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.

Throat Blog — No Drama, No Chicken

Well, the remarkable thing about today is that, so far, nothing is remarkable. No nausea (but I did take 2 meds first thing this morning to prevent that). I was able to go straight into lockdown on the radiation table with no issue and managed to do OK for the entire treatment. Did this even though I left my Musinex at home and my throat was a little moist…but never felt the feeling of drowning I’d had before when I needed to cough to clear but couldn’t.

First day definitely the worst. Expecting smooth sailing from here.

Oh, but I did get the nurse to take a few pictures of me locked into the machine so you’d have a better idea of what I was talking about. Enjoy! For me…back to work for the rest of the day.

Throat Blog — Nocturnal Hyperhidration

I sort-of woke up around 1 AM. Didn’t wake up enough to check the time (saved that for 3AM) but was awake enough to know that I was soaking, sopping wet. No fever. So, either a side effect of chemo, radiation, or the damage my thyroid glands have taken hold.

I thought to myself “Self. Surly there is a twisted cover of a Bob Seger by now called “Night Sweats.””. Googling found many videos of Nathanial Rateliffe and the Night Sweats. None of their songs seemed appropriate to the moment though. No Bob Seger covers.

But then I found a great song to link to called “Night Sweats” by Larry Carlton that all my guitar buddies will appreciate. A quick listen, then I’m going to try to get a bit more sleep.

Throat Blog — Oh, and a Nutritionist, Too

Oh, forgot to mention that a nutritionist also visited during the chemotherapy. And I should mention that, plus mention the nurses and techs that took care of me. They were all great. Got me professionally IV’d on the first attempt and made sure I had everything I needed to be comfortable for my few hours visit.

Nutritionist went over things to do as or if nausea or other digestive side effects occur. Also recommended a 2,000-2,500 calorie/day diet just to maintain weight and gave me some some diet tips (creamy soups, lots of protein, lots of water or sports drink). I’ll go ahead and start tracking my calories for a while (I use MyFitnessPal, which also links up with my activity/fitness/sleep/weight tracker at Polar) in addition to keeping up with my weight every morning. She said that they’d look at putting in a PEG (feeding tube directly into my stomach) if I lost more than 10-15 lbs. That would put me well below 160…so I’ll push to stay above that target. Or wear progressively heavier and heavier clothes to their weigh-ins. 🙂

I do have some high-calorie liquid supplements (Boost Very High Calorie) that will be easier to swallow as my throat gets sore. And, I’ll start splitting my eating up into more meals and graze on snacks, too. I have a nearly brand new food freeze-dryer I can use to make freeze-dried snacks (bananas, ice cream, other fruits, vegetables, whatever) that I can snack on…and that are easier to lug into treatment than bananas, ice cream, and fruit would be if not freeze-dried. I can also blend some of that with the Boost to make something that has more flavor variety. So, thinking about lots of ways to pass the weighs.

Anyway, thanks again to my chemo and radiation teams. I know it has only been one day, and 34 more treatment days ahead of me (for the radiation…only 5 more for chemo). But, it was the most important day, and I made it through with just a stutter (that was all me, not them).

 

Throat Blog — First Treatment Day

Well, today was mostly a non-event for me (hopefully a kick in the tumor’s butt…wait, I’m not even sure, now, if tumors have butts). A little blood test to make sure my kidneys were working well, then they plugged me into an IV for nearly 3 hours. First about 32 oz of Saline. A couple of shots of anti-nausea meds. Finally, a 32 more oz of Saline at a slower rate while they put in the cisplatin. The only real effect I could feel was the need to get rid of some of that fluid (3 times). I just dragged the IV tree into the bathroom with me, then plugged it back into the wall when I got back to my chair.

I could taste when the saline started. Then could again taste when the cisplatin started (more metallic taste). I just sat in the chair and munched on beef jerky, cookies, and gummy bears while watching Game of Thrones Season 4 Final Episode.

After everything finished and they unhooked me, I did feel just a little shaky, but not nauseous. That could have been caused by Game of Thrones, though.

Went straight to the food court and had 1/4 chicken with sweet potatoes, mixed veggies, and a chocolate chip cookie. I figured I might as well eat, since I felt fine(ish).

Next stop, radiation. Appointment was for 3 PM, but I had nothing to do but wait, so checked in early, then took a Musinex to keep down the need to cough. They took me back to the treatment area around 2:20pm. Checked out the machine and went over what the procedure would be. I should have asked for a few more details. They basically said 20 minutes, then it would be done.

They locked me in place, and I immediately had to ask for them to unlock me. Just a little bit panicky…it was tight enough that my breathing felt constricted and I needed a few more minutes to psych myself up. So I asked them to give me a few more details about when I would know the machine was irradiating, when it was safe to wiggle a bit, etc. The only medical intervention they had for the anxiety was ativan–basically a Valium. But, you cannot take that and then drive. So, I took a few deep breaths, coughed once, and had them lock me down again.

After I got locked down the second time, I realized that I had tensed up so much, that I was much tighter in the mask than necessary. I willed my chest and shoulders to relax, and that helped a lot. I didn’t feel like my breathing was restricted. I could take a nice, deep breath. The only major discomfort was dry mouth (from the panic and probably from the chemo and Musinex, as well). I might hit myself with some mouth moisturizer tomorrow just before they lock me down.

First, an X-Ray. Then, they said would come in and adjust the targeting marks on my mask. That would take about 5 minutes. Except, apparently the marks were fine as is, and they did not re-adjust the targeting marks. So this phase just took 2 minutes or so, followed by another 3 or 4 minutes of waiting.

Next, the actual radiation therapy. The “gun” rotates around my neck while irradiating. Takes a little over a minute to do this, then it rests for a few seconds (you can hear the noise level change). It does this 4 times for my treatment (other patients might get more or fewer). I took advantage during each brief rest to swallow, cough if I needed to, or just slightly wiggle. Then, after the 4th pass of the radiation beam, they unlocked me and it was over.

Having a 1- or 2-minute horizon instead of a 20-minute horizon to think about really helped my mental state. It is much easier to count to 120 than to count to 1200. Plus, I believe the actual procedure was completed in just a little over 10 minutes, not 20. So, end the end I got through it without needing a diaper change. I would have consider a Stadium Pal, though, if it had gotten worse instead of better.

So, after all that I stopped by the office (a couple of packages to pick up, a little work to do). Checked in with my bosses. Reminded them to keep sending me tasks…use me while I feel good, because I might not be this perky in a month. Now, headed to get some Clam Chowder and then home.

I don’t really feel any different at the moment. But, I didn’t really expect to feel any different, yet. Hopefully, tomorrow’s post won’t be “Throat Blog — The Return of the Chicken.” (Speaking of either lunch or my radiation therapy lock-down anxiety…).

Throat Blog — Feeling Down in the Mouth

Well, several other people were feeling down in my mouth, today. First stop of the morning was a Dental Oncologist in Garland (about a 1 1/2 hour drive in this morning’s rainy rush hour traffic). Basically had to sign off on my teeth being healthy enough for me to start radiation therapy. Also, needed to have a tray made for a fluoride treatment to provide extra fluoridation to help counter any negative affects the radiation could have on my teeth. So, about 20 X-rays and a consult ensued, followed by a tooth casting so that the fluoride trays could be made.

The radiation oncologist didn’t really feel that I would have to worry too much about my teeth, as the treatment will be much lower on my throat than some other cancer patients. But, I am all for an abundance of caution.

The dentist gave me a thumbs up (after having various people in the practice having put their thumbs…and several fingers…in) but recommended I move up my November cleaning appointment to be as soon as possible. The office staff was great (oh, they are www.dentaloncology.com). They even helped out getting me an appointment for dental prophylaxis (look it up) with my regular dentist for this afternoon.

So, I left Garland with a bag of goodies (2 toothbrushes, industrial strength fluoride gel, mouth moisturizing samples) and headed the 46 miles west back to my regular dentist. Got there early enough to grab lunch and do some email (some semblance of work, today, anyway).

Office staff at my regular dentist — and by regular I mean every 6 months since 1988 — got me squeezed into the afternoon schedule. Oh, and that isn’t a typo; I’ve really been seeing the same dentist (and hygienist) for nearly 30 years. When I first started going there (after my previous dentist was arrested…but that is an entirely different tale involving women, nitrous oxide, and after-hours “dates” in the office) I had hair, my dentist didn’t have grey hair, and the hygienist was single. Fast forward, I’ve been going there through my own alopecia, the dentist’s development of canities, and the hygienists birth of a daughter who is now grown and long ago released to the wild.

The entire office staff was great (if you are in Fort Worth and need a dentist: www.johnrubindds.com. Got teeth cleaned, a complete review of every tooth’s  history and condition, then another bag of goodies (toothbrush, toothpaste, floss, some more mouth moisturizer). Oh, and Dr. Rubin: I was just joking. This wasn’t actually caused by floss poisoning.

Throat Blog — On the Schedule

Ok, just got my treatment schedule. I misunderstood the chemo part…it is more often than I thought.

Starting 10/2, Chemo every Monday for 6 weeks (with labs it will take 4-5 hours); Radiation every week day for 7 weeks (30-45 minutes per session).

I could list the possible side affects of the chemo, but just doing so would actually trigger some of those side affects. In any event, the side affects I actually get are the only ones that will matter, and no one knows what those are until they actually happen. They’ll be what they’ll be and I’ve got plenty of drugs to ease whatever they are. And, whatever they are can’t be worse than what this is going to cure.

So, I’ll try to aim for more cheese and less whine.

Throat Blog — Bulking Up

So, no real news, today. I have some fake news, but saving that for Facebook posts under my Russian alias.

I have been taking the Dr’s direction to eat well while I can to heart.  I had been losing weight slowly, mainly due to anxiety…I get hungry but then quickly lose all appetite a few bites in. Having Tuesday’s procedure changed from tracheotomy to biopsy has done wonders for the anxiety. That and having a plan of action. Ultimate outcome is still just as uncertain as it has ever been, but knowing the next steps helps to keep my mind on the nearer horizons and not worry as much about what is on the other side of the mountain.

So, I have been eating. Breakfast (which I almost never eat), Lunch, and Dinner. Last night in addition to my main entree I had soup and dessert. Doctors said weight gain trumps pancreas for now (but not to go crazy with the sugar…just not to worry about it too much for now). As the below chart shows, it is having some effect.

Difficult to tell without scale, but the far left of the graph is late June. The last green down arrow is last Wednesday and marks my weight’s low point (162.3 lbs). Today that is up to 165.8 (before breakfast of oatmeal and a Pumpkin Spice Latte).

My throat soreness from the biopsy has almost entirely abated. But, that never really affected my eating…mainly it hurts only when I cough or “dry swallow” (i.e. swallow only saliva w/no other food or liquid volume).

So, that is the no-update update for Saturday. I don’t really expect much to report until I go to the dental oncologist and speech therapist (for swallow coaching) later in the week. Ready for a relaxing weekend.