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.

Death and taxes. So they say.

As to the first – well, I’m not dying anytime soon unless I get run over by a bus or something, so I can leave that one alone for awhile. I felt a bit like I was over this past weekend, as I constantly heaved my guts into my ever-present bucket. I decided, though, that it was probably the pain patches (Fentanyl) causing the nausea to be worse than usual, so I took myself off of those on Monday. That increases the pain factor, but the gut-wrenching, make-you-want-to-die nausea is so much worse that I didn’t care.

As to the second – well, it’s the end of the fiscal quarter, so time to file all the required paperwork for the business and pay the payroll taxes on the staff, all of which I completed today, well before the deadline. Yay for me.

While the weekend was horrible, and I had a couple of bad days when I thought I couldn’t get through the last of these treatments, Monday was better and the days since even more so as my family pep talked me into getting into a better frame of mind, not to mention getting some calories down into me. Between Friday and Monday, I probably took in about 500 calories total, since I was puking up half of what I ate. Since then I’ve been managing between 500 and 800 calories a day, which still is well below what I should be eating (somewhere around 2200 calories/day) but better than starving to death.

Those calories, beyond the occasional spoonfuls of ice cream, are all going down the feeding tube. It’s still a very weird sensation to have something dripping directly into your stomach, but with three different antinausea drugs, at least it’s staying there now. I have developed a fungal infection in my mouth which is quite common in this sort of treatment, and that’s being treated with Diflucan. Fortunately, we’re at the end of week five now, with only two more weeks to go. I think between all the support from family and friends and the drugs, I’ll make it through the rest.

And the drugs! I have bottles lined up like soldiers, awaiting their marching orders. I finally gave in and asked for a prescription for Zofran, the big daddy of antinausea drugs, and shelled out $700 for 30 4mg tabs. Well worth it, let me tell you, in combination with the Ativan and Compazine. I’ve also been swallowing (well, tubing) Guaifenesin syrup to help with the thick mucositis that is also a common reaction to radiation to the mouth and throat, along with Benadryl allergy syrup, which helps dry it up a bit so I can sleep without choking on what would otherwise build up in my mouth.

Sleeping itself is becoming an adventure. I will sleep for a few hours after treatment, then get up and feed, but later, when it’s time to go back to bed, I’m so restless I can’t sleep. So, since I’m not on the pain patch any longer and still have some left, I dump a teaspon or so of Roxicet left over from the surgery down the tube and let that kill some of the pain and put me to sleep for about five hous or so. I keep thinking I should be sleeping more from all of this treatment stuff, but it’s not happening.

Only two more chemo rounds and 11 or 12 rad treatments left. The rad treatments have altered a bit as of Wednesday, but that’s a story for a new entry.

With PEG, that is.

Every Wednesday is chemo day, so we spoke to the medical oncologist about the unending nausea. They gave me some Zofran via IV with all the other drugs they give me (Benadryl, Tagamet, Erbitux, Taxotere), and that worked like a champ to calm down the queasies. The entire procedure takes about three hours or so, and toward the end, once again my stomach was waking up and making those growling noises, so they gave me a bag of Ativan as well. Since both the Zofran and the Ativan seem to work to control things – and since yours truly, with no insurance, would have to pay close to $2000 for enough Zofran to last the remainder of my treatment time – they gave me a scrip for Ativan, which is cheaper ($45 for 30 pills, brand name). As long as I take it every four to six hours, I’m golden. I can even actually eat soft things and flush the feeding tube without feeling an imminent reversal about to occur.

So for now, PEG will remain with me. As the back of my throat is a little sore, this is probably a good thing, as I may wind up needing her anyway.

The only other issue I have is with significantly thick mucous. A handy recommendation from someone else led me to Mucinex, a timed release pill that helps thin the secretions. This seems to be working to help control it, at least so that I’m not constantly gagging on the spit back there.

I’ve managed to eat some broth and drink some Boost. My sister brought me popsicles and there’s ice cream in the freezer. Milkshakes are a good smooth drink as well. On these foods, I’ll go through the remaining three chemo sessions and the remaining seventeen(!) radiation treatments over the next three weeks or so. We’re halfway home!

People have asked me what happens next. There will be a period of recovery. Radiation is, as someone pointed out, the gift that keeps on giving. It will probably be a couple of weeks at least before the burns on my neck – which are starting to appear – and the thick mucous start to go away. Taste buds generally start coming back during that period and most people I’ve heard from say they’re almost 100% within a month after cessation of treatment. The horrible rash/acne thing will disappear very rapidly after I’m off the chemo drugs. Throughout it all, I’ll probably still be more easily fatigued, sleep more than usual (even though I’m suffering from horrible insomnia right now and watching way more than my fair share of infomercials in the wee hours), and I’ll still need to go through some speech therapy to learn how to use my tongue better to improve my speech, although it’s not bad enough that no one can understand me. There will be periodic CAT scans and possible PET scans, as followups, about six months down the line, with monthly visits for the next year to my ENT and radiology oncologist so they can monitor me. As long as everything looks good, we’ll move to visits every two months, then three months with the third year, then four months for the fourth year, then every six months, probably forever.

I’m not dying of the cancer with which I was diagnosed in June, and in fact, they’re pretty sure they got it all out with the surgery. We’re pursuing the most aggressive treatment because of the type of cancer, which is itself very aggressive, my lack of risk factors for actually getting it in the first place, and to make sure that nothing miscroscopic escaped. All in all, would I do it again? You bet. The alternative would have been to passively rot away from something that could have been treated. That, as they say, is not my style. I’d hope it isn’t the style of anyone passing through here, either.