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.

Throat Blog — Tentative Parole Hearing on Sunday

When the doctor came around this morning, she removed the last of the tubes used to irrigate the neck leaks. If nothing looks bad tomorrow (redness, unusual swelling, etc), then I should be released on Sunday. Sunday marks Day 35. I am soooo ready to kick this place.

Meanwhile, I’ve been released by all the therapy teams here at the hospital (physical, occupational, and speech). I have not really talked about the speech therapy. Basically, they give me sentences to try to say using the electrolarynx. Overall, I have been disappointed in it, as it sounded much better before the surgeries. But, I’m still not able to use it under chin. Using the tube is always worse, I am told. So, once the wrap comes off and the swelling goes down, should get better.

But, it will never be my voice. And I will never be quick to be understood. Here is me and my voice before all of this. Another thing I won’t be able to do, again.

I get frustrated by not being able to immediately interject or respond. Some will say that is a good thing. 🙂 In fact, since I can’t talk, women say that makes me that much closer to being a perfect man.

Well, the coffee with breakfast is not doing its job. Still fighting falling asleep at 9 am (but fighting to go to sleep at 9 pm). Think I will go downstairs and soak in some rays before it gets too very hot.

Throat Blog — A Bit More Sleep

Last night they gave me some hydroxizine at bed time and, while not perfect, sleep was improved. I probably slept 4 or 5 hours (after 2 days in a row of not getting any sleep at all). Then napped away much of the morning, but don’t want to do that too much as that would also interfere with sleeping tonight. So, before lunch I chugged a Starbucks DoubleShot energy drink, which should keep me alert all afternoon. I might hit another one around 3 pm, but no later, as these last about 5 hours.

Meanwhile, no word on release, but I am now officially staple free. From a total of over 100 staples, they removed the last 30 a few minutes ago. They also removed my last drain. So, now all I have left are irrigation tubes coming out of each side of my neck. Imagine Frankenstein’s monster with red rubber tubes in the place of neck bolts.

Everyone agrees that the only thing keeping me here is the danger to my carotid. Not sure what they’ll use to determine that that danger is low enough to send me home…something for me to ask the doctor about. My weight is back on the gain. I had gotten down to what I weighed when I was 16 years old. Back up to about my 18 year old weight. Real food makes a huge difference.

Real food (and the resulting improvement to my digestive process) is also helping me to properly absorb some of the meds and supplements that they were giving me. Despite a fairly high dose, my thyroid levels were very low so they had put me on IV thyroid meds. They are now transitioning me back to oral (well, G-tube) and are seeing those levels come back up. Was also low on calcium, sodium, potassium, etc. Everything is up to a level that they aren’t too concerned about . I’ve been adding salt to my meals (for the sodium) and also have a banana every meal (potassium, among others). I don’t particularly mind taking supplements, but getting them from real food is a bit more satisfying.

So, Day 32 and will probably see Day 33 here, too. Keeping my fingers crossed that I’ll be home this weekend.

Throat Blog — Another Slow Day

Now, my status has changed to “wound management” so I’m mostly left to my own devices during the day. The doctors come through once early to irrigate my neck and then again in the later afternoon. Other than that, 3 walks and tried not to nap too much. Worked on my portfolio for quite a bit, today. I don’t have to spend a lot of time on it day-to-day, but twice a year I re-evaluate and rebalance. Usually wait until the end of June, but decided this was close enough.

As far as the medical front, when they first put the drains into my neck and irrigated them, I would get water in my mouth when they pushed saline into the irrigation tubes. Then, the right side stopped doing that. Now, both sides seem healed enough that no water goes into my mouth on either side. I suspect they’ll want to do another barium swallow test (I swallow liquid barium and they watch on a fluoroscope to see if any leaks into my neck when I swallow) before sending me home, but that is yet to be confirmed by an actual doctor.

I’m hopeful (for the second week in a row) that I could be home by the weekend. Fingers crossed.

Throat Blog — Take This Dog for a Walk

Busier day, today. Speech Therapist came by and helped me get started with the electrolarynx. I need a lot of practice, and am still reaching for the keyboard as my first reflex to communicate, but will work on that. You cannot really reproduce sibilants (s sounds). Count from one to ten…I get stuck at six, which has sibilants at both ends. And, it is difficult to reproduce hard letter sounds (d, k, p, t). Because of the bandages and wraps on my neck, I can’t press the unit to my neck. I have to use an adapter that is basically a straw that goes into my mouth…which also interferes with making words.

But, on the road to “talking” a little faster.

Both of my surgeons came by. The first was the one responsible for removing the tumor. He agrees that we are pretty much done for now. He passed on that he had consulted with my radiation oncologist and they are in consensus to not do additional radiation. I may do some additional chemo, but will see once I get discharged. He also said that it would probably do me some good to walk outside. I agreed, but reminded him that I was told that is against hospital rules.

The second surgeon, the one responsible for the grafts, flaps, and my continuing care for this visit also came by. Agreed that a walk would do me good and actually put it into my orders. I had offered that I could restrict to walking with a visitor. But, just heard that I can walk out on my own at any time to walk the park in front of the hospital. I just have to promise to come back. She also said that it is possible I could get out by the end of the week, but it entirely depends on whether my fistula had closed. Could be longer.

Sorry to cut this short, but I’m going to go for a walk.

Throat Blog — Slow Weekend

Nothing much happens on most weekends up here and this weekend is a perfect example. The only thing qualifying as interesting is the 5 minutes I had to spend in the hall during the severe weather warning.

I believe I’ve mentioned that I have some tubes sticking out of each side of my neck that allows the doctors to irrigate the fistulas. Up to yesterday, when they irrigated the area, some of the saline went into my throat from both sides. Today, it seems that the right side has progressed enough on the healing front that none of the saline went into my throat. Still some leakage into my throat from the left side, though, and, of course, the left side is the one that was of more concern due to its proximity to a major vein.

I don’t see my regular doctors on the weekend, so no way to get an answer, but I am otherwise really ready to get out of here. They may want to continue to watch that left side until it closes enough to not leak all the way into my throat. They also might want to do another barium swallow study once that leak closes to ensure that the throat side has fully closed.

My to-do list of things I need to take care of when I get home has now grown to be longer than my list of comments and questions I have for the doctors (which is basically down to “When can I go home?”). And, those to-dos will take extra time because it will take me a week or two to get up to being hale enough to do very much at once. But, most of them involve driving somewhere and sitting, so should be able to manage that much.

I noticed that my watch (which is also an activity monitor) has a message that sleep data is unavailable. When I tapped to find out more, it said that I need to be wearing it for at least 4 hours while sleeping. Well, it would be nice if I could get more than 4 hours of sleep at night, but I think that isn’t going to happen until I get home, and even then the cat probably won’t allow it for a couple of nights. I try to take a nap during the day, but even that gets interrupted by vitals checks and routine rounds (and the occasional severe weather warning).

So, watching the remaining drizzle roll down the window, about to order dinner, considering pre-emptively packing my bag.