scan

2010-01-12T22:25:00.000-08:00

We went to the hospital today for a diagnostic CT scan and chest x-rays using a machine very much like this one, which is also like the one used for the data gathering scan done earlier.

They hooked up an IV and injected a dye to highlight my blood flow. This was an easy session and all the hospital personnel were very friendly and considerate.

We then saw our dentist and I was referred to an oral surgeon for removal of the upper and lower rear molars on the left side. They have been bothering me for a couple of years so I am not too reluctant to have them removed, hopefully soon, so as to provide enough time for healing before the radiation starts.

Mask building.

2010-01-11T20:38:00.000-08:00

I've now seen the pathologist's report and the diagnosis was a low-grade adenocarcinoma having some features of an epithelial myoepithelial carcinoma (high-grade), which prompted the radiation therapy recommendation.

Today I got my first ever tattoo. It is a tiny black dot right in the middle of my chest. You have to look carefully to even see it. A drop of black ink followed by a poke with a needle. Ouch! It felt more like a horse needle or a stab with a sword. Don't guess I'll ever be getting any real tattoos. Now they can shine a laser down and position me so it hits the tattoo to make sure I'm in exactly the right position.

They also fitted me with a face and shoulder mask similar to this one:

It is a flat sheet of plastic mesh which they heat in water till it's soft, then mold over the head and shoulders. It was kind of warm and cozy at first, but then after it was locked down to the table, I had to sort of remind myself that I was not claustrophobic. Once I accepted that, I was fine. Then they ran a CT scan to gather the data for creating my radiation plan.

Cancer

2009-12-24T17:23:00.000-08:00

The local lab could not make a definite determination of the biopsy sample, so they sent it to a specialist who also had a hard time interpreting the slides. The eventual conclusion was not 100% certain but indicated a probability of a low grade malignancy resulting in a recommendation for radiation therapy, so I now have an appointment for a consultation with an oncologist for next week.

"Merry Christmas. You have cancer." Not what I really wanted to hear on Christmas Eve. Okay, of course that's not what the doctor actually said, but that's what I more or less heard. Enough of that. I probably need to make an extra effort to stay positive despite the fact that that's my normal nature anyway. Like now I'm thinking I'm glad I found out about it before it got to be too late. However this is still starting to be a little scary and I'm feeling rather ignorant about it all, but none the less I'm going to hold to the idea that very little, if any, of the tumor remains and whatever might be left will be adequately destroyed by the radiation. I'm trying not to spend a lot of time worrying about it, although I have to admit it's hard not to keep thinking about it.

It occurred to me that it might be good to keep track of what gets done to me and how I react so that I'll have a record of the details in the years to come and that gave me an excuse to investigate keeping a blog so I'll try that here and see how it goes. I entered the previous two entries backdated to preserve the timing.

Parotidectomy

2009-11-19T22:46:00.000-08:00

The tumor caused no pain or particular discomfort so it had been easy to ignore, but by now it was becoming just a little annoying. I asked about it during my yearly physical and was immediately referred to an otolaryngology (ear, nose & throat) doctor who then scheduled and performed a Parotidectomy. The surgery was completed without any complications and no damage to the facial nerve, which was my biggest worry. A biopsy was sent out for diagnosis and I was told that a malignancy was very unlikely.

I have a Parotid gland tumor.

2002-08-15T13:00:00.000-07:00

A lump just below my ear (on the Parotid gland) prompted me to see a doctor. Two biopsies were taken and both came back inconclusive so the doctor suggested that because it was growing very slowly and was not bothering me, I should just monitor it and let it be. I wasn't particularly concerned, so accepted his suggestion, though that may not have been the best advice.