Throat Blog — The Future is Uncertain

Well, not much clarity from today's meeting with the doctor. He is still very encouraged by my progress, but we really won't know if the tumor is completely gone until my PET scan…about 2 months from now. However, he is seeing recalcification in the area of the thyroid cartilage which sounds good.

Overall, he feels strongly that chemoradiation was the right thing to do (the alternative was immediate radical neck dissection with complete tracheotomy).

He really wants me to try to eat ASAP. So, I'll start trying a few small things and see how it goes. I don't see how I can get much down…still gagging if I cough and even getting pills down takes some time. The Sudafed has really helped clear up the mucus (but radiation treatment seems to increase the mucus even with the Sudafed in my system, so not as effective as it was on Sunday). It also hurts when I swallow. Not excruciating, but maybe level 4 pain on a 1-10. Well, I'll just have to see what I can do.

In my early 20's I took a road trip with some friends to Padre Island. We camped all week on the beach. Amazingly, I did not sunburn at the beach. I was pretty good about keeping sunscreen on. However, driving back the weather was great, the sun was out…and I spent hours driving with my elbow propped out the window. And that is what burned…my left arm got thoroughly toasted. One of the worst sunburns I've ever had…until now. Over the weekend a lot of dead skin peeled off my neck where the radiation has been being applied. Now, my neck is bright red, raw, itching, and painful. In three days, I'll be able to put some better healing ointments on my neck, but for now I'm stuck with using basically petroleum jelly mixed with lanolin. It does lube up my neck and ease some of the symptoms, but also leaves me greasy, sticky, icky, yucky. Another reason to be glad only 3 sessions left.

Throat Blog — Gag Me With a Spoon

Actually, this weekend it doesn't even take a spoon. I've had a pretty continuous cough (throat irritation generating a lot of phlegm). Several times this weekend my cough has triggered gagging. I've managed to not totally lose it, but when it happens it takes several tense minutes to settle things down. This is not nausea at all. Really looking forward to seeing this phase go away.

Other than that, I'm not noting any other substantive changes. The tumor does seem to be smaller, but with other swelling that is really difficult for me to judge. I'll get a better read on this on Tuesday when I meet with my Radiation Oncologist. We are still hopeful that this week will finish off the tumor.

This will be my last treatment week. Chemo on Monday, then radiation Monday – Friday, then done. Well, my medical team says that I'll have about another 2 weeks of downslope after the last radiation before I start to really feel better. That said, other than the gagging, I don't really feel bad. I don't have a whole lot of energy, but I don't feel particularly weak.

Assuming the tumor is gone, the next thing on the worry list will be what can be done about the structure of my trachea. From what I can tell (and, again, I'll get a better read on this on Tuesday), there has really been no regrowth of the thyroid cartilage. That is a major tracheal structure, and I'm not finding much on Google in regards to surgical restoration. Hopefully I'm just not finding something that exists. Without restoration I'm afraid the only option will be tracheotomy, which I really want to avoid.

I've been able to make it into the office most days (well, except for Mondays which are totally taken up with treatment). I'm certainly not at my most productive, but it feels better to go in and do something…even if I could do most of those same things from the comfort of my living room. Plus, my treatments are about 15-20 minutes from the office, so it is really more convenient to leave from there instead of from my house, which can be 45 minutes to an hour away from treatment.

I am ready for the treatment break for so many reasons, not the least of which is the anticipation of taste, swallowing, eating coming back. I really, really miss food. My transition to eating goal is December 10…and I want to be eating most of my food by Christmas. I'll be sure to take some foodie shots as I move in that direction.

Throat Blog — Shrinkage

Good news from the Radiation Oncologist, today. Last Friday he noted a significant shrinkage in the tumor. I had also noticed that the tumor seemed smaller from the outside, and several others noted the same.

As of today I'll have 8 more radiation treatments and one more chemo, then we'll see what is left of the tumor. He's very optimistic that these last two weeks will be a very good two weeks as far as tumor eradication goes. It is unfortunate that I missed two weeks of chemo due to the intestine issue, as the chemo is really important for priming the tumor to die from the radiation.

I still can't swallow food very well…hits my gag button (and, of course, still tastes like crap). Oncologist believes that my sense of taste will come back quickly, as most of the radiation has been targeted well below my mouth. Much of the taste issue is likely also from the chemo…and after next Monday no more chemo so perhaps a few weeks for that to clear up. Hopefully with the tumor shrinking the gag button issue will ease up and I'll start to be able to eat normally, again.

Meanwhile, on the nutrition front…my weight is up, which is good. However, I found out today that my insurance does not cover my tube feeding at all. So, I need to call the supplier and negotiate to an uninsured rate. My first two weeks were billed to insurance at $2,300. Compare that to what I would have paid through other sources ($550-750) and it is still expensive, but manageable. Unfortunately I did not find out I wasn't covered until I'd ordered another 1 month supply. All of those boxes are sitting in my living room, unopened. If I can't get a reasonable cost, I'll drop it all off at their Irving office and seek other sources.

Today I'll meet with my Medical Oncologist (manages the chemo). Since my surgeon has released me, the Medical Oncologist will now manage my blood thinner prescription. I'm hopeful that I'll only need to stay on that for another month or two, but we'll see what he says.

And, finally, the sewer line issue is fixed, and didn't break the bank (just dented it a bit). I'm back home from my mini-vacation at my sister's house. Everything flushes and drains as it should. And, since that had to have been #3 on the bad things come in groups of 3 chart, just looking forward to better things from here on out.

Throat Blog — Wherein “Sewer Line” is not a Euphemism

I've been told often enough that bad things happen in threes that I've been holding by breath waiting for the third biggie to hit (all these small nuisances don't count after 1) Cancer and 2) Blood Clot in Intestine). Well, yesterday morning I went to flush toilet #1 and it mostly didn't…but did stop filling the bowl just short of disaster. I assumed this was just a problem with toilet #1.

So, later in the day, flushed toilet #2. Same result. Uh-oh. This is not a toilet problem.

Went out front and checked the sewer down pipe (I don't know what it is actually called, but it is a capped PVC that goes down to the sewer outflow pipe). The cap had popped off…and it was full to the top, which should never be the case. It means that there is a blockage between the house and the street.

So, called Rescue Rooter who came out in the afternoon and spent a couple of hours trying to clear the line, to no avail. The line is collapsed about 2 feet from the curb. The only way to fix is to dig down to the line and look at it. Which can't start until Tuesday.

Fun fact: A house is not considered habitable without sewer service. Well, I pretty much had come to that conclusion myself. Packed a bag, called my sister, and am now camping out in her spare bedroom. Estimate is a few thousand $ for the dig…but it could go much higher if the entire line is compromised. Just won't know until they dig down and look.

Spending money is no fun (well, unless you are spending it on something fun). But, this isn't really a do-it-yourselfer project (not that I do much do-it-yourselfer stuff). So, biting the bullet, tightening the budget, and hoping for the best.

Throat Blog — A Night at the ER

Ok, gotta spoil the lead. No major issue. But, I've been dealing with the watery side effects of the antibiotic I'm on since shortly after I started on it. It was annoying, but not frequent and no cramping. Until last night. Around 7pm I started having to step down the hall every hour. Still not too worried, though. Until about 9:45 when bad cramping started.

One of the common causes for this kind of symptom is a bad gut bacteria called "C. Diff.". It is normal for some of that to be in your gut, but sometimes it can basically take over. When it does, it can cause some pretty bad things. So, lets look at the typical warning signs:

  • Recently discharged from the hospital — check.
  • Recent start on a broad-spectrum antibiotic — check.
  • Watery diarrhea three or more times a day for two or more days — check.
  • Mild abdominal cramping and tenderness — check.
  • Fever — check.

So, at 9:45 last night I packed up a few things and headed to the UTSW Clements ER so that they could check things out.

Arrived about 10:30p and hung out with all the other sick people until about 12:45, at which time they got me into a exam room. In which I mostly slept. Well, there were samples taken, blood drawn, and a 1000ml bag of fluids added. But, mostly I just dozed and awaited test results.

Test results came in around 6:30 am. Negative for c. diff. So I was cut loose and told to just keep taking the antibiotic until they were out (which will be Sunday morning) and then take probiotics to try to get things running right (or, well, not running) again.

Back to the house, I took a little 8am – noon nap. Then got some calories in, cleaned up, went back for radiation and then came right back home where I was really tempted to just fall into a coma. But, I resisted (mostly). Managed to get in my calorie quota for the day while sitting on the couch (been doing way to much couch sitting) watching TV.

Tonight, a little sore abdomen, but no cramping. Looking forward to catching up on rest this weekend and hopefully my throat (which has been improving) will also lose a little tenderness. Might finally try that oatmeal I've been promising to eat this week.

Throat Blog — A Couple of Changes

Well, what would a week be without something else changing. Some for the better, some not so much. So, I guess this should be pretty neutral.

Last week, they did a re-image scan of the tumor and adjusted my radiation treatments this week based on that scan. This is a "for the better" part…previously the irradiating machine would make 4 passes of about 1 minute each. This week, the protocol changed to only 3 passes. Active portions of the tumor have reduced enough to warrant the reduced dosing. That scan also allowed for revised/better targeting. So, all in all, that is good.

But (ok, there had to be a but). On Mondays when I go in for chemo, the first thing they do is run labs. Well, this week my white blood cell count was high. not enough to skip chemo, but enough that they had some concerns. I had no symptoms, though. No other indication of infection, no fever, etc.

Monday was a very busy day…I had to get up before 6AM to make my first appointment and didn't get home until nearly 7PM. So, I was beat. So beat that it didn't really register that I went to bed shivering a little. When I woke up at 2:30 AM, I felt hot/sweaty, but not the night sweats I'm used to. So, I checked my temperature. 102.1F. Yikes. I took a couple of Tylenol and slept until around 5:30 AM. Rechecked and fever was down to 99.7F. Still too high. So, instead of heading into work, I went up to the Dr's clinic to see what I should do.

Despite all the medical drama the last few months, I'm still a newb at being sick. So, was quite surprised when they said what I should have done was go to the emergency room. Well, guess I'll know for next time. This time, though, they put me on a strong broad-spectrum antibiotic and sent me on my way. I have noticed a bit more of a cough has developed, but it is not getting worse. The antibiotic should knock whatever bug has slipped in out.

Now, though, one of the side effects of strong, broad-spectrum antibiotics is…diarrhea. Which I had just about kicked. And which is now back. Not the 15-times a day kind I was having in the hospital. But, annoying enough. So, back on Imodium to try to get that moderated. I'm just on the antibiotic for 5 days, so hopefully after that clears my system things will start going back to normal, again.

Other than that, though, I'm in several ways feeling better. I had been at a point where I could not really lay down on my back…pressure in my throat would cause me to cough/gag. That pressure is relenting. I pretty much slept flat on my back all night last night w/o any issues. Flat on my back is good, as it allows my throat to lubricate a bit better while I'm asleep. My throat was still pretty raw this morning, but this morning was much better than the last few days.

With the easing of the pressure on my gag button, I'm hopeful that I will be able to start taking in some more food by mouth. I've not choked, exactly, on food. Everything pretty much goes down the right pipe. But, if I swallow any volume, it has been gagging me a bit. Never totally lost it, but came close. And I do not want that to happen. So, I've been very careful this week, and 98% of my nutrition has been through the feeding tube. Tomorrow, though, I might try some oatmeal in the morning. I know it still won't taste good, but it will at least keep those swallow muscles in practice for when things do start to taste good, again.

And, my Radiation Oncologist assured me yesterday that my sense of taste would come back. I think he was referring to eating and not to the aloha wear. In any case, he seems pretty upbeat about my progress.

Tomorrow afternoon, staples should come out. This will be my first post-op appointment with the surgeon, so more could come of the visit than just that…but if it is just that, that will be enough. They don't really hurt, exactly. But, they do catch on my clothes (especially the ones that go below my belt line) and zing me every now and then.

And now, it is nearly time to head to my afternoon neck tanning session. I've been putting this entry together for a couple of days, but didn't have the energy to get it Publish-ready. So, one last read-over, then I'll hit Publish and be outta here for the afternoon.

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.