Early November Update

Well, it has again been a while since I’ve updated my status, so here goes (I’ll try not to ramble on too much). Actually, have not been a lot of changes.


I’ve finished my 4th round of chemo last weekend. Chemo rounds really affect me the most in the first week after treatment…I am pretty tired every day. But, by the second week things are getting better and by the third, I’ve almost (but not quite) recovered to my pre-chemo state. Of course, then it is time for another round, so as long as I’m in treatment I never really fully recover. But, unlike the first major chemo I did, the drop each round is much less…that first time I don’t think I could have taken another round of chemo and continued to be able to walk. But, that chemo was much harsher on my system than the cocktail I’m on, now.

Last weekend was my last scheduled round, for now. That could (and likely will) change after next week. On 11/7 I’ll have a CT scan to see how the lungs/liver tumors look and also see if anything else is cropping up. Once we get those results, decisions will be made as to how to proceed with treatments. I really wish one of the “cancer vaccine” trials fit my profile. Many of those are showing amazing results in clearing tumors throughout the body without systemic impairment. What I’m on now, while somewhat targeted to only the tumors, still knocks down my entire immune system and does a number on my red-blood cell count.


I ordered a hands-free speaking valve and assorted accessories from a medical supply company. They implied in email that this would be covered by insurance, so I went with a brand that I’m not that fond of. They did say I’d have to file the claim myself. Should have been a clue. I spent nearly $1,000 on supplies, only to find it was all out-of-network (thus out-of-pocket). Also, it doesn’t work very well…still having to use a hand to my neck to get the voice (such as it is) to work. Basically, the device has a little flap that closes when you exhale hard…which makes the air go into the little valve going into my esophagus instead of out my neck.

So, I’ve just ordered my preferred brand, knowing that it also will not be covered by insurance (and around $600, but I’ve tried it in the doctor’s office and it seems to work much better). Seems that routine supplies (basically air filters that snap onto an adhesive base over the stoma and certain types of those bases) I can get w/insurance coverage. Of course, those are also the least expensive components.


The good news on my shoulder is that the accessory nerve that enervates the trapezius muscle is coming back to life. The bad news is that it was “down” for so long, my trapezius is severely wasted. So, I’m going to Physical Therapy every week and getting a set of exercises to help restore normal shoulder function. There are about 12 different exercises, most of which I am supposed to do while laying down. Right now, if I lay down, I go to sleep. So, my at-home exercising is not as frequent as it should be. But, even with that, I can tell a positive difference. Pain in the shoulder is less. And, I can see a bit of muscle tone coming back (albeit very slowly). Hopefully will be able to do more as my post-chemo stamina returns.


My weight is definitely up from the low dive to 121 lbs after that first chemo round (and week-long hospital stay). I got up to 131, but this week have dropped back down to 127…but a drop the week after chemo seems to be normal. I expect I’ll gain a bit more over the next two weeks. Main issues is just not being hungry. I’ve avoide outright nausea, but have never been one who could eat when I don’t feel hungry. Dronabinol is helping with appetite. Also, the steroids I take for a few days after chemo probably keep me from losing even more. All I can do is eat what I can. Trying still to stay low on the sugars and prioritize proteins, but some things (those things usually being proteins) just taste aweful, even with the lactoferrin supplements (which have definitely improved my sense of taste…but not to perfection).


Steatorrhea (fatty stools) continue with maybe a slight improvement. I’m beginning to wonder if it might not be associated with the liver tumor(s). Bile (which digests fats) starts out in the liver, moves to the gallbladder, then is purged into the intestine when you eat. Hopefully treating the tumor in the liver, as we’ve been doing, can help to resolve this. Mostly it is a concern for fat-soluble vitamin absorption (Vitamins D, E, A, and K).


Hey, something unrelated (mostly) to health issues! My contractor finished the remodel on my kitchen and baths. I’m digging the full-sized shower in my master bath…so much nicer than stepping into a tub to take a shower. Also looks so much better. Tomorrow, new kitchen appliances are going to be installed, which will almost finish the domestic re-organization. What is left is to put everything back into the cabinets where they belong (didn’t want to do that until I got the new appliances in and considered what other changes I might want to make).

Well, I’ve also been too fatigued to really do much on the putting stuf where it belongs front, and up to a couple of weeks ago my shoulder really limited my ability to lift things into the upper cabinets (even lightweight stuff).

Next up, I’m disposing of a home gym that has been in a front bedroom mostly unused for a couple of years. I think it will be gone, tomorrow. Then the plan is to clear out the other stuff stored in that bedroom (which is mostly going to the curb). Then, take the hall bedroom and clear it out, using the first bedroom to put stuff I want to keep. Tentative plan is to put some photo studio stuff into that bedroom. Next will be to clear some things out of the living room into one of those bedrooms to unclutter the front of the house. Then, I should be finished (I’m guessing some time in 2022).

I’ve been in the house for 35 years and have way too much old, useless stuff sitting here and there. Not a hoarder…I have no issue getting rid of this stuff. But, things I see every day tend to become invisible to me over time…occasionally I’ll look with fresh eyes and “oh, crap, I need to clear some of this stuff out.” We recently had an electronics recycling day at work, and I think I would have won the prize for most stuff recycled…big CRT TV, computer monitors, and old PC components, some over a decade out of date.


I am still coming to work every day. The week after treatment, those days are a bit shorter…I can get here early, but if I wait to late to leave, driving home becomes dangerous. I have fallen asleep at a stop light one time when I pushed it a bit far and woke up to horns honking and a green light. I’m sure they assumed I was texting.

Productivity is not up to par. Hard to concentrate when fighting drowsiness. But, still effective enough. My main concern is staying away from sick people as the flu season progresses. I did get flu, pneumonia, and shingles vaccines this year, so have some protection. But, chemo knocks down the immune system overall, so unsure exactly how much protection I will have. Have already had a few people in the office come down with what was probably the flu, but I stayed well away from them (and they me).

When I was going through chemo last year, I worked from home nearly the entire month of January to avoid getting sick. Trying to keep as much office time as I can this year, having missed so much due to hospitalization already (nearly 3 months in the hospital this year).


Well not that short of a post. But, at least I gave you headings so you could just read what you might find interesting. Really next up for me is wait and see what the CT fairy brings next week. Try to eat more. Try to do my therapeutic exercises more. And maybe post a bit more often so that these are shorter.

Throat Blog — Poor Taste

Ok, maybe you though I was going to talk about my sense of humor. A good guess, but no, this post is about how chemo has altered my sense of taste.

Around the end of round 1, I started having altered taste, and now it is pretty extreme. The altered taste falls into one of three categories:

  • Taste is modified to something usually bitter or bad in some other way.
  • Taste is muted to neutral “mush” taste.
  • Taste is amplified.

Example, most Mondays I go to a favorite Italian restaurant and get a cup of clam chowder and a Lance Armstrong (that is a side spaghetti with one meatball).

The noodles tasted fine. The marinara tasted metallic, and the meatball tasted like it had been soaked in acetone after the acetone had been used to clean engine parts.

Sweets and salts tend to be amplified. Umami flavors (mushrooms, cream, etc) tend to taste OK.

So, that, combined with a general lack of appetite and early satiation have me fighting to maintain a bantom weight of 121.7 lbs. As a point of reference, I weighed about 134 before the first cycle started on 8/23.

Doctor prescribed Dronabinol which is a man-made form of THC. It is supposed to help with appetite, and does not get you high. I’ve been trying it since Saturday and it might be helping a little…my weight has plateaued at 121.7 lbs. Hopefully it will stop dropping, now. I’m getting “crepe paper” skin all over.

I don’t feel particularly great, but also not particularly bad. Somewhere in the “meh” zone. No real nausea…but I’m sure if I kept eating after my “full” signals started firing that could quickly change. So, also trying to spread out the calories. Going to switch to some other side pasta (maybe Fungus Fettuccini). And, keep on keeping it down.

Last Week Really Sucked

Going into the Labor Day weekend with a kidney stone was bad enough, but starting in the middle of the night on Sunday, my backside actually did start hurting. Bad enough that I drove to UTSW ER at 7AM with intense (level 7-8) pain. They diagnosed as a thrombosed external hemorrhoid. ER team tried to cut it open and remove the clot, but all they were able to do was cut it open. The clot was too deep to reach. Sent me home with instructions to sitz bath every few hours with assurances that, while this would make it bleed a bit, it would also flush out the clot.

Four sitz baths later, and there had been no bleeding. And, pain had progressively gotten worse instead of better. So, around 10pm, made the drive back to UTSW ER. This time, at triage, they found I had a temperature of 102.2 F. Something they were much more worried about than my buttache. But, they did re-examine to make sure that the area had not become infected. What they found was a 2nd thrombosed hemorrhoid. They admitted me to the hospital, not for what I drove there for, but because my blood work showed that my neutrophil count was 0. Neutrophils typically make up over 50% of your white blood cells, and are the first line of defense against infection. 0 is bad.

They also found a little fluid in my lungs (not enough that they would normally worry about) and wrote me up as at risk of having pneumonia. I really didn’t feel any other symptoms that might point to pneumonia, but with the other pain going on (peaking at 9 if I coughed) it could certainly have been masked.

The main blessing of moving to a room was that I got to start on painkillers. I am not normally a major painkiller consumer. But, this time, I took both the Narco and the Dilaudid as often as they would give it to me.

Tuesday was not much better. Colo-rectal team came around and tentatively scheduled minor surgery to directly address the hemorrhoid situation. Urology came by to tentatively address the kidney stone (it had not passed, but was no longer hurting…they were concerned that that kidney might have been infected and would need a stent put in to drain away infected fluids so as to keep it from spreading (sepsis).

In the end, both procedures were nixed because of the whole neutropenia (low neutrophil) situation.

Meanwhile, I do need to cough pretty strongly to keep my airway clear of mucous. If I don’t I really wheeze. Alternatives are swabbing it out or using suction to clear it. But, both of those options really make me cough uncontrollably and deeply. Respiratory Therapy came in and decided that we should try suction. I warned them that making me cough hard resulted in agony. What I did not warn them about (because I did not yet know this) was that coughing hard would also make me loose all control of my hemorrhoid-ridden zone.

Sure enough, they poked the suction line too deep and I started coughing, probably crying, and most definitely pooping. It is the only time (well, that I know of) that I have been grateful that I have no sense of smell (well, the sense is there, but since I have no airflow through my nose, odors never make it to the sensors). Oh what fun. Well, at least it allowed me a trip to the shower (while the nurse and tech took care of the aftermath). Came back to clean bedding, and another dose of Dilaudid.

This happened twice more (with a bit more control, so a lot less mess) before I learned not to mess with my airway until about 10 minutes after a shot of Dilaudid to moderate the pain and cough. I had an idea that the doctors allowed…provide me with a numbing spray (benzocaine, in this case) that I could spray into my airway before messing with it. The caveats were that, a) since the area would be numb, I should be very careful not to injure myself, and b) if I did injure my airway even a little, I would likely have a horrible extended coughing fit when the numbness wore off. Believe me, I was very careful. This worked! I had no further problems after doing this.

Wednesday all departments finally decided that any surgical intervention of any kind was definitely off the table. So, I should have been allowed to start eating. But, one of the teams insisted that I have a swallow study before being allowed to eat. I asked why. The reason was, they didn’t read my entire chart (which, admittedly, must be novel-sized at this point). They were worried about risk of aspirating my food. What??!! I calmly (well, maybe not so calmly) explained that there was no connection between my mouth and my airway. The only way for me to aspirate food was for me to uncap my airway, take a bite and chew, then let the chewed food dribble down my neck into my stoma. I hope I am years away from being in that condition.

So, then they said I could have soft foods. Again, What!!??. I’ve been eating any- and everything for a month, now I need to start eating pap? They relented and allowed that I could eat whatever I wanted.

So, I ordered food. But, nothing tastes good, I seem to fill up quickly and, honestly, didn’t feel that much like eating in the first place. Appetite is in the basement. But, I tried to get down what I could several times a day.

Late on Wednesday, they decided that I should get a catheter, to be sure that urine wasn’t stranding in my bladder (which could have also caused the possible infected fluid behind the kidney stone to back up and cause sepsis). Fine, what is one more hose at this point.

Throughout, the hemorrhoid situation, basically left untreated, didn’t get any better. After each trip to the toilet, I had to use the shower for hygiene. Now, I say “basically untreated” but I did have 2% Lidocaine and a steroid/lidocaine mix (could only apply every 5 hours) to use to apply to the area. They helped, some, with the pain.

On Thursday, they started giving me shots to boost my neutrophil production. By Saturday, neutrophils were back to being on the low side of normal, and I hadn’t had a fever in a couple fo days.

On Friday, I talked them into stepping the Lidocaine to a 5% strength. That was a bit more help. Biggest trigger for the pain (other than cough) was going to the toilet. I would warn the nurse so that she would have the Dilaudid ready to shoot when I got back to the bed.

Anyone who has seen me in the hospital knows that as soon as I feel well enough to move around, I put on street clothes and move to the couch. It is telling, then, that this trip I never sat on the couch. And, because of the potential for accidents, wore only my hospital gown with nothing underneath. This, up to the hour before I was discharged.

Which brings us to Sunday. The hospitalist came in fairly early and let me know that I would be being discharged because labs and fever had both been good for a couple of days. I estimated 3pm. Sure enough, got the final paperwork at 3pm and they wheeled me down to the curb. But, before leaving they also had to remove the catheter, which they did around 11 AM. When I had my first bladder void (maybe 2 PM) I also passed the kidney stone (which, oddly enough, was about the size, shape, and color of an uncooked kidney bean). So, one less thing to worry about.

Driving home was painful, but getting home was good. Was able to sleep, uninterrupted by anything other than the cat (who was not nearly as manic as he had been after my two-month absence). And, in the days after coming home, my achy-brachy parts are no longer so achy. Not back to normal, but I’m able to sit at my desk for a major fraction of the day. Actually made it fully through the day on Monday, but Tuesday had to take off a bit early (pain, tiredness).

Back to being in a state of “I can sleep at any time…just let me close my eyes for a minute.” Although I sleep through most of the night, I must not be getting very deep sleep…I’m just flat-out sleepy. And, no pain meds (other than the topical ointments) since Monday, so can’t blame feeling dopey on dope.

Long post ending. While I had my laptop with me, I was never “with it” enough to write coherently. Chemo round 2 (for this treatment cycle) starts Friday. Stay tuned!

A Real Pain in the Back Side

No, not my backside, the left side of my lower back. Started last night, but was tolerable until about 7AM, when it started spiking. Managed to get up, showered, dressed as the pain level climbed 6, 7… still rising.

So, took the long (40 minute) drive to UTSW Emergency Room. I could have gone to Medical City, Arlington (10-15 minutes), but nearly all my recent medical history is at UTSW. Pain peaked, then disappeared, of course, just before I walked into the ER. Considered, briefly, going into the office, but from past history I figured that this was another kidney stone and that the pain would be back.

Last time I went to UTSW ER I waited hours to get into an exam room. This time, I was ushered straight in. Slow morning, I guess…there was only one other person in the triage area when I got there, and he was taken back to an exam room about 5 minutes after I got there. They started an IV, took some history, took some blood, and sent me to get a CT scan.

About time I got back from the CT, another wave of pain hit. Spiked up to a 9 and held there. Doctor ordered some IV pain meds which couldn’t get there soon enough. It knocked the pain back down to a 3 or 4, then it was just waiting for the test results to come back.

CT confirmed a 5mm stone in a ureteral duct on its way from the kidney to the bladder. Had to wait for blood tests to confirm no infection (if there had been an infection, I would have been admitted). Then, cut loose around 2:30pm.

Hadn’t eaten all day, so grabbed a late lunch and went to the office for a little while. Well, a very little while…long enough to pick up some things I wanted for the weekend and check to see if there were any emergencies. I’d kept up with all my emails while at the hospital waiting for the test results, so knew that there wasn’t likely to be anything hugely urgent late on a Friday the day before a 3-day weekend. Still, I have 4 or 5 hours of work to do tomorrow to get some things out that really need doing before Tuesday (main thing needs to be done before Sunday).

Speaking of eating, after 4 days or so of little to no appetite, it has come back. I think that the long-acting anti-nausea meds might be what killed my appetite…one wears off in 2 days, the other in 4 days, and I got the last Friday. Around Tuesday I started feeling very hungry, so have been eating normally (or maybe a little more than normally) since then.

Meanwhile I did find an effective treatment for my insomnia, albeit one that I would not recommend. The combination chemo cocktail I had last weekend (carboplatin, atezolizumab, and etoposide) has resulted in my insomnia going away, at least for this week. Every day, I manage to grab dinner, but as soon as I get home, I’m out like a light. Doesn’t matter if it is 7pm or 8pm…I’m out (other than getting up occasionally to take care of pressing bio issues) until I drag myself out of bed the next morning.

So, such fun going into a holiday (sort of) weekend. In addition to my work-work tomorrow I also need to clean up/put away some stuff in preparation of my nephew and his family coming over to help on Sunday. Nothing horrible, but I do have too many pill bottles out in the living room (where I’ve been sorting my meds into their daily doses) and need to lock up my weapons. Then, need to empty some of my storage bins so that we can use them to pack up the kitchen. Then, Sunday they’ll be here early and will work until lunch with my Mom. Hopefully the work-work I do tomorrow wont’ generate any emergency corrections and I can actually relax on Monday.

A Little Wiped Out

Well, maybe more than a little. Chemo 3 days in a row (Friday / Saturday / Sunday) and now a couple of weeks off to let it do its thing before the next round. Friday wasn’t too bad, other than lack of sleep from the night before. Saturday, I went home and took a long nap. Sunday, an even longer nap.

Monday I had early morning follow up appointment with my throat surgeon, then went into the office. Around 4 I realized I’d better leave if I wanted to stay awake for the drive home. Stopped by and got some soup for dinner, then on to the house. In bed by 7 pm. Barely crawled out of bed a little after 7 am. I could have stayed home, but then I would have just veg’d all day. Came to the office and am able to get some work done, but not up to my stellar productivity standards.

Biggest side effect is fatigue. But, I’m also not very hungry and the lymphedema (fluid build-up) in my neck seems to be a lot worse than before treatment. Don’t know if that is a side effect of the chemo or a side effect of not being very active the last few days. But, I’m still spared nausea.

I had ordered some accessories for my car (roof rack and other similar) expecting to install them when they got here. Well, I can’t even get them out of the back of the car, now. Rather than wait a week or two to feel up to it, one of my nephews is going to come over this weekend and put them together and on the car for a bit of walking around money. Also a few house tasks (all my kitchen cabinets need to be emptied in advance of a remodel that starts in a couple of weeks) so tapping him for that, as well.

Didn’t expect this big of an effect so quickly. Hopefully that means the tumors are getting kicked just as hard…or harder.

Thursday I have planned to have the feeding tube into my stomach removed…I’ve not used it in a couple of months and it is a constant irritant. Unless my mouth/throat develop sores (a possible side effect) my eating should not be affected (well, other than the loss of appetite, which I hope comes back during the pause between treatments). Actually, I could remove it myself, but the doctors really frown on that (you just deflate a balloon and pull). But, after that I have a complete break from doctors for a whole week!

Well, about ready to take a nap…but since I’m still at my office as I finish this up (started writing it yesterday), I’d better get a few more things done before heading home, where I will really try not to go to bed too early.

Chemo Starts Tomorrow

That says it all. Well, I suppose there are one or two other things I could add.

I overall feel pretty good, other than some right should pain and continued bouts of insomnia. Chemo treatment might actually be good for the insomnia (if it makes me fatigued, maybe I’ll sleep better).

The 3-drug cocktail I’ll be on will involve about 5 hours in the infusion tomorrow, then an hour or two on Saturday and Sunday. Then I will be free of treatments for 2 weeks before doing another round. Side effects are expected to be mild…much milder than last Summer. And, the oncologist seems pretty confident that the liver tumors will respond, as will the lung tumors. He was not worried too much about the liver tumors (of course, it isn’t his liver we were discussing). And, after I’ve had a few rounds of chemo there will be some other options we can look at for burning out the tumors with targeted beams.

Yesterday, I helped set up a trade show. Did the same thing 2 weeks ago. 2 weeks ago I overdid it big time and had a lot of right shoulder pain for several days. Yesterday I managed to only overdo it a little…so I have a little shoulder pain, today, but not bad at all. That shoulder won’t really have an opportunity to get much better until and unless the nerve that goes to the trapezius muscle regenerates. That muscle is basically gone, so the wrong muscles are taking over…which pulls my shoulder in the wrong directions when I try to use it with any effort at all. I have exercises to do, but they won’t be completely effective until I regain control of that muscle.

So, that is the quick update for today. Hoping that chemo is as benign to my overall system as expected (but that it is as effective at attacking the tumors as we hope).

Catching Up on Happenings

Sorry about the dirth of posts, lately. I’ve been pretty busy during the week days (working) and pretty much crashing on the couch most nights when I get home. But, right now I’ve got a little down time waiting for an appointment to start.

So, a quick review of my status:

  • Sleep is a little improved, but still not great (thus the crashing).
  • I’ve gained 7 lbs in 3 weeks and still gaining.
  • Wasting from malnutrition and inactivity in the hospital causing some right shoulder issues.
  • Lymphedema is slightly better, but goingto physical therapy for that, too.
  • Last Friday had an ER visit due to shortness of breath (probably dehydrated).
  • CT during ER visit showed suspicious area in liver, but not conclusive of anything.
  • PET scan on Monday shows the expected multiple nodules (tumors) still in lungs, but also likely tumors in liver.
  • Expected chemo protocol will not change. Expect to start in a few weeks.

Ok, so a little more detail. On the sleep front, during ER visit, told the ER doctor that Ambien was also not weinsomorking. She prescribed two meds that seem to be more effective: one for restless legs (which really cause the insomnia) and another to help me get to sleep (sedation). This combination seems to be working better. I still have some nights where getting to sleep is difficult, but do sleep through the night once I go out.

I’ve been eating well. I am trying to change my eating patterns to get most of my eating done at breakfast/, then a lighter dinner. I am doing this because, as a result of all the changes to my neck and throat, the sphincter that normally keeps food down is gone. So, if I lie flat and have anything at all on my stomach, it wants to flow on up into my mouth and nose. So, trying to make dinner lighter and earlier and also propping my shoulders up to go to sleep. Once my stomach empties, I tend to shift on down into the bed with no issues. Overall, though with the better eating, my energy levels and weight are both improving. I’ve gained back about 7 lbs since I started eating by mouth, again (about 3 weeks ago). Not really limited on what I can eat… I just have to be sure to chew very well and wash things through with plenty of liquids to keep food from sticking in my esophagus. No risk of choking…no airway that way…but when food is stuck, the next just bounces back into my mouth.

I am, though, seeing the effects of malnutrition. My upper body pretty much wasted away. So, now I am having to do physical therapy to try to restore some of the lost muscle. This is more complicated than I would ever have expected, as I can’t just lift weights. Because some of the muscles are so far gone, if I just lift, my body will recruit the wrong muscles and do more harm than good. So, I have some very specific, almost no-weight, excercises to do that isolate to those muscles that I’m trying to build back up. In the clinic, they are using some sensors that they put on the muscles I should not be using…if those muscles are used a little box beeps. I have to concentrate on relaxing those muscles during the exercise to stop the beeping. I’ve ordered a similar (but much less expensive) unit that will do the same thing through an app and that I can use at home. I’ll report later on how well that works…probably won’t have it until next week.

While on the subject of physical therapy, I’ve also started therapy for the lymphedema (swelling in my face and neck). It involves some specialized massage (very light) starting around my torso then moving up into my face and neck. Lymphedema has improved some, but still neck is too swollen for the electrolarynx to work, well (and I keep forgetting to carry it with me). That is actually the appointment I’m waiting for right now.

While I’ve generally felt ok, last Friday morning I woke up at 4:30 AM feeling like I could not get enough oxygen. Checked my O2 level, and it was 98, so it was not actually lack of oxygen. Checked BP and it was 80/60, which is probably why I felt the way I did. I got up for a little while and checked again…BP had come back up to 125/80 and I felt better. Went back to sleep. Woke up feeling meh but went to physical therapy then on into work. Around noon, I still felt “off” and also my hands were starting to tingle (which my Dr said to watch for and immediately come in if happened) so I went to UTSW ER. Unusual for a mid-day ER encounter, I waited 6 hours in the waiting area before getting an exam room. By then, most of my symptoms had abated. I explained my reason for coming and posited that it was likely to be either dehydration or a blood chemistry issue. ER did lab work (all OK), took an X-ray to rule out pneumonia (also OK) and a CT to rule out PE clots (also OK for that, but found other unrelated things). They gave me a bag of fluids, coming to the conclusion that it was likely dehydration and sent me home at 1 AM.

As to the unrelated things on the CT, it showed some suspicious but inconclusive spots on my liver. I emailed my medical oncologist to be sure he also saw the scans. He advised that it would not change my planned therapies.

Monday I had my scheduled PET scan (mid-cranial to mid-thigh). Results from it were more detailed, showing the expected lung nodules (some had gotten bigger in the 4 months since I stopped my last chemo rounds). But, also showed unexpected likely tumors in my liver. Not very large, but any additional metastasis is distressing. I have an appointment in a couple of weeks with the medical oncoogist, so will get a better update, then, and will also get a definite start date for chemo. I believe he wanted to be sure I had built up some reserve (i.e. gained weight) before starting. I’d be OK with starting tomorrow, but a couple of weeks shouldn’t matter in the long term.

Next big thing will be a procedure next Tuesday to punch a hole from my trachea into my esophagus and install a one-way valve (TEP). This will allow me to close my airway during exhale to force the air into my esophagus and mouth, enabling me to vocalize better…well, as right now my vocalization is at 0%, anything above that will be better. I have heard other patients talking this way and, while it isn’t like a true voice, it is louder and more understandable than using the electrolarynx. Hoping for the best on that.

So, that catches things up. Should be about time to go into my PT session, so I’ll leave it off, here.

Throat Blog — Changing my Sleep Strategy

I have had a heck of a time getting to a normal sleep pattern. For 6 weeks, I basically snatched an hour here or there as I could, as even at night they would wake me up for something every couple of hours. So, my sleep schedule is totally messed up, even 3 weeks later. I have no problem dozing off in the afternoon, but when I go to bed, sleep is just a dream.

To try to battle this, I’ve been trying very hard to avoid those mid-day, mid-afternoon, early-evening, etc. naps. That is really tough, because when I sit down, I shut down. So, I’ve also resorted to taking my pain meds just before I head to bed. That worked a little, sometimes, but only for a couple of hours. Plus, I’m not really in enough pain to need pain meds…pain isn’t what is keeping me awake. Add to that, even taking one pain pill a day has started to cause some other digestive issues which are entirely the opposite of the issues I had nearly gotten used to.

So, yesterday I decided to try to turn my strategy upside-down and treat it as I would on one of my many trips to Asia. Back in 2003, before my first trip, I got a scrip for Provigil, a drug used to prevent sleepiness that has no other side effect for me. It is not like an amphetamine that amps you up. It just keeps you from going into that state where you are involuntarily nodding off. I’ve even taken one, then gone to bed and slept fine just a couple of hours later (each pill has about a 4 hour effictive time). After over 15 years, that scrip of 30 pills had finally dwindled down to a single pill, which I took as soon as I got home, yesterday, after a drive home where I battled falling asleep at the wheel most of the trip.

I did nod off for about 15 minutes, but the TV was on, and I roused back up. And managed to stay up and active all evening. Then, when I went to bed, I fell asleep within minutes and slept most of the way through the night. Not a perfect night’s sleep, but the best I’ve had in nearly 3 months.

I’m hoping this single dose will have helped enough to reset my clock so I can sleep un-aided tonight. If not, I’ll request a new scrip (back in 2003 I had to pay completely out of pocket at $10 per dose…maybe insurance will cover it this time). The side effects are certainly less than the narcotics, and if it works I’d pay out of pocket again to get my days “right side up.”

Other than that, working, driving the new car around on the weekend, and trying to stay out of trouble. Mostly.

Throat Blog — A Weak Week

Weak pretty much sums up my main complaint for my first week out of the hospital. I am still slightly anemic, and do have a bit of orthostatic hypotension (faintness if I stand up too quickly). But never actually passed out, and for the most part able to “gut it out” to get things done.

And, I got a few things done. Off of my to-do list are:

  • Hiring contractor for kitchen/bath updates. Still need to pick fixtures, but know the general cost and who will do the work. Contractor can’t start for a couple of months, so will have time to ease into my part of the prep work (emptying all the cabinets).
  • Starting arrangements for some landscaping work. Over 35 years in this house my sloped front yard has gradually slumped. And my grass is dirt. So, going to have the front yard regraded, have a few sprinkler heads put in (watering on schedule is the main reason for the major dead spots), have sod planted, have a dead tree removed, and have some limbs trimmed back from my power pole lead.
  • Decided on and put the down payment on a new car. Ford Flex. I imagine I’ll post about that later…but it is coming up from Katy, TX so won’t do the switch until later in the week.
  • Took a License to Carry class. Still need to get fingerprinted and wait for the background check. Again, I’ll likely expand on that in a later post.
  • Took many (probably too many) naps, both intended and unintended.

One unexpected task was having my g-tube replaced. On Thursday evening one of my pills (magnesium citrate) decided to harden and totally block the g-tube. I tried pushing the syringe plunger pretty hard. Also tried pulling the syringe plunger pretty hard…that just collapsed the tube above the clog. Tried warm water, but not convinced any of the warm water made it to the clog. Then, I went McGuyver on it. I have some unopened guitar strings. The “A” string looked to be about the perfect size to “roto-root” the g-tube. Tried it, and it actually worked!

But, the A string is made up of a tiny inner wire wrapped by another coiled wire. From the factory, the inner wire sticks out an inch or so. I should have cut off that part of the wire, because in addition to clearing the clog, I also must have punctured the balloon that inflates to hold the tube in my stomach. Tiny hole, so slow leak. I was able to push dinner with no issue. But, when I got up Friday morning the entire tube was about halfway pulled out. I pushed it back and taped it down, but when I tried to draw fluid out of my stomach (to ensure that the other end was in my stomach) all I got was air (meaning that it was just in my abdominal cavity). So, couldn’t do morning meds, get water, or get any nutrition.

I had scheduled and paid for my license to carry class on Friday, so didn’t make it to the Medical City Arlington ER (didn’t see the point in driving to UTSW for such a minor issue) until about 4pm. Actual time in the ER was only 2 hours. They said that this is not an unusual thing to have happen (well, in general…they hadn’t ever heard of it happening due to a guitar string). Only snag was that they did not have the same size tube as was previously installed (an 18). First, tried a 20, but despite the doctor pushing hard enough to really hurt (and to make the hole bleed a little), it wouldn’t go in. So, he switched to a 16, which went in easy peasy, but is a smaller size, so feeding is a little slower.

I am trying to not look too closely at myself in the mirror after my shower. I am really thin. No upper arm muscles. Glutes, thighs, calves are mostly gone. Pecs don’t peck (actually left pec will never come back as it is now in my neck). I made it about 5 minutes on the exercise bike before having to stop. But, I can walk pretty much indefinitely (well, after the sun goes down…not acclimatized to the heat at all). So, slowly working on extending my capacity. This will be a long process. But, hey, it gives me something other than “napping” to do when I run out of other to-dos to do.

Well, if I am going to get up early enough to work a (mostly) full day, tomorrow, I’d better get to bed. So, catch you later in the week.

Throat Blog — First Day Home

According to my fitness tracker, I slept 8 hours and 13 minutes last night, of which 6 hours and 15 minutes were restful. According to that same tracker, I have had less than 2 hours of restful sleep in any one night for the past several weeks. Really made a difference. Over the weekend, I had to fight falling to sleep all day long. Today, I lasted until an early afternoon nap (that could have also been a little drug induced).

Got up around 6 am, fixed my breakfast and watched the news for a while. Took a long-overdue shower in my own bathroom. Then headed out to start knocking some of the items off of my to-do list. First up was to get the car inspected. Done! Had a few groceries and other items I needed for the house so stopped at Wal*Mart. Done! My glasses are broken and my last eye exam was 3 years ago, so stopped by the optometrist to schedule an appointment. They were able to see me at 12:15, today, so I stuck around and got the new prescription and ordered new glasses. Nothing I can do about my broken glasses until the replacements get here, so I’ve still got to fight to keep them on my face. But, after 2 months of them being like that, another couple of weeks won’t be much of a hardship. So, Done!

And…that was enough of an outing for my first day back. I am finding that the muscles in the back of my neck really start to pull after I’ve been up and active for a while, and that can turn into a bad headache. So, I mixed a pain killer in with my lunch and let them all drip in together. And, took a nice nap on the couch with the cat.

But, the to-dos didn’t stop there. Since the car was inspected, I can now also register it online, so I took care of that one, too. The only tasks I have left are ones with hard times and dates (appointment at my credit union, meeting with a contractor). But, I also have a few untracked tasks. I am interested in a new car and have narrowed my selection to three models. So, Wednesday I might start taking some test drives to narrow down my selection. Basic criteria for the new car is:

  • All Wheel Drive
  • Advanced Safety Features (adaptive cruise control, collision avoidance, etc).
  • Not black, white, or any shade of grey

My short list is down to:

  • Kia Palisade
  • Jeep Grand Cherokee TrailHawk
  • Ford Flex

All are about the same price. It will likely come down to results of the test drives and in-stock availability. The Kia and Ford both have a dirth of AWD in the area, and the Jeep dealers seem to love black, white, and grey.

So, about ready to push some dinner down the tube and head off to bed for another restful night.