Resolutions

So, I made a few resolutions to ring in the new year.

Not really.

I never do, at least not for the past (mumble) years. There seems to be very litle sense in making resolutions about things you’re already working on or have no intention of doing.

For instance, I might make a resolution to get less exasperated with certain types of clients. But that goes by the wayside as soon as some jackass threatens to sue you for terminating his service because he didn’t pay for it. Or someone asks you to do something with a domain you never registered. Little things like that really puncture that sort of resolution.

I might make a resolution about eating better. But that presumes that I’m actually eating rather than pouring nutrition down a tube. And since my goal is to gain a little weight when I can eat, I picture double cheeseburgers, pizza, and fried chicken in my immediate future. After all, I lost almost 20% of my bodyweight during treatment, and some of that needs to come back. So that knocks out that resolution.

On the other hand, there’s nothing like a goal. Like being able to shower without almost falling over afterwards because I’ve used up all my energy. That’s getting much better. My mom kindly got a chair for me to sit on, so I sit part of the time and stand part of the time. Soon, standing will be all the time. Little steps, as my mom says.

And, a great piece of news, for those following the saga: the other day, I managed about eight small spoonfuls of soup (organic potato-leek). Not only did I manage to hold the soup down, but I could also taste it – fantastic news for anyone who has gone through treatment for head and neck cancer, since taste buds get zapped during radiation. I also managed to drink about a third of a cup of hot tea, cooled to lukewarm. I still had an issue with my mouth burning after every couple of spoons of soup, but drinking the tea, with lots of sugar, after those couple of bites, helped sooth things. Tonight, I managed to drink an entire cup of hot tea, cooled to lukewarm. It took almost all night, but I finished it.

So the new year is bringing progress with it. I have another followup with the ENT this month, and then a followup with the radiation oncologist in February. I also have a followup PET scan in February, to see what lights up now that we’re a few months out from treatment and recovery. We’ll see what we see at that time.

On our next episode…

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.

Counting down

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.

Two things in life are certain

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.

Coming to terms

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.

Looking forward

Since so little of this has actually been about food since I brought it back to life, I figured I’d give us all a break from the health stuff and talk a little about food. Sort of. Because everything you are informs everything you do and will do, of course there is an impact of what I’m going through now on what I’m looking forward to later.

One of the problems with getting radiation to your throat and mouth is the dampening of your taste and desire to eat. The taste buds themselves are just killed off, although they will come back after treatment ends. The issue I’m having with this is that as a result, I take a few bites of whatever, can’t really taste it, and suddenly my appetite thinks it has been sated. This, plus the general effects of treatment, is why I’m now down 14 pounds since the day I went into the hospital. I could have stood to lose a few pounds, but I can’t really afford to lose a ton of weight.

I dream about food these days, and today while watching FoodTV before the football games came on, I thought about all the things that I’m going to eat as soon as I’m able to taste things again and swallow them without choking.

Guacamole. Right off, that’s one thing I’ve been craving. I’ll be making that – and taking pictures – as soon as possible after we’re finished with all of this. And maybe a fresh roasted chicken/spinach/jack quesadilla to go along with it, with some sour cream on the side and some of my favorite sweet chili sauce.

Molasses-brined pork chops on the grill, with some steamed zucchini and onions, and perhaps some shoepeg corn.

Homemade barbeque sauce over some slow-grilled ribs, moist cornbread, and black-eyed peas.

A grilled turkey, tomato, and gruyere sandwich with a dijon-sour cream-red onion spread – this is fantastic.

Sushi. But not from my favorite sushi place here in town: this time, I’m making it myself. Even if it’s not right the first roll, the upside of all of this is that you can eat your mistakes. Maybe some tempura and dipping sauce to go along with that. I might have to move this up the list. Get some sushi-grade tuna, some crab, shrimp, veggies, and go to town.

Bread. All kinds of bread (assuming that my saliva issues aren’t so severe and long lasting that I can once again eat bread, that is). More cinnamon bread and whole wheat bread, and I could kick myself for not getting pictures of the last batches I made before surgery. Focaccia. Ciabatta.

Pastries, once my taste buds are back and I can taste sweets again. Tarts and pies and cookies and fudge. I could get into baking big time.

Homemade pork sausage, maybe with a touch of apple and me controlling the spices. Eggs benedict, with fresh hollandaise. Grits.

Fresh fruit. Fresh veggies. All kinds.

And a whole host of other things. Since I’ll be cooking just for myself, and maybe roping my family into taste testing – they’ll taste just about anything – and don’t have to worry now about food issues that belong to someone else, the sky really can be the limit. You lucky dogs will get not only my ramblings on that, but my renewed interest in photography to go along with it.

What do you crave when you’re in a mood?

Meet PEG

PEG is my new friend. PEG will be my companion for the next six weeks or so.

PEG is a bitch.

On Monday, as scheduled after radiation, I went in for PEG placement. Although I can still eat, it’s highly likely that due to the treatments I am receiving to my mouth and throat, I will become unable to eat at some point. Hence, a feeding tube is necessary, preferably before it actually becomes necessary. So, off we went to the GE (gastroenterological) Lab at the hospital for a bit of outptient surgery.

The lab is very, very cold. Even one of the nurses was complaining about it, which is rare, since just about every medical place you go feels like a meat locker. They gave me some fluids, then took me back for anesthesia. I had not eaten since Sunday night, and had no liquids since 8 AM. I was, therefore, quite hungry and very tired.

The anesthesiologist introduced himself, and said he would be giving me something to make me sleepy. I told him I was already sleepy. So he told me, ok, we’ll give you something to make you sleepier. Fine by me, I said, as long as I sleep through the whole thing. No problem.

The process, they explained, was pretty simple. They stuff a scope down my throat and look for an appropriate place to place the tube. Once they found it, they would do a little laproscopic procedure to insert the tube into my stomach and secure it inside with a small balloon. The entire procedure takes about 20 minutes or so.

Thye knocked me out, and the next thing I knew, I’m in recovery, with a tube sticking out of my gut. The papers said there may be some “slight discomfort” due to the incision and to the gas (air) they pump into you while they place the tube. Slight was a bit of an understatement.

What they did not give us was any instructions on actually using the thing, no syringes, and nothing for pain. The latter was the most important thing, as you’ll come to see soon.

After another 20 minutes or so, they let me go home. Mom took me back to her place, where I promptly aid down and tried to get a little rest. Alas, this was not to be. I had a few sips of Gatorade and water, and fell asleep for a few minutes. Half an hour later, I was throwing it up again. We tried again, this time wih water only, plus some Motrin for the pain that was rolling through my gut. That came back up as well.

By this time, the pain was beginning to be severe, with spasms rolling up through the incision area, causing me to actually cry out in pain. At some point, I finally drifted off again, only to wake up with even worse pain. I mumbled to my family that I didn’t think it was supposed to be this way, and please call the doctor’s office.

They did just that. The doctor called back, and told them to take me to the nearest ER for a contrast xray, to ensure the tube hadn’t been displaced by the vomiting.

Continue reading Meet PEG

Two fisted drinking

No, not that kind of drinking, you lushes. I’ve never been much of a drinker, as just about anyone could tell you, and haven’t had a drop of alcohol since I was diagnosed, strangely enough. It did occur to me on that day to go out and get blasted, but that sort of thing doesn’t appeal to me when I’m in good health anyway, and the sane part of my cranium took over.

So what are we drinking?

Boost, nasty chocolate-flavored, vegetable-oil filled, high calorie, no fiber, high protein drink. Sip. Water. Sip. Swallow together. It’s really the only way to get the stuff down, and has become my morning meal. Not because I can’t eat, precisely, but because it takes me so long to eat and my schedule has changed, that I would be tired out before leaving the house, just from shoving down whatever real food I may have.

And why, you may ask, has the schedule changed? Amifostene, mentioned earlier. I now have to go to radiation 30 minutes before my actual scheduled time to get two shots in the ab area (subcutaneous, for those following the technical bouncing ball). It doesn’t hurt so much – yet – as it burns when the drug goes in. Since I have to get two a day before every treatment, I’m certain that at some point my abs will feel as much like a pincushion as the rest of me is.

Since Sprint has finally kindly cooperated and allowed logins once more (they were revamping due to the merger with Nextel), here are a couple of pics for you. Icky medical stuff, so if you don’t like it, don’t look.

Continue reading Two fisted drinking

Reflections on gardening, cooking, and life