Throat Blog — Back to 1985

Well, in my morning weigh-in I got a bit of a surprise. I've lost another couple of pounds. Hopefully the better nutrition coming soon will help to stem that loss, but in looking at my weight I realized that I now weigh about the same as I did in 1985. Weigh-in was 146 lbs. Wow. I have joked in the past about trying to get back down to my high school graduation weight (which was 135 lbs), but now I'd be happy to get back up to my mid-30's weight of 160.

Let's see. How did I gain 25 lbs in just a couple of years in my late 20's? Mostly I did it by starting a serious bicycle riding program and putting on muscle and core. Now, that is not so much of an option for a while. Maybe next year. For now I'll settle for just cramming as many calories into my belly as I can stand. To that end, I've been sitting here watching the Cowboys beat the Redskin while slow-dripping a 530-calorie supplement into my feeding tube.

Weight is a concern, but not eating is a bummer. I really like food. Just look in my FB stream for food pics…you'll find many. In reading blog entries from others about the return of normal taste after radiation, I'm seeing anywhere from 4-6 weeks after treatment ends to 4-6 months to never. The nevers, though, seem to be tongue-related cancers. So, I'm hoping for the lower-end of that scale.

Oh, and have you ever noticed how many commercials there are for food on TV? Until all this happened, I haven't really watched TV for a few years. Now, I am spending way too much time watching TV. In the last hour: Pizza, sub sandwiches, all-you-can-eat shrimp, hamburgers, all this stuff that looks so good, but I know would taste so bad. Sigh.

Plenty of time to eat next year.

Throat Blog — The 2,500 Calorie Challenge

Yes, it is, indeed, a challenge. I've dwelt a bit on how tough it has become to get in enough calories. Well, this week, I hit the wall. Between the lack of flavor, lack of appetite, and not being able to swallow much, I have officially thrown in the towel as far as trying to get most of my food by mouth. This happened so much more quickly than I had expected…I really thought this would be a gradual process and that I would still be eating for a few more weeks (if not through the end of treatment).

So, Wednesday evening, after realizing I was only able to get in about 700 calories (which I supplemented with some Boost poured down my PEG), I emailed the dietician for help. Friday we met after radiation and she's ordered me a full liquid diet. I do still need to chew/swallow some each day to keep up my ability to recover, faster. But, most of my calories will be through liquid supplements poured down the feeding tube. All the hard supplies (basically an IV stand and some gravity-feed bags to pour my "meals" into) arrived last night. Today, I'm awaiting the actual nutritional supplements. While I'm waiting for that to arrive, I do still have some Boost VHC and also some additional supplements the dietician provided for me to carry me over for a day or so.

Meanwhile, I started back to work on Thursday. Mostly just catching up on what I've been out of the loop on for the last few weeks. Not much energy left at the end of the day, so no wild parties (although I was invited to attend one last night). So, not much energy for blog updating. But, extra calories this morning and with nothing to do other than wait for supplies to arrive, I've got the mental energy to expend on a few words, today.

This week, looking forward to getting the staples out of my belly (I really think they could have come out last week…everything looks pretty well healed). Ooh, what a thing to look forward to. Staple removal. I really need to find some better things to anticipate.

Throat Blog — Busy Days

Well, the sleep issue resolved. I have had 2 great nights (well, other than night sweats, which must be being triggered by the chemo). Just in time for some relatively busy days.

I had hoped to go into work for a while on Tuesday, but still had not heard from my surgeon on my Medical release. So, I headed to the hospital campus a couple of hours before my 2:40pm radiation appointment. Made it to the reception area and was met with some chaos. Computer systems were still having odd issues. Someone had fallen and hit their head and they were working on getting an IV line into her (she was conscious, but could not get off the floor unassisted). And, about half the staff was at lunch.

So, I waited a bit, talked to reception who said they'd pass the request to the Surgeon's nurse and advised me to call if I had not heard anything.

So, over to radiation then the after-radiation meeting with my Radiation Doctor (every Tuesday after treatment). Checking out the low-res images the irradiating treatment machine provides, he noted that the overall outside measurements of the tumor were basically unchanged. But, he could see a lot of necrotic (dead) tumor in the middle of the tumor.

We agreed to set up a time this morning after my first radiation treatment (this is one of my catchup double-treatment days) to re-image the tumor using the high-res CT scanner. This is actually part of a clinical study checking the efficacy of the targeting and possible adjustments mid-treatment. No downside to the study.

So, today's schedule turned into:

  • 9:20 AM: First radiation therapy
  • 10:00 AM: CT re-imaging
  • 1:00 PM: Swallow study
  • 3:40 PM: Second radiation therapy

CT re-imaging only took 10 minutes, so from there I went back over to the Surgeon's offices, hoping for a calmer day over there. And it was. I was able to get the medical release to return to work, and even had time to drop it off at the office before heading back over for the swallow study.

Swallow study was basically me taking sips or small bites of barium-infused guck while they recorded the liquid/food going down by X-ray. Pretty much what I had said before the study is what they found: some minor amounts of liquid go a little ways down my trachea when I drink anything, but it doesn't go far, and I'm able to cough to clear it back into my esophagus. Food swallowing just takes extra effort (mainly due to dry mouth, but also due to some narrowing of my esophagus near my spine).

Really, eating is no pleasure. I can't eat much before I just…can't. Everything tastes pretty bad and many foods turn into mush in my mouth (so far chicken is the worst meat). I've been supplementing, some, with Boost Very High Calorie into my PEG. But, I need to also continue to chew/swallow every day to keep those muscles working correctly. I did eat about 1/2 of a 2-egg ham and cheese omelet this morning. I'll try a bit more "real" food in a bit. But, next sit-down with the Dietician I'm really going to have to ask for help getting more high-quality calories in.

Tomorrow, I am going to stop by and get some delayed service done on my car on the way to work, then plan to do what I can to catch up a bit on some of the projects that are running. I've kept up with emails, but haven't had time to study, much, and studying is really key to understanding how to render technical capabilities down to practical feature implementation. Radiation is at 3:10, so, I'll head that direction around 2:30 and from there, on to home.

Throat Blog — I Know I Slept More Than That

Every morning I sync my activity tracker (Polar M600) with the app while I’m in the shower, then check the results. This morning, I was advised by the app that I had 0h0min of night sleep. What! I know I must have slipped at least a little sleep in last night…although I did wake up restless and read for a bit…and changed between the couch and bed a few times (sometimes that helps me get back to sleep). Oh, and visited my new best friend several times.

Still, though, I know I slept a little.

But, got up very early and prepped for my busy Monday. Did a sugar splurge (not recommended by any of my Dieticians) and had a Belgian Waffle at IHOP. Was really just hoping that it tasted good. Well, it tasted … um …well I got it all down, anyway. Tried to drink a glass of Orange Juice, too, but only made it through about 1/4 of the glass. Just tasted bad (and hurt to swallow). I took it in a togo cup. I don’t know why. I knew I was just going to dump it out (and I did).

Made it to UTSW for my chemo. Actually glad I got there early. They had computer problems off and on the entire time I was there. When it was down, they could not print labels (and they do love their labels), could not get anything from the pharmacy (necessary for the chemo drugs) and could not access their messaging system.

Fortunately, at each important point (printing labels, pulling labs, getting my Cisplatin from the pharmacy) the system was up. Other patients were not so lucky and sat for quite a while in the infusion room not getting infused.

My only snag was that the RN was unable to hit a vein on first stick. So, she called over an associate who picked a different vein and hit it first try. That did eat up 15-20 minutes, though, so infusion started a little late. The first and last parts are just saline to get me hydrated and protect my kidneys. Middle part is the 1-hour Cisplatin infusion. All together, infusion started around 10:30 am and takes about 3 hours.

I had a visit from one of my Dieticians. Really not much to do this week, as the surgery really screwed with my weight progress metric. So, we are going to try to keep me at or above 153 lbs (my current weight). With no/bad taste, this is going to be very difficult, as I noted in my last post. For the rest of the infusion, mostly I read, but near the end I dozed. Woke up. Dozed again until the IV complete alarm sounded.

Still feel fine right after infusion (other than not-enough-nap grogginess). In my break between chem and radiation I found a nearby GNC and got some protein powder to help supplement my diet with extra protein when needed.

I was about 30 minutes early for radiation and really hoped that they’d be running fast, but no such luck. My 3:10 appointment started promptly at 3:10. They snapped me into place and started the treatment. For some reason, the preliminary (alignment) phase ran long…two songs instead of one. Then the standard one song radiation treatment itself. About 12 minutes total during which I actually dozed.

Had one small issue when I relaxed and the mask put some pressure on the tumor…which caused it to make my throat spasm (this has happened a few times, generally at night when I change positions). Was able to shift slightly and releave the spasm without interrupting the treatment and then promptly dozed again.

There is that “doze” word again. I’ve used it a few times, today. Made it home without dozing, though. Made it two steps into the living room and onto the couch, where I dozed again for a couple of hours. Dang, maybe my activity tracker was right about last night!

Hauled myself out the door and down to the restaurant for a cup of clam chowder (which actually tasted ok…not exactly right, but ok… it seems that my umami taste buds are least affected). Going to try some Chicken Limon w/o sides. Vegetables are really bad…potatoes taste like sawdust and green beans taste like sticks of wood.

Then, I’m going to go home, supplement myself up to try to get closer to my 2500 calorie/150 g protein goal for the day. And then I am going to do my best to doze all night. I have no early appointments. I still don’t have a medical release to return to work (I suspect that my message to the Dr went unread because of their technical issues, today), so don’t need to get up early for work. I might stop by work, anyway. I have some packages on my desk that I need to bring home. I might also bring home some product so that when I do get the medical release I’ll have some product at the house so that I can work from there if needed.

Probably (please, please be) a nice, boring day tomorrow. Then, back to doubled-up appointments on Wednesday and Thursday.

Throat Blog — Swallowing is Becoming a Chore

Well, I am starting to notice 3 side effects of the radiation this weekend:

  1. A little pain in the back of my throat when swallowing.
  2. Almost no sense of taste.
  3. Very dry mouth.

So, getting food down in the volume the oncologists want (2,500+ calories/day) is more of a job than a pleasure. I have been supplementing a little using my PEG (feeding tube) and have also made sure to stay hydrated that same way. They told me to put a few ounces of water though the tube a couple of times a day to keep it clear…I’ve actually been putting a full glass of water through it 3 times a day, since I really don’t feel like I’m drinking enough water by mouth.

This week is just chock full of appointments: chemo+radiation on Monday. Radiation Tuesday – Friday (twice on Wednesday). Swallow study on Wednesday.

As for the aftereffects of my abdominal surgery, my plan was to return to work on Tuesday (it would be short days due to all the appointments) but I’m still waiting to hear from my surgeon on that. My only lingering (but constant) complaint is the continuing need to be near a bathroom at all times…just in case. But, that is going to be true no matter where I am.

I would like to be taking some long walks through the neighborhood…physically I am up for it, and it would do me good. But, that would be like playing a particularly disturbing form of Russian Roulette. I have an exercise bike I’d planned on using in short doses…but I’m so sore from the constant trips to the bathroom I’m not really ready for that. I guess eating + little exercise will at least help to start rebuilding my weight.

Throat Blog — Home at Last

Well, actually I came home on Wednesday evening, but by the time I made it here, I was more than ready for a nap. Well, ended up being more than a nap…I slept from 6:30 pm until about 4 am. Felt good to be at home, in my own bed. The cat is either still mad at me for abandoning him for 2 weeks, or my smell is so different he’s not sure it is really me. I’m sure the more I feed him, the more that will change.

So, actually got out of bed at 4:30 AM on Thursday and started getting ready for a busy day. I had a 7:20 AM radiation treatment, a 12:30 pm appointment with my medical oncologist, then another 3:40 PM radiation treatment (I have a few double-radiation days on my schedule to make up for the days I missed last week). By the time I got out of the 7:20 AM treatment, I was more than ready for a morning nap. A friend of mine lives about 15 minutes from the hospital and had offered up her couch if I needed it. I took her up on the offer.

I actually have more energy in the afternoon, so was able to forego afternoon napping…I stopped by my office in between the Dr’s appointment and afternoon radiation. I had some nutritional supplements recommended by the Dietician shipped to the office, and needed to grab those. Also, wanted to see if they had sold off my office fixtures during my absence (everything seems to still be there). By the time I got home, though, really didn’t have the energy to drag the laptop in out of the car…so finally getting around to this update, now.

Starting to get a little dry mouth…I have to have something to wash down my food, otherwise the longer I chew it, the drier it gets. Also just noticing a little throat pain…not much, but just enough to notice when I swallow. And, swallow I must. The Doctors want me to take in >2500 calories/day including at least 150g of protein. I’ll have to use some supplements to achieve this, and will go shopping for protein powder this weekend so that, even if I miss the calorie goal I’ll at least hit the protein goal. But, I’ve also got some Boost Very High Calorie drink, so at the end of the day, if I’m a little short on calories, I’ll have that as a nightcap.

Monday I start back on my regular schedule of Monday chemo + radiation then Tuesday-Friday radiation only.  Meanwhile, still fighting the battle toward “regularity.” I took a Vicodin last night when I went to bed. Not so much for pain (I didn’t need it for that) but for the side effect of tightening up the bowels. It seems to have helped. I will be so glad when things get back to toilet normal. I walk around in a constant state of distrust of my own bodily functions. No real prognosis on when this could happen…what I went through was unique enough that there really doesn’t seem to be a good protocol for managing it other than frequent doses of Imodium and/or other similars.

Today’s plans are for my sister and Mom to come over and visit mid-morning. Then I’ll head over to my afternoon radiation. Might stop by the restaurant this evening for a steak…good source of protein that tastes good, too. We’ll see how much energy I have left at the end of the day. Either way, I’m pretty sure it will be an early evening.

Throat Blog — Discharge Day

Well, no, not one of those bad kinds of discharge. This is a good discharge. My attending physician has agreed that I’m ready to head on home. I am so ready. If I felt sick, I suppose it might be another matter, but I really don’t feel bad. And, Imodium has taken care of my mad dashes, so I should be able to make it all the way home without any issues.

So, a friend of mine is picking me up at 2pm to take me to my radiation appointment, then to my house. I think I’ll celebrate when I get home by taking a nap (if the cat will let me). Meanwhile, as soon as they remove my last IV, I’ll take the first really good shower I’ve had in a while (I’ve been having to keep that arm dry). I’ve already started packing my bags.

Tomorrow, I have an appointment with my Medical Oncologist to determine when we’ll restart chemo. There is a balance between allowing my abdominal issues to heal and not allowing the tumor to heal. I feel like I will probably be able to restart that next week. Not looking forward to it, in particular, but it is a necessary part of the chemoradiation treatment if we are going to destroy the tumor.

Ok, I think the nurse is coming in to remove my IV line. So…see you when I get home!

Throat Blog — Boring Update

Well, unless you find recounting of intestinal function and number of trips to the toilet exhilarating, you should find this pretty boring, as not much really has happened the last few days.

Sunday I had high hopes of being released on Monday. But, had to make >30 trips to the toilet (only really needed to go 15-20 times, but believe me when I say…don’t take any chances). So, on Monday, the Doctors were concerned that I might have a C-Diff infection (basically one of the normal gut bacteria takes over the gut and goes where it shouldn’t go). This concern basically put me on lockdown until lab results came back. Everyone coming into my room had to be extra-gowned. If I left the room, I had to be extra gowned and really stay away from any other patient…not that I’ve been socializing, any.

Well, labs came back clear in the afternoon, so all of those precautions went away. But, I had lunch, an ultrasound, and my ride over to radiation all happen at the same time. So, my ride over (and my lunch) waited while they did an ultrasound on my legs (I have some swelling and they wanted to be sure there weren’t any clots lurking…there aren’t). Back up to my room, I had them give me my sandwich for the ride over to radiation. Then, back to my room to finish my late lunch.

While at radiation, though, I met with a Dietician who said something that I had not heard before…and which I was pretty sure was incorrect. And it could really affect her decisions regarding what dietary adjustments and supplements I might need. She said that they had removed my Duodenum. Hmmm. I really don’t think so, but have been admittedly bombarded with information so maybe I missed something.

First rounds this morning (5 am) I asked the doctor to describe what was done and what condition each part of my intestine was in. I framed the condition as healthy (no damage), unviable (removed), and viable (kept, but might need some healing).

He confirmed that stomach, duodenum, and about the first 50 cm of jejunum were healthy. About the next 125 cm of jejunum was unviable and removed. Then, the remaining jejunum (about another 100 cm) was viable and looked healthy (but certainly some damage that needs to heal). Both the ileum and colon were very healthy looking, which the surgical team all found very surprising. They expected to see a lot of damage and possible unviable sections there.

So, I have that information to feed back to the Dietician, today.

Otherwise, Monday’s mad dashes were slightly better than Sunday’s. Maybe a few less “productive” trips, but no false alarms at all. But, still, 15 trips. They really don’t want to send me home if I am at high risk of dehydration and/or other issues related to that.

So, I’m  stuck in the hospital for another day.  Not much happens between mad dashes, so really not much else to report.

Throat Blog — Escape Plan Foiled

Well, after titling my previous post Escape Plan Plotted. I never actually explained the plot. Shame on me.

The plot is–continue to get better faster so that they’ll kick me out of here.

And, that plan was working. This morning I had definitive proof that my entire digestive system was flowing. And, when the Dr’s came by at 8:30, they allowed a liquid diet. I had several broths and juices.

Then, around 10, Jello got added to my allowed diet. So I had a couple of those. Dr’s came around again around 11 and saw that I was still doing OK.

So, I was taken off of all food restrictions. For lunch I had Chicken and Dumplings, then about 1/2 of a Rotini with Meat Sauce.

Escape plot definitely on track but…between the Chicken and Dumplings and the Rotini I had to make a fast bathroom break. Then again after the entree. Then again. Oh, then again. Jeez!

Had an oatmeal raisin cookie (and again) and some strawberry ice cream (again).

Then again, and again.

Ok, so a clean escape is only possible if I live about 5 minutes away. An escape attempt any farther away would be, well, not so clean. And I live about 45 minutes away. Would take careful route planning, many quick stops, lots of luck, and several changes of clothes.

So, escape plan is on hold. Meanwhile I’m going to order a Grilled Cheese Sandwich, Fruit and Yogurt Plate, and Seasonal Pie for dinner.

Tonight I’ll try to sleep (in between “and agains”) with two phrases rolling around in my head:

  1. This, too, shall pass.
  2. Never trust a fart.

Throat Blog — Escape Plan Plotted

Ok, I started this by calling it “Throat Blog,”, of course not anticipating these new developments. But rather than retagging all the posts as “Throat and Emergency Bowel Resection Blog” I’m going to keep the current tag. For anyone reading to know my progress (or perhaps your own expected progress) for the throat cancer treatments, you’ll just have to slog through some other stuff that is really very individual to me.

I don’t go back and read my posts, and exchange quite a few emails, FB posts, and just chats with doctors, family, and friends. So, some of my posts might repeat things. I’ll try to avoid that, but sometimes it is going to happen. So, I’ll do a quick recap on purpose so that maybe I’ll not repeat too much in detail.

Sunday night major pain, called 911, transported to MCA in Arlington, they moved me to UTSW. During all that time of trying to get me diagnosed so that they could get me fixed, I was experiencing continuous level 9-10 pain.

UTSW did emergency bowel resection on Monday, where they removed nearly 4 feet of small intestine. They also found the source of the problem was a blood clot in a weird place. Normally, the clot would be way down my small intestine nearer to the large intestine. This clot was closer to my stomach.

Surgery was just in time. Tuesday another surgery reconnected my intestines, and I’ve been recovering ever since. Wednesday spent in ICU, but I was able to get up, walk around unassisted. No pain med requests. Doctors were amazed.

Thursday moved to a private room and from then we were just waiting for my digestive system to start working, again (as would be evidenced by flatulence). Had Radiation treatment Thursday afternoon…lots of walking for that at my request. Two more radiation treatments on Friday as well as a visit with one of my office friends. He was also amazed that I was up on the couch. He’s a chaplin, so used to hospital visits. He expected me to be a drooling mess in the bed…instead I was sitting up in street clothes.

Then, while visiting with my BFF and his wife last night, it happened. Ok, there is no way to really say this delicately so I’ll just blurt it out: I FARTED!!! WOOT WOOT!!!! Fist bumps all around.

And, this morning I did a bit more. So, today I should  start to be able to take in clear fluids (broths). Maybe work my way up to Jello by dinner time. Really want an egg, bacon, gouda from Starbucks, but maybe tomorrow.

In a bit, the doctors are going to come through and remove the tefla tape from my incision and hopefully get the orders in quickly for broth. And, I should be able to take a real shower. No procedures scheduled today that I know of…just plan to walk around, drink all the water and broth they’ll let me. Maybe a nap or two, too. Probably got 5 hours of good sleep last night. They wanted samples of my precious bodily fluids several times…and had to wake up for meds a couple of other times.

Maybe another update later, but that pretty much covers it for now. Have a great weekend. I see the sun is coming up past a hazy Dallas skyline. Go do something fun and tell me all about it later.