Anyone up for a little breakfast?
Down the tube
Nothing but gut
Yummy, don’t you think?
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?
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.
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?
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.
As promised, another photo show. This time, the pictures are of the techs locking me down in the Mask of Doom.
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.
Last week, as you may recall, I headed over for the loading dose of the program drug (erbitux).
I didn’t have any of the severe reactions to the drug, like shortness of breath, difficulty breathing, or death. What I did get the next day was the horrible flu-like symptoms. On Friday, though, I got one of the most common reactions: rash. It’s an acne-like rash that really looks like you’ve just entered puberty and the fun hormonal stuff that goes with it – although I have to say I never had anything this bad at any age. On the face, it really just looks like a horrid case of acne. I’ll post an image of that later – for lovers of b-grade horror flicks, it looks like pustules on a zombie. Or the plague.
Everywhere else, it looks more like chicken pox, although you can still see the acne-like stuff up close. I’ll post pics of that as well.
It has gotten progressively worse since then, and is appearing in various degrees on just about every part of my body. The upside: there is a cream they can prescribe to try and keep it in check so you don’t look like one big pimple, as Rita puts it. Unfortunately, virtually no pharmacy carries it, so it has to be special ordered.
This week, starting on Tuesday, we began in earnest with the full treatment.
Tuesday was measurement day, wearing the Mask of Doom. The outside room, where the radiologists are, is quite high tech. Computers control positioning, dosing, movement of the machine, and there are a couple of monitors looking down directly at the patient at all times. The techs also have an intercom so they can talkto you while you’re locked down on the table. I asked Peggy (the radiology tech on duty Tuesday) if I could take a picture of the machine – a linear accelerator, for those into technical terms – and she said go right ahead. So I did.
The headrest you see has locks around it. This is where they lock the mask down over your head and shoulders to keep your head from separating itself from the rest of you. Or at least to keep it still.
Peggy took all the measurements and then took a couple of xrays so the doctor could verify exactly where they wanted the beams to go based on the fact that I am currently cancer-free and this is more of an aggressive preventative thing than anything else. The entire process for this actually took longer than a regular treatment takes, due to all the moving, marking on the mask, shifting, etc. Xanax, however, is my friend. I’m going to try to get my mom to take a shot of me locked down to the table on Thursday, just so people can see what it’s like. Treatments will run about 10 minutes in total on days where they don’t need to adjust anything or take more film.
Wednesday, it was back to chemo. I learned my lesson the first time around, and this time was dressed more appropriately in sweat pants and had a flannel shirt with me. First, the Benadryl, to offset any reactions to the erbitux. Then a thirty minute break while I tried to stay awake and realized that large doses of Benadryl make me have to go to the bathroom. I got Rita to unhook me so I could stumble off and do my thing while we waited. Next up: erbitux. Takes about an hour or so to drip in. Change of bags to anti-nausea drugs to offset the potential for puking from the Taxotere. Another 30 minutes for that. Then, on to the Taxotere, which took another hour or so. All told, we got there at 10 AM for our appointment, didn’t actually start the chemo until 11:30, and finally got out of there just before 2:30. The radiation appointment on Wednesdays is at 2:45. Luckily, the outpatient cancer center is right down the road from the main hospital complex, so we scooted over.
I had tossed a Xanax back shortly before we finished up with the Taxotere. Between the Benadryl, the antinausea stuff, and that, I was pretty mellowed out and ready to go to sleep when Peggy took me back to the treatment area. I took off my shirt and put on a gown, and got locked in without too much panic bubbling up at all.
I got myself zapped form the right side, the left, and then straight on, with one more xray taken at the end from the straight down view. And then, it was done. I had so many drugs in me, I think I must have dozed out for a few seconds toward the end. Next thing I knew, Peggy is snapping me out of the Mask of Doom and I’m on my way to talk to the doctor and look at my PET/CAT scans. Those were absolutely some of the most amazing things I’ve ever seen. Both scans were done with contrast. On the PET scan of my mouth, the tumor on my tongue is lit up as bright, bright red-yellow-orange in a sea of dark. The left throat also shows the nodes that were affected in that bright color. If I had a scanner, I’d ask for copies to scan and post just so people could see how cool they are.
And that was that. Off to the NOC to rack up another four servers, with one more in the pipeline, then home. Thursday, it will be time for more radiation – in fact, every weekday will be radiation, every Wednesday will be chemo plus radiation afterwards. So my schedule it set for the next seven weeks.
One note about something else that tells me how screwed up things can be. There is a drug called amifostene that is used to help retain salivary function in people who are undergoing radiation treatment to the head and neck. This is important, since when you think about it, your saliva is part of what helps you fight off cavities and other mouth-related nastiness. The doctor recommended it, it’s not forbidden on the study I’m in, so we said absolutely.
It’s an injection drug, and it’s $500. Per injection. You have to have it before each treatment. So, for 35 treatments, that drug costs over $17,0000. It’s amazing that anyone can afford any quality medical care if they have no insurance. Fortunately for me, the folks at the hospital got me into a program since I’m on this study and have no insurance, so it’s unlikely I’ll have to pay for any of that. Good thing, too, with the rest of the bills piling up. But, again fortunately, I don’t think I could have asked for a better group of people to be handling my care than those we’ve found here. They’ve all been fantastic.
Wednesday was the final visit to the ENT who performed my surgery before we get into the fun and games of chemo and radiation. It all looks good, of course, and the swelling, although still severe, will go away eventually. That’s good news for me, even though I wonder how much of that will be in the next 6-7 weeks while I’m wearing the Mask of Doom every weekday. The horizontal incision is almost completely closed, and this next week will be the end of healing for that until a few weeks after treatment ends – radiation and chemo kill healthy cells, too, so healing in the area will cease until my body recovers a bit from the treatments. I’ve resigned myself to having it not heal all the way before we begin, as there are certain time constraints we have to deal with, both for the study of which I am now a part and for general purposes, since they recommend post-op treatment within a certain period of time.
I told the doctor that the incisions burn from time to time, like a fireline lit up along each. That’s actually a good thing, since it means the nerves are attempting to repair. Of course, that healing will be destroyed by what we’r about to do, but it, like the general wound healing, will restart as we shake through the weeks following cessation of treatment.
So what poison am I referring to? The chemo drugs, of course. Wednesday directly after the ENT visit, we jumped across the bridge and went in for the first round (the loading dose). To start, Rita (the oncology nurse handling me there) put in an IV. Not in the crook of my arm where the nice big veins are, but in my forearm. This is because the first treatment was going to take about two hours or so, and the remaining treatments will take about three hours each. As she pointed out, not being able to bend your arm during all that time would be pretty lousy. It wasn’t as painful as I thought it might be, and of course, unlike some of the other people there receiving treatment (all women, interesting), I don’t have to wear my IV all the time. Several of the women had catheters (caths) in their chests where they received their drugs. Those are inserted for people who get chemo on a daily basis for whatever ailments they have.
The first bag hung on my IV was benadryl. This is to control some of the potential side effects of the experimental drug. They are more lke allergic reactions than anything else, as with any drug: hives, rash, a feeling of tightness in the throat, trouble breathing. There was so much benadryl in the bag, though, and I was so tired from having been up all day and night and into Wednesday morning dealing with the aftereffects of a DOS attack to one of our clients, that about five minutes after she hung the bag and was explaining some things to my mother and me, I could feel the sleep trying to overtake me. Apparently, my face flushed pretty badly at one point, and I could feel the heat of that, but it subsided. Once that bag was done, we waited 30 minutes and Rita hung the bag with the C225 (erbitux). I kept dozing in and out while it dripped along for an hour or so. I didn’t feel any particular side effects, and whether that’s due to my general health (exceppent except for the whole cancer thing) or due to the bendaryl is anyone’s guess.
When that had dripped out, I had to stay for another hour so they could monitor me for any reactions or problems. There were none, so they kicked me out.
It’s cold in the treatment room, and I was curled up in a blanket when my mom came back in – she had gone off in search of something to eat. But I noticed that even when we left, I was cold. As soon as we got back to her house, I changed into my sweats and wrapped myself in a blanket. Since the blanket was hard to keep on and still do the work I needed to do, my mom dug out a flannel shirt for me. Picture this: it’s about 92 or so here during the day, on average, during the summer. I’m bundled up like it’s 20 degrees outside. One of the potential side effects after treatment is flu-like symptoms: headache, chills, low grade fever, muscle achiness, etc. These should subside the further you get from the dosing. My head is killing me, and I’m chalking that and the chill up to a minor side effect of the dosing. Next week, I will get the C225 plus antinausea drugs and the regular chemo drug, Taxotere, since I was randomized into that group. That same combo will be given for the next six weeks, every Wednesday morning before I head over for that day’s radiation.
The clinical research nurse (Jan) gave me a great calendar with all my events: daily radiation, weekly chemo, weekly blood work, and a note that CAT scans may be ordered during the treatment phase if they think they need one. I’m guessing that as we really get into it, I won’t care what they want to do any longer. We begin radiation on Sept. 6 and the radiation oncologist says the side effects of that will begin to appear pretty rapidly after we start: fatigue, sunburn-like patches on my face and neck, dryness of the mouth, mouth sores, thick mucous in my mouth – all of these are potential side effects, with some, like the fatigue and sunburn, unavoidable, and others, like the mouth sores and thick mucous, potentially mitigated by certain drugs and activities, like oral rinses. We shall see. One of the possible sie effects of the chemo is hair loss, although they tell me with my dosage only once per week, thinning is more likely than total loss. I told them that Stacy promised to find me some colorful and fun ‘do rags if hair loss crept into the picture.
What now? Not much: continuing to work, of course. The college football season officially starts tomorrow (today, I guess, since even though this post started on Aug. 31, it is being posted on Sept. 1), and the pro season follows next Thursday, so it will be a lot of football and FoodTV for me in the coming two months. That would be usual, too, for my viewing habits, so I guess you could say that the treatment won’t affect certain of my habits all that much.
Shout out to those of you who may have been affected by Katrina. I know you’ll get through it, just as people always do. Survive a tragic event and then move on and continue to live. It’s the only way to go.