In our last episode of visiting the medical staffs at various doctors’ office, yours truly promised to keep using the tube and pour a couple cups a day down it until the scales stabilized. I have to confess that’s one promise I’ve not kept. I’m not entirely sure why this is the case except for the fact I can’t stand using it, the formula makes me queasy (or worse), and now that I’m eating more real food, it smells worse than it used to when it was only formula going down. Smell, you ask? Why yes. Because the tube basically goes into a hole in your gut that’s continually trying to heal itself, you not only get gunk around the tube itself – this is why it always has to be dressed and can’t just lay against the skin – you also get a small but continuous amount of gas escaping from around it. Now, this is not noticeable, really, to anyone but the person carting the tube around with them all day long. Namely, me. And I’m getting pretty sick of all of that plus having to constantly readjust it around my neck to avoid having it get tangled up with itself. It’s painful, even after all this time, and it’s a little odd to be talking to someone and trying to adjust the tube at the same time. They always wonder just what it is you’re doing with yourself there – not quite the faux pas of a baseball player adjusting himself on national television, but annoying and sometimes embarrassing anyway.

So I’m considering going forward with scheduling a date to have it removed. Unfortunately, that date will have to be after the big bash on Memorial Day weekend, and I know I will be out of commission for the day after it’s removed and possibly for part of the next day since the procedure is almost the same as when they put it in. Nothing like being pumped up with air like a ballon and then having to let the air dissipate naturally. It hurts and I hate it, but there’s no way around it in order to get the tube removed.

I know this is going to be a bone of contention with those around me, and it was a lifesaver during and after treatment, but at this point I simply think it’s time for the tube to go.

Today I had another followup visit with my ENT, who did the surgery on my tongue and neck. That’s the thing about cancer – it’s almost like a lifetime of followups after treatment, although the span between followups gets longer and longer as you go along.

Within the past couple of weeks I noticed a bump on my tongue, near the back. It isn’t painful in and of itself, but it rubs against the back of my palate, which makes that spot red and sore. Since my followup was coming, I made a mental note to ask him about the bump while he poked and prodded,

He looked at it, gave it a poke (which didn’t hurt), and said it looked like a granuloma – a benign tissue growth that occurs due to trauma/healing. But, naturally given my recent history, we had to have a sample to send off to the pathology lab.

People think of “a sample” and think it’s just a minor thing, a piece of flesh to be passed along, and off you go. Would that it were so easy. Would you like a step by step? Sure you would.

First, in my opinion, pain in the mouth is the absolute worst. I’ve had knee injuries, wounds that required debriding to remove gravel and clay, pulled muscles, and so on – the consequences of an active and athletic life. But I’ve always disliked dental work in general, and then this cancer business demonstrated to me that for me, my opinion is spot on about pain in the mouth area.

So, first we get a spray of a numbing agent on the tongue. This is just to help calm things when the doctor then pulls out the syringe of novocaine. The needle is a small gauge needle, but that’s no consolation when you get injections directly into the tongue in multiple places. Since my tongue (still) has not fully healed from radiation, this results in multiple bleeding areas as it’s still very sensitive.

Then, we wait a few minutes while the novocaine kicks in. During this time, they gather their rather scary-looking instruments, the bottle to hold the samples, and, in my case, lots of gauze to blot the blood. Also, swabs, peroxide, and silver nitrate (used to seal the wounds).

The samples. I believe I mentioned way back when that the first biospy I had to endure led to a second biopsy because that doctor did not take a large enough or deep enough sample for the pathologist. This ENT, however, is much more thorough, and took half a dozen samples, all of which were pretty substantial (remember, here, that “substantial” means a few centimeters – they’re not cutting out huge swaths of tissue). I looked at them after the tech sealed the bottle and the biohazard bag, and felt good about there not being a need for another round of samples this time. He was rather surprised when we told him we had to go through it twice the first time, and said that we’d make sure it was a one shot deal this time.

After the samples, quite a bit of blotting, since by this time, my mouth is full of blood. A few swabs of peroxide, and some dabbing of silver nitrate, and that’s it. I was left with a foul-taste in my mouth – since my taste buds have been back in fairly good operation since about a month after treatment ended – and quite a bit of spit and more blood. Just as with the dentist, time to spit.

And with that, we were done. I have to go back next week for the results from the pathologisst and what our next step will be, whether it’s benign or more serious. The ENT says they can use the laser to shave down the bump and excise it, and I’m all in favor of that, as it’s the same procedure I went through originally. The lack of stitching on the wound once the surgery is completed with the laser is, in my opinion, an excellent thing. Not just because it means one less visit into the mouth, to remove stitches, but because the post-surgical swelling and healing makes a big difference in how much tissue is present as healing progresses – after all, my tongue looks like it’s missing only a little less than a quarter of its original size despite the fact that almost half was removed. Bonus.

So we’ll see wha we have here and move on. Just like always.

These images (and others) have been sitting on my camera for quite some time. I don’t know why I haven’t pulled them off before – I suppose it’s simply because I really didn’t want to look at them. You may not want to look at them, either. If you’re easily disturbed by medical photos, do not look at the extended entry. Really. You’ve been warned.

Continue reading Reliving the past →

Actually, what I said was that I was going for a pet scan.

In one of our previous adventures, BS (Before Surgery), yours truly underwent a PET scan. The only thing interesting about the first time was getting the results back to see just how much cancer had invaded my head and neck.

This time around, however, being in Recovery Mode^TM, the start of the process and the scan itself was more interesting. There’s also the added bonus of me paying more attention this time, since no Mask of Doom was required for this scan like there was for the first, so no calming potions courtesy of modern medicine were necessary..

For those who don’t know and don’t care to click through to links, when you undergo a PET scan, it’s a lot like going through a contrast CAT scan, except instead of loading you with the contrast agent immediately before the CAT scan (which really does make you feel like you’re about to wet your pants for a few seconds), for a PET scan, you’re injected with a radioactive glucose and then have to wait about 45 minutes while your body goes through the uptake. High metabolic areas are what they’re looking for on the results, as cancer cells have a higher metabolic action than normal, healthy cells.

So, as I said, another PET scan. I hadn’t noticed the first time, but the radioactive glucose they injected is a bright neon green, just like something right out of a comic book. Unfortunately, even after two of these, I’ve yet to develop any super powers like those characters in the comic books, which I think is a crying shame. Between these injections, the chemo drugs, and the radiation, I’d really have expected to get something out of it all. Oh, yeah, besides that whole “surviving cancer” thing.

I kid.

After about 45 minutes, the tech comes around and tells you it’s time for the scan. Before getting on the table, though, a side trip to the bathroom. Since the scan takes anywhere from 20 to 40 minutes, they don’t want someone’s weak bladder creating issues. Once you’ve taken care of your business, it’s off to the machine. No mask this time, thankfully, just a cradle for me to put my head in. The tech goes out and tarts things up. One thing I’ve noticed about the scanner is that it really is fairly quiet. The MRI I had many years ago was in an enclosed tube that sounded like someone was on the outside banging on it as hard as they were able with a sledgehammer. Not so with this: at worst, there’s a loud whirring sound in the open-ended tube. The most difficult part is lying as still as possible, even as the table moves back and forth within the tube when the scan proceeds from area to area. For mine, the scan was done from the top of my head to my abdominal area, with one long scan as I entered the tube, and then further partial scans as the tech brought be back through in increments. All told, the scan took about 25 minutes.

The results? Since my mouth is still healing and there’s still quite a lot of inflammation, not an all-clear, but the results were quite good: the left mouth area went from a metabolic activity rate of over 20% to just around 7%, which is almost certainly due to the aforementioned inflammation and continued healing. The neck showed nothing. Nada. Zilch. So the surgery, the drugs, the radiation, the pain, the vomiting, the scars, the eating via tube: all worth it.

Now, if the healing would speed itself up just a bit so I could eat again…but, as everyone keeps telling me, time will take care of that. And thanks to the most excellent care I’ve had, time is something I do have.

Ever have a goal that kept shifting on you, dancing around like some crazed sprite, daring you to capture it?

That’s how I’m viewing my goals right now.

When we finished up radiation, as horrible as I felt, I figured a couple of months of healing would at least enable me to start enjoying some soft foods once more, even if full-fledged dining eluded me for awhile longer. Wrong. I have managed to sip some tea every now and again, and take in a few spoonfuls of soup, and that’s it. The past few days, my tongue actually started bleeding – from nothing, really, and I’m guessing it’s just one of those ‘healing” things – and I wound up spitting out bloody mucus all day long, for three days. Icky. That, thankfully, stopped last night, but tonight I found out an interesting fact: sneezing is not good for the healing tongue. One little sneezing fit tonight broke something open again, but luckily it was minor and stopped bleeding fairly rapidly (as far as these things go).

In any case, my original goal had been to be able to eat something by Thanksgiving. That quickly gave way to Christmas, considering how radiation keeps doing its thing for some time after treatment ends. I revised my goal, because I’m flexible that way, to the end of January. here we are, and I can tell you, it isn’t happening. So I’ve revised that goal again, to Memorial Day, which – for those of you who don’t keep track of US holidays – is at the end of May.

Why the long forward-looking period, as they say in business? Conventional wisdom says a month of healing for every week of radiation. Yes, it really is that bad. So, for me and my six and a half weeks of treatment, that amounts to six and a half months. Far longer than I expected or wanted, bu there we are. on track from the end of my treatment, that puts us in the first half of May. I figure by that time, I certainly should have been taking in soft foods at least (at least, I hope so) and it should put me in good shape for regular food. Besides, I really love spring and summer down here, becaue we get the greatest produce. There’s nothing like a big beefsteak tomato with a little salt and some fresh zucchini and squash, sauteed with a little olive oil, salt, pepper, and maybe some fresh grated parmigiano-reggiano on top. Delicious.

I’d like to start cooking again, too, but it takes a lot out of me right now, strength and energy-wise. So far, I’ve made two batches of guacamole for the fam, who enjoy it very much. I foresee another batch for next Sunday’s Superbowl. Too bad I can’t taste it for myself – I have to rely on what they say. Anyone who loves to cook will tell you hard difficult that is.

The worst thing about all of this is the loss of independent functioning. Not to say that I’m not doing anything myself – after all, I can walk, talk (after a fashion), and can feed myself through my handy tube. But, I still can’t drive, since I don’t have complete range in my neck and because driving, like anything else, takes energy. Can’t do my own laundry. Need to have someone keep track of feeding me and how much I’ve had during a day, since my schedule tends to be odd due to frequent naps. Can’t shower when no one is here, in the event I fall or run out of gas at the very end when getting dressed (which happens, from time to time) and need some help getting settled back in. Have to have someone travel to the NOC with me when we get new servers in, since I can no longer lift the piddly 35 pounds that each server weighs. It’s a bit frustrating. This, as they say – and we all know how “they” are – will get better with time. Just like everything else related to this little interruption in my life.

So what have I been doing? Working. Sleeping. Eating, my way. Lots of doctor visits, of course. The end of a year and the beginning of the next are busier than normal, since that’s the time when you have to run employee W2s, file end of the quarter and end of the year paperwork, and put things together for taxes for the business to turn over to the accountant. Some people just don’t understand that when you’re self-employed, it doesn’t mean you’re perpetually on vacation or that you can just drop everything and go off on vacation for a week and be out of touch – at least, not in this business, you can’t. On the other hand, as long as the coverage is there, it is possible to get away from it for awhile and go to a show, or eat out, or just relax and read a book. The business has been at that point for awhile, and it’s a good place to be, even if some people still don’t quite fully grasp the concept – and even if for the past seven months, I haven’t been able to avail myself of it except for things medical-related rather than fun-related. Still, life is good – or, if you like, la vita è bella: I’m alive and healing (albeit more slowly than I’d like), I have a great family who are all self-sufficient and healthy, and I don’t have to constantly think about entertaining someone other than myself, being single and all.

So there we stand. I keep telling myself to update the page, but how many times can you tell people you’re still eating through a tube? Commenting about politics is definitely out the window, because it’s depressing to me what the country has come to and because there’s always the chance someone will get their knickers in a twist and be offended – and frankly, I’m really not interested in debating that sort of thing with anyone who can’t see any viewpoint but their own or who takes it as a personal affront that you disagree with them. Been there, won’t do it again (and that goes for dating anyone like that, too!). But there are other topics, and with any luck, I’ll finish up my end of year/beginning of year todo items and be able to get some regular updates in place (and maybe even make a link list, finally).

Have a geat day, everyone.

When we left our intrepid heroine last season, she was counting down to the end of chemo and radiation treatments. We now return to our regularly scheduled program, already in progress.

I finished chemo on October 19 and completed radiation on October 24 – one week before Halloween. The techs gave me the Mask of Doom as my special parting gift. I plan to hang it up on the wall somewhere as a reminder of this period in my life.

As anyone who has ever played sports or engaged in serious physical exertion – like climbing mountains – can tell you, there comes a time when you hit the wall. If you’re not familiar with that phrase, in sports it’s the point where your glycogen stores bottom out and your performance starts to drop off. In certain types of life situations, especially when someone is going through a period of extreme stress, it’s generally the point where you’ve reached the moment where you don’t think you can continue.

Around the end of the fifth week (of seven) of treatment, I hit the wall. It seemed like I was nauseated every waking moment, vomiting on the hour, and tired to my bones. At some point during that weekend, while clutching the bucket that was my constant companion for months, waiting for the then-current round of heaves to subside, I told my mother I didn’t think I could make it through the next two weeks of treatment, and what would happen if we just stopped? I was miserable, the radiation burns on the horizontal incision on my throat were by turns oozing and then creating scabs that pulled taut the skin surrounding them, there were bloody striations on the roof of my mouth, caused by the radiation and its buddy, mucositis, I hadn’t taken in anything by mouth (and still haven’t) since late September, my body was weak, my mind was having difficulty concentrating, and I was wondering if what I was going through was worth it.

I got over that wall, by sheer force of will – both my will and that of the people around me, including both my family and the great, caring medical people we encountered during our travels. I started crossing off the days left on a calendar, to remind myself every day when I dragged back to my mother’s house that this was a necessary but temporary process.

And then, before any of us realized it, the last day of treatment arrived and it was over.

Since, as they say, radiation is the gift that keeps on giving, the side effects lingered after treatment completed. One particularly nasty side effect of radiation to the mouth and throat is mucositis. This is what turns your mouth and throat to hamburger, and in the last two weeks of my treatment, created ever-increasng amount of mucous that I was forced to spit out, either by rinsing or by spitting into tissues. In the week following the end of tretment, the problem became even worse, and at one point I was going through an entire box of tissues per day, because I was spitting out gobs of this stuff every five to ten minutes. The good news is that the lining of the mouth is fairly resilient, and this side effect passes on its own. It is down to manageable levels for me now, not nearly as horrible as it has been the past couple of weeks. As it slowly fades, I now have to learn to swallow all over again, which brings us to another issue.

As I mentioned, I’ve not taken anything by mouth since late September, My swallowing is quite the visible effort to others, and I feel as if there’s something caught in the back of my throat each time I do swallow. It’s a little scary to think about trying to drink a ilttle sip of water or maybe swallow some broth, because in the back of your mind, you’re wondering if you’ll be able to get it down without choking and then aspirating it into your windpipe – a common problem for people who have undergone this sort of treatment. Many people go for swallowing tests, where you swallow various things while a flouroscope is in front of you so the doctor can see how your body handles it. I’ve not done this, and hopefully will not have the need. I was rather hoping to be able to eat something at the Thanksgiving dinner that my mom is having for the family, but alas, it looks as if my Thanksgiving dinner will be supplements poured down the tube. Not exactly turkey with all the fixings, but one step at a time.

The burns have almost all healed. I have one spot under my chin that is still scabbed over, but the only reminder of the horrors that were visited on my neck by the radiation is peeling skin of the sort you get after a bad sunburn. My neck is pretty stiff on the left side, from both the surgery and the treatment, and I’m working on slowly stretching my neck. I have almost all the feeling back on the left side of my face, neck, and shoulder as well, although there are still areas that are only dully awake.

And here we are. I still have various doctor visits to make for followups. A CAT scan will probaby be in the works for January, to check for things that should not be there. Right now, though, I’m concentrating on getting my strength back, trying to take in enough calories per day to not lose any more weight (23 pounds lost in total for me since surgery), and returning to the more social life I’ve led in the past year instead of working every minute of every day, although working more hours is certainly another thing I’ve been doing as my energy returns. I hope to be eating again soon, to return this blog to its intended purpose, rather than serving as a blow by blow of what its like to go through treatment for oral cancer. Then again, it’s served as some good in that capacity, from some of the emails I’ve received, showing that even though we may have to (temporarily) change our plans from time to time, there can be usefulness in that side path.

Cheer.

Anyone up for a little breakfast?

Down the tube

Nothing but gut

Yummy, don’t you think?

Been awhile, eh? Thought maybe I’d kicked off this old world and headed off to the beach somewhere?

No way.

Last week was fairly hellish, from a health point of view. Not eating enough (too much nausea), too much puking (ditto), and just not feeling it. Dropped the pain patch, though, and that seems to have made a tremendous difference in the nausea factor – meaning I only need to take three different things to keep the rolling under control.

Still not eating – or, rather, feeding through the tube – enough. We’re guessing that I’m getting about 1000 calories a day on a good day, and maybe 500 on a bad. Not enough, but I swear once I get finished with treatment and get this damn tube out, I’ll be much happier about eating that I am right now.

Still, the other numbers are making me feel better.

1 – the number of chemo sessions left
7 – the number of radiation treatments left
14 – the number of amifostene shots left

There will bemonthly visits to the various doctors over the next year, then every two months the following, then every three the third, and so on, until we reach the magical five year point, when we’ll just visit once a year.

The medical bill numbers keep going up, too, but that’s to be expected and I figure we’re nearing 100K now with everything, but not including the facilities charges for the radiation treatments themselves. We’ll see what they come to at some point.

They’ve changed my radiation treatments this week as well. Instead of treating three locations (right, left, top), they are now treating five – two more lateral (left/right), except with electrons. This is to the spinal area, and the reason they do this, so they tell me, is so they can treat the posterior spinal area without hitting the spinal cord, since electrons do not travel so deeply as the general wide field radiation does. A long as they don’t turn me into Quasimodo, I’m agreeable.

Tomorrow will be a long day on the table as they continue to shrink the treatment areas, which means more x-ray films while I am in lockdown. This is also apparently a normal course of action as you move to the end of treatment. It simply makes for a long, tiring day with all the machinations and the Xanax it takes to stay calm while the techs do their awesome job.