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.

Throat Blog — Cast in Carbonite

Well, at least it felt like carbonite. Was actually a low-temperature thermoplastic. Here is a picture of some random woman in one:

I went to the radiology center at UTSW early this morning to be fitted with my head cage. Actually, it is what will hold me very still during the radiation treatments. They laid me out on the CT scan table, then put the warmed mask over my head and upper torso. As it cooled, the material hardened, shaping itself to me.

Then the fun started. Since the biopsy I’ve been having to clear my throat a lot. I had not really cleared it well before they laid me down…and I didn’t realize that I was about to be locked into place. A bit of panic, as I could not clear my throat and started to feel like I was going to drown. So, they unsnapped me and let me sit up and clear. They assured me that I am not the first person to have that reaction.

So, I cleared my throat and took another stab at it. I needed to be locked down about 5 minutes to get the CT scan done. Two things helped the 2nd time:

  1. I had cleared my throat so didn’t get the drowning feeling.
  2. The mask had cooled and I had expanded a bit so I had room to move my throat enough to at least swallow, if not cough.

Made it through the procedure fine after that. I was worried that I’d have to valium up (and then I would not be able to drive myself back from the appointments). So, past that hurdle. I think they took about 30cc of blood for testing.

And, now I have an appointment set up with an oncological dentist in Garland (only 2 hours from my house) for next week. I get extra fluoride during the radiation treatment. Any conspiracy nuts out there beware: Because of the extra fluoride I will, of course, be extra trackable by government black-ops teams.

Treatment starts on 10/2. I have a couple of other appointments between now and then (chemo, speech therapist to discuss swallowing, aforementioned dentist, etc.). And, I need to eat everything I can, and continue to do so even once the throat starts hurting. Actually, my throat is pretty sore, today, from the biopsy, but that should go away in the next few days. They said that the sore throat from radiation would be much worse…probably my worse symptom. If they see me losing weight, or if it starts to seriously affect my ability to swallow food and liquids without choking they’ll put in a feeding port. So, an incentive to not lose weight. Gotta stock up on Ensure and make sure my blender is in good working order.

Ok, that is it for today. I’m going to stop by the office then head home. I think I’ll probably start back to work tomorrow, only leaving for my various appointments. What a change since Tuesday morning when I faced weeks in the hospital and months recuperating. I might still face that, but I’m fine with just putting that out of my head for now.

Throat Blog — A Tale of Three Doctors

Ok, to start, a short story. Before I tell it, though, I must say that I wrote the story before I met 2 of the 3 doctors I saw today. Any resemblence to any doctor, living or dead, is purely coincidental (and, in my case, actually there is little resemblence…but don’t let that detract from the story itself).

A Medical Oncologist (i.e. chemo doc), a Radiation Oncologist, and a Surgical Oncologist all go in together on the purchase of a fixer-upper. They all three go to check it out and decide on the best course of, well, fixing it up.

The Medical Oncologist looks around a bit and says, you know, if we just strip the floors, put in some aromatherapy, and set off a bug bomb or two this place will be just fine.

The Radiation Oncologist looks around and says, you know, all this place needs is better lighting. Lets just put up some strategically placed high-intensity spotlights.

The Surgical Oncologist looks around and says, well, I think we are just going to have to take everything out of here. And, while we are at it, we should move the front door closer to the bathrooms.

Ok, now for my real tale which really didn’t go as the above might suggest.
First off, still elated that I kept my larynx, yesterday. I’m a little sore swallowing, but that is rapidly getting better. Took a vicodin to sleep last night, but Tylenol was fine for today. As to the doctor visits:

The Medical Oncologist was first. He went over all the options from his perspective, including his thought that ultimately the major surgical option might be the best way to go, but that he was open to starting with a more conservative therapy. We spent the rest of the time discussing the roadmap in the event we went more conservative. Basically a chemo cocktail every 2-3 weeks while simultaneously getting radiation therapy every week day. He didn’t expect that nausea would be any issue for this kind of chemo, but that the radiation might start making me feel bad after the first month or so.

Next up was my Surgical Oncologist who did the biopsy yesterday. He also said that long term, a complete laryngectomy was more than likely, but that he would completely understand and support starting with chemo-radiation while still watching to make sure that there were no issues that would take that option away.

The Radiation Oncologist actually spent more time talking about the risks of not having the surgery in general in terms of long-term prognosis. However, the increased risk, in the aggregate of patients, is not huge (like in the 5%-ish range). I have one bad thing feeding this: the tumor is large. However, balanced against that is that my general health is excellent, I have no breathing issues, I have no issues swallowing, I’m not obese, diabetic, or a present or past smoker. All of those would make chemo-radiation virtually a non-starter.

They all asked what my outcome desires were. I gave them all a hierarchy of outcomes. Overarching all: life. Beyond that, in order of best-to-worst outcomes:

  • Restoration of voice and continue to have a mouth/nose airway.
  • No natural voice (beyond whisper) and continue to have a mouth/nose airway.
  • No natural voice and no mouth/nose airway (i.e. a stoma in my neck for breathing)

The first two are only possible without a full laryngectomy. The third would be the result of the full laryngectomy. Even without the laryngectomy, my voice might never restore. The anchor point of my vocal ligament on the thyroid cartilage seems to be missing. But, maybe not. It is not easy to tell.

A total laryngectomy would be a huge quality of life issue. It would restrict my activities quite a bit in ways that I really, really don’t want to be restricted. I know that this is creating a big bias affecting the decision to take a bit more risk. In the end, I’ll either regret this or not. I’ve decided to proceed with chemo-radiation. I should be able to return to work, but will be out at least 2 hours a day every day for treatment (chemo days I’ll be out all day, as it is about a 5 hour process). Two-three months of treatment, then we’ll see where we are. We might be right back to laryngectomy.

Meanwhile my chemo doc told me to fatten up. Later on, if I am queasy, I’ll need that energy. So, trying to eat 3 squares a day.

I should add that the above is a really condensed and biased synopsis of 3 meetings, each of which lasted 45 minutes to an hour. Which was pretty phenomenal considering I was basically a “walk-in” to all three. All the doctors said much more than what I’ve decided to relate, above, and I am sure I’ve skewed some of the details a bit. I recorded the meetings so that I could go back and review them (in lieu of notes), but didn’t have 3-4 hours tonight to do that. So, trusting to untrustworthy memory based on biased listening for this post. I might have gotten some of this wrong…blame it on me, not on the doctors. They were all great.

Tomorrow I go in at 7:30 am to be fitted for my head shield (cat scan of my head and upper torso so the shield can be prepped to my exact size). I’ll also meet the Radiation Oncologist’s research team (I agreed to participate in a trial that reduces the exposure of surrounding tissue to the radiation while keeping the same concentration of radiation on the diseased tissue). A possible benefit of the trial methodology would be less damaged tissue in the irradiated area in the event a laryngectomy is still necessary.

We’ll also have to see what happens as the tumor retracts from the areas of the thyroid cartilage that is affected. It could recalcify, develop hardened scar tissue, or just leave a hole. Hoping for one of those first two, as the third points back to laryngectomy. Also, the thyroid glands themselves are going to be, in the doctor’s words, toast. I’ll need to take thyroid supplements, but he said that is a well-developed protocol.

Even with all of the above, I’ll say again that all three doctors said that total laryngectomy is still quite likely even with successful chemo-radiation. No minced words. My hope does not equal either diagnosis or prognosis. So, I’ll whistle past the graveyard while I can still whistle.

Ok, enough for now. I need to finish my dinner before it gets cold. Tomorrow is another doctor day.

Throat Blog — A Good Nap Spoiled

Ok, my nephew (posting as my sister, reposting on FB as me) gave you most of this, but there are a few additional details.

First, this is the best mental day I’ve had in a couple of weeks. Why?

When I first got checked in and the anesthesiologist came by to tell me what he’d be doing, the procedure was still a total laryngectomy. 15 minutes later, after the surgeon reviewed the PET scan results, the procedure was radically changed for the better. I ended up getting basically a through-the-mouth biopsy. They knocked me out (I lost about 3 hours), went down my throat with their tools … oh, wait…not a good choice of words. They accessed the tumor through my mouth both above and below the vocal folds (ah, much better) and took samples.

I woke up sharp, but don’t know if I had awakened a few times not-so-sharp before that that I cannot remember…I suspect so. Just soreness in my mouth and throat. They gave me a Vicodin let me go home after. My sister and brother-in-law brought me down to my “home” restaurant in Mansfield. I finished almost all the grilled chicken fettuccine alfredo. Going to eat a Klondike bar now that I am back home.

Oh, and the PET scan showed absolutely no metastases. The tumor might be very slightly larger, but that could also be accounted for by the difference in resolution between the CT and PET scan. So, it is not rapidly growing like it did over the Labor Day weekend. We have time to look at treatment alternatives.

So, no metastases + still mouth/nose breathing + back to my own bed tonight = a good day.

I still do have bad things (squamous cell carcinoma, likely total laryngectomy, long hospitalization and rehab) but for the first time in a couple of weeks, I think I won’t sleep like a baby. Because, anyone who has been around sleeping babies know that “sleep like a baby” really means waking up every 3 hours crying.

Tomorrow I meet with a radiologist, oncologist (chemo), and my surgeon to go over options. The surgeon says total laryngectomy, but that he is open to having his mind changed based on input from the 2 other doctors and the tumor forum they have every Wednesday. My doctor was skeptical about any temporary return to work, as he seems to think immediate radiation and/or chemo which would not be conducive to driving, high-level functioning, or keeping food down.

I was concerned that all the life and work planning I had done for a long convalescence would make me look like the “Chicken who Cried Wolf” but he assured me that those preparations would still be necessary. Even if he is swayed to something less than total laryngectomy, there is still substantial damage to my larynx that needs to be addressed. We’ve not had that discussion yet, though. Perhaps tomorrow.

Oh, and the only thing that really spoiled the good nap was the sore throat…but that, at least, shall pass.

More Fact Finding, No Surgery Today

(Posted by Paul’s Nephew)

I know we are all sitting around refreshing so here is the latest update.  

Today turned out a little different than we all thought.    The procedures completed today include a microlaryngoscopy and bronchoscopy.  Both of these are accomplished with a scope and are non-surgical.  They took  approximately 1 hour and the purpose is to take some biopsies and visualizations.   

Tomorrow there will be a meeting with the “tumor conference” to work on next steps.  The diagnosis officially changed from sarcoma to squamous cell carcinoma.  Sounds like surgery is still a possibility for removal.  Additionally, chemo and/or radiation treatment are anticipated.   The PET scan showed no sign of metastasis which i believe is a good sign (even though I am far from being a doctor). 

Paul will go home today as well.