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.

Throat Blog — Wrapped a Bit Too Tight

Before I get to the subject, more important news to start with. I had 3 square meals today.

Breakfast:

  • 2 eggs scrambled and pureed
  • Banana
  • Cream of Wheat
  • Orange Juice
  • Milk

Lunch:

  • Pureed Beef
  • Pureed Carrots
  • Pureed Broccoli
  • Pureed Mixed Berries
  • Milk

Dinner:

  • Pureed Chicken
  • Pureed Broccoli
  • Mashed Potatoes
  • Milk
  • Orange Sherbert

Everything went through my G-tube with minimal problems. I did have a couple of instances where I pushed the syringe too hard without holding it onto the tube hard enough spraying whatever I was eating at the time all over…but I have a bath towel over most of what was within the target zone, so not much actual mess.

Now, to the subject. When the residents came through this morning to check the drain tubes, they also put a compression bandage around my neck, pretty tightly (on direction of the surgeon). It felt weird all day, but when the surgeon came through this afternoon she immediatly commented on how swollen my face was. Seems the compression bandage was a bit too tight. I went and looked at myself in the bathroom mirror and I look like someone who just had all 4 wisdom teeth pulled.

She loosened the bandage a bit. Note sure if it was loosened enough. I think the swelling is down, some. We’ll see how it is in the morning when the residents come back. If it is still swollen, maybe a bit more loosening is in order. Of course, if it isn’t swollen I’ll have to somehow convince them to not make it so tight, again.

Meanwhile, I got my mail, my electrolarynx, and my beard trimmer. Sorted and threw away most of the mail. Played with the electrolarynx a bit (going to need to practice a lot, but more on that later). About to go spread a towel across the bathroom sink and get rid of as much of this hair that has accumulated on my face the past 3…nearly 4 weeks as I can.

Throat Blog — Hangry

Procedure went well, by all accounts. I now have 2 little red hoses coming out of each side of my neck so that the fistulas can be irrigated to keep them clean. Doctor indicated that I’d go home with them and do that myself. Residents did not have that understanding. I’ll let them sort that out.

Wednesday after it was too late to order food, they put me on a puree full diet, so I can put any food that will puree into the g-tube. But, they cut off all food before the procedure. Then, they forgot to turn it back on after the procedure. By the time we got the doctor to change the orders, it was again too late to order food.

This morning I had been without food for 36 hours and was pretty irritated about it. Pestered everyone until the residents arrived and mostly fixed things. I am NPO (which means I cannot take any food by mouth). But, as mentioned, can have pureed for the g-tube. My chart says NPO, but then says in the notes that I can do the puree. Nutritional services could not get past NPO so still resisted accepting a pureed food order. That finally got sorted out. I am suggesting that they put Puree in the main field and NPO in the notes (since no one seems to read the notes). I know better than to try to put food or drink in my mouth…I want to heal up so I can get out of this place.

I’m also connected to IV fluids, since I could not eat or drink yesterday. Waiting for those orders to change, too, so that I can walk around without having to drag the IV pump around behind me.

Today, my brother-in-law is bringing up all my mail (might have to make 2 trips) as well as the electrolarynx. I’m ready to start practicing with that. Tired of having to type out everything I want to say (and I never can get in everything I really want to say that way).

Throat Blog — And Another Procedure

The surgeon came by and looked at the results of the CT scan. While the right side leak is bigger, the left side leak goes closer to a major vein. So, tomorrow she’s going to put me under and put in a drain. She’ll also check to see if there is anything she should do to close up the right side, some, but she’s really not too worried about that as long as I can keep it irrigated.

As far as getting out of here, that means that I’ve got at least “several days.” My experience has been that they never let me go on the weekend, so I expect to be here until at least Monday.

Good news on the talking front, though. After having to use my laptop and phone to type out what I want to say for 3 weeks, my electrolarynx will be delivered to my house, tomorrow. Hopefully, someone can rush it over here. I am eager to be able to start training on it so that I can communicate faster.

And, good news on the food front. The surgeon has OK’d moving to a pureed diet, which is basically what I do at home. Too late to get more robust food, tonight, so I’m subsisting on cream of rice, cream of tomato soup, vanilla pudding, and a carton of milk all shaken up so that it is thin enough to go into the G-tube. Only 540 calories, though. I’ve got my eye on the pot roast for lunch tomorrow with green beans and squash. Ok, now I’ve made myself drool…gotta go clean up.