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.

Throat Blog — Yucky Stuff from Hell

Wow. Where do I even start. Read that last post. I watched the game. I had a nice dinner (sirloin salad). Bought groceries for the week and took them home…got them put up. Got ready for bed. Ok, from here a lot of things are fuzzy.

I started feeling some bowel pressure that rapidly advanced to extreme pain. I was sweatty. I tried the bathroom, but no help. Managed to pull on my undershorts and go to the car to get my “breakthrough nausea med” thinking that I’d just made a mistake by stopping the normal nausea med on Friday. But, I couldn’t even swallowing the pill. Curled up on the bed, chewed it as best I could.

Somehow I made it to the couch where I’d left my phone. I called 911. Yes, me, a guy living alone and independent actually called for help. I could barely say anything more than “severe abdominal pain…hurry…just come get me.” I’m sure I sounded pitiful. Well, I probably was pitiful.

EMTs got me loaded. I had them bring my red bag (had my phone, wallet, current meds) and take me to MCA. I could only lay on my stomach and beg for pain relief. I’m sure I wasn’t making much sense. In the ER at MCA I remember people asking the same questions over and over. No diarrhea. No nausea. Then I projectile emptied my stomach…I think it was either the morphene or my bodies attempt to just get everything out right now. I felt no better. They didn’t, either.

I remember getting a CT then back to a ER room. I heard someone say that my intestines looked strange. Mention of ciliac compression I think. But at some point they decided I should come over to UTSW where my cancer treatment and docs are. They sent me by ambulance. I really only remember pain.

At UTSW a lot of back and forth with the same questions. Finally someone said surgery. I remember saying “Hurry.” I think I went into surgery Monday afternoon. The surgeon said if they had waited another hour I would not have come out. As it is, they removed nearly 4 feet of necrotic intestines and a 1″ blood clot. They left my intestines apart after the surgery and moved me to ICU.

Once I came out of anesthesia, I was immediately conscious, alert, and oriented. The surgeons were actually amazed when they came by and I was sitting up, talking, and making full sense. They’d never seen me like that.

Tuesday is a bit of a narcotic blur. They had me on Dilaudid and gave me a button. Which I pushed at every opportunity. My nephew and niece came up and stayed. And another nephew. We arranged for getting my personal stuff and cat taken care of…I remember that much. But, Tuesday they wheeled me back to surgery to see what they could recover of my digestive tract. Surgeon was somewhat grim…I might not recover. I still might not recover, but my prognosis gets better every minute.

I couldn’t really sleep Tuesday night, so had either the radio or TV on all night. Had a lot of trouble keeping my airway clear. I had a catheter (which wasn’t a problem) but also a NG tube (nose to stomach) that blocked my esphagous. And, my trachea is still irritated by intubation as well as by the tumor. It wasn’t really a miserable night. I had Dilaudid to keep me company and we had a fine time, all things considered.

But, around 5 am Wednesday I stopped pushing the pain meds button. They were still pushing some on their own, but I wasn’t asking for extra. Around 7 my Tech said he’d be back to help me clean up and to get me into a chair. So, I did 2 prophylactic pain med pushes while I waited…knowing that moving that much would probably peak out my pain. But, the moving around wasn’t that bad. I made it into the chair and put the button away for good.

During Wednesday I did a couple of tours of the ICU area, walking behind a wheel chair. Then, they brought a wheelchair to take me down to my regular room…I asked if they’d let me walk, and they did.  They would not, however, allow me to take the stairs.

My core is sore. I’m not able to use my abs for anything, but I have decent arm and leg strength that I am able to compensate with. One of my friends came up…I felt bad for her because I was so “wet” I couldn’t really talk without choking. I’m sure it was disturbing for her…It really bothered me, too.

That wetness was my main issue for Wednesday night. I still had the NG tube in (everything else except IVs had been pulled). So even when I could cough something past my trachea, I couldn’t get it far enough out to clear. They started giving me something to dry out my throat and that helped immensely. Other than being woken up to be poked and prodded all night, and other than the very disturbing dreams, slept as well as can be expected.

So, this morning they pulled the NG tube (oooouuuch!). But, once that was out, I felt hugely better. Kept trying to get them to get me up, but then another specialist would come by. I’ve had respiratory, cardiac, vascular, plus two rounds of the surgeons coming through early.

I’m up on the couch, now. Sipping a little apple juice (ummm sooo goood…my mouth had tasted like old socks all morning). Not going jogging, but do want to do some walking around. Oh, and get cleaned up a bit. I feel kind of gummy. Oh, and here comes the surgery team again for a quick check (no update…I think they are still making sure I’m really doing as well as I seem…).

Everyone tells me to just not worry about Sunday/Monday. That what is important is today…and I guess I can see their point. But, man. I would never want to go through that ever again. I can absolutely say that I’ll do anything anyone tells me to do to keep that kind of pain away forever.

So, radiation in a few hours. I’m looking forward to the walk. Then, next steps as they are set out. I’ll try to keep you informed.

Throat Blog — Treatment Week 1 Recap

Ok, I’ve given bits and pieces of daily stuff along the way, but have really skipped past most of the yucky stuff. Well, mainly that might be because, so far, no very bad yucky stuff to report. But, in case you just have to know…or if you are reading this blog to find out what you might expect if you have to go through this yourself, here is the yucky stuff recap for week 1.

Night sweats I’ve previously mentioned. Very bad the night after chemoradiation started (Monday night), then moderate but irritating the rest of the week. I tend to wake up sweaty and cold…cover back up, then wake up a while later sweaty and hot. No fever, just sweats.

Kidneys kicked into high gear Wednesday night…been getting up every 2-3 hours during the night. I can pretty much take care of that without really waking up too much and I go right back to sleep…if I’m not also sweaty/clammy.

Nausea: None. The anti-nausea meds are working (or, chemotoxicity has just not gotten high enough to cause a problem, yet).

But, one side effect of the anti-nausea meds is constipation, and that is my #2 (no pun intended) irritant besides the night sweats. They want me to use Miralax, which I’ve been doing to either no effect or so little as to be meaningless. So, Friday night I resorted to a Dulcolax, which they don’t want me to take regularly (again, no pun intended). Dulcolax worked, though. I’ll talk to the Dr this week about officially allowing occasional Dulcolax along with the Miralax. Also, since I’ve experienced no nausea, will see what he thinks about reducing the anti-nausea med from 8mg to 4 mg until/unless more is needed.

On to fatigue: Really none that can’t be explained by my interrupted sleep patterns. I am going to bed a little earlier and getting up a little later (but still find it hard to stay in bed past 8, even on a nice weekend morning when I have no other pressing obligations.

Pain: No change (i.e. no real pain from either treatment or from the tumor).

Swelling: Area around the tumor has swelled a bit both externally and internally. Not interfering with breathing, but I am being more careful when I drink liquids, as it is easier to accidentally get drink down my windpipe. Fortunately (well, for me, not for her), my Mom was recently in need of swallow therapy, and I’ve taken what I’ve learned of her safe swallow protocol. Basically, don’t try to toss liquid to the back of my throat first thing. 1) Take some drink into the front of my mouth; 2) Tilt my chin down; 3) Swallow. When I consistently do that, everything goes down the right pipe.

Ok, enough of the yucky stuff. It is a nice, sunny Sunday morning and I’m spending it at Starbucks. Then on to lunch with Mom and nephew…and then Go Cowboys!

Throat Blog — Organizing for Consults

I had an unexpected consult, yesterday (Dietician consult and I didn’t see the appointment until about 40 minutes before it was due). It was added at the last minute…and fortunately I made it in time. Also, fortunately, the radiation therapy team was able to move my afternoon treatment up to morning, so no need to make two trips.

In one of my previous lives, I was a certified meeting facilitator. I spent a lot of time making sure that every meeting had an agenda and that the agenda didn’t get side-tracked during the meeting by tangential issues (which I would try to move out to a smaller, future meeting as appropriate). Now, I’m finding that some of these dormant skills might help me organize my doctor and specialist consults throughout treatment.

So (and as long as whomever I’m in the consult with is in sync with this), I’m going to try to have prepared before each sit-down a quick sheet broken into 3 parts:

  1. Primary Cancer Issues: List of any critical issues or changes directly related to the tumor-reduction therapy as appropriate to whomever I’m meeting with. Airway constriction? Pain? Any notes on the treatment itself.
  2. Secondary (side effect) issues: Monitoring and mitigation of side effects of treatment: Pain, swallowing, breathing, nausea, sweats (or chills), other digestive issues, fatigue, weight gain/loss, etc.
  3. Baseline health issues: I see my baseline health as the platform that supports all treatment, recovery, and restoration. Things like pre-diabetes management (currently on hold), appropriate (and inappropriate) supplements to diet, blood pressure management, heart health, fitness, etc. Basically those things I was tending to before this diagnosis and treatment started.

So, some things to do an advance of 3 consults next week.

Meanwhile, I feel fine. A little sleepy in the afternoon from poor sleep (my kidneys finally kicked back in after the chemo, so I was up 4 or 5 times last night). One unexpected secondary side effect of the chemo on Monday: Sudden 5 lbs weight gain. I’ll discuss it more next week during consults, but I suspect it was a combination of the chemo and other meds slowing down the food moving through my gut, the sudden increase from about a 1500 calorie/day to a 2500 calorie/day diet on Monday (nutritionist’s recommendation) increasing the overall mass of stuff in my digestive tract, and some water retention from 4+lbs of fluids added during chemo (that appears to be working its way out, now).

Below weight chart shows my trend along with some key events. Stress during diagnosis and then impending major surgery took about 5.5 lbs off over 6 weeks. Relief from still having a larynx after the operation was changed to a biopsy helped with that, and I gained back a few lbs. Then this week’s big treatment-induced jump.

So, not expecting to have too much to say until next week. Thank you all for your well wishes.