Throat Blog — Quick Pre-Op Update

Surgery tomorrow, expected to be at around 11:30 AM. This surgery will be simpler. So, why not this one to begin with? The cosmetic and functional results will be worse. Essentially (as far as I understand it), they will partially remove my left pectoral majoris, leaving most of the major blood vessels connected. They will then rotate this up and attach it under my neck. Since less plumbing to deal with, it should not have the blood flow issues the first flap has had. No leeches. Might even get to skip going back to ICU for recovery, but that will depend on a lot of unknowns.

Cosmetic and functional issues after will include some or all of:

  • Simple cosmetics.
  • Upper left side weakness (since there will be no upper left pectoral muscle)
  • Unexpected movement. Since the brain will think those nerves are still connected into my chest, if I do something that would normally cause my left pec to flex, my neck could move, instead. They’ll probably try to sever nerves to minimize this.

Accessory issues can include:

  • Need for turtlenecks to come back into style.
  • Increased need for bandana collection.

Wish they could just wheel me in, now, and get it going. 16 hours of dwelling on this can’t be good.

Throat Blog — What’s the Big Flap?

The surgeon that did the graft from my thigh to my neck came in and used a scope to more closely examine how the graft (they call the result a “flap”) is doing. And, it ain’t doing. They are going to have to redo that surgery using a new donor site. This time, to avoid the small vein complications, they plan is to use left chest pectoral area. Much bigger veins and she said it would be a simpler surgery, but have a worse cosmetic result. When I smile, it will flex that pec. Or, if I flex that pec, it will make my neck twitch. Something like that. Well, plus, your chest is exposed more often than your upper thigh (well, mine, at least). Not that often, though. Could be some other nerve issues (left shoulder weakness) and some risks just from having surgery near the lungs. But, manageable and minor compared to trying the other thigh, which would have similar small-vein problems.

Right now, the existing flap is dying. She wants to get in within 72 hours to minimize having too much dead tissue to deal with. I asked whether I should expect to have as bad of a recovery week as I had last week, and she really doesn’t think so, since all those issues (as well as this flap failure) she believes stems from the issues with the veins, which won’t be present with pec area tissue. No leeching expected this go-round.

Ironically, today I feel great. Physical therapy kept fussing at me for walking too fast (they had to pull along my IV pole and a just-in-case wheelchair). I feel like I could walk the halls for a couple of hours. It would do me good, but they won’t let me walk by myself, yet, so that option is out. On the other hand, I also only got 3 hours of sleep last night and could use a nap. Or could practice my guitar. Decisions, decisions.

Likely my original 3-week incarceration estimate will be extended a bit more. I would not be surprised to be here another 3 weeks from now. Not surprised, but not happy, either.

Throat Blog — Graduation Day

Yesterday morning at 6AM I was told that they would be moving me out of intensive care and to a regular room. Hoorah! So, when did that happen? Technically, it was yesterday. 11:45 PM. So, by the time I got settled in and could get to sleep, was close to 3AM, today. But, I did sleep pretty well for 3 hours, then rounds started and no way to sleep through all that.

Another thought emerging from the fuzziness that might have been last week. I remember thinking about what I might write about the experience and spending an inordinate amount of time considering when it would be best to use the word “miserable” and when it would be best to use the word “pitiful.” Yeah, great times.

I could get up and walk around, now, if they would let me. I am weak, but steady, and know to be careful. But, stuck in the bed with the alarm on, so I’ll behave. I’m here at least until sometime next week. The graft is still OK, but only OK. If it teeters on the side of not ok, then I might have another OR visit, but they don’t think it would be major. The two issues are: 1) total circulation (that would be more on the major side, but they are more optimistic on this) and 2) fistula. Right now, a lot of my saliva is flowing down into the wound instead of into my mouth/throat. This should heal closed, but if it does not it will cause damage around the carotid. They are irrigating and watching this closest.

I have no idea what today’s agenda is. Probably some physical therapy (PT), some occupational therapy (OT) and hopefully the speech therapist can come by so that I can get started on getting an electrolarynx. The sooner the better, as far as I’m concerned, as I’m still having to type out everything I need to say. Long term, I’ll probably use a speech method called esophageal speech with prosthesis. (The burp talking I mentioned in past posts.). But that will have to wait. And I want to talk now!

Throat Blog — Post-Op Update

There is no way for me to make this any kind of coherent post, as I have a real lack of coherent memories over the past two weeks. So, quick snippets of things I remember happening, or at least that I think I remember happening…whether they really happened or not, I don’t know.

First, something I do know for sure. I had surgery on Monday, May 20. Two surgeons over 10 hours. First surgeon removed a large mass from my neck that consisted of live tumor, dead tumor, infected tumor, and some tissue around the margin. Lost: complete larynx. Airway to my mouth. And, well, tumor. Second surgeon took a big chunk of muscle and skin off of the top of my right thigh and grafted it into the big chunk of nothing that had been my throat. This was the long part of the surgery. The tissue had to be reconnected to enough of a vascular network to live. Seems arteries are easy, but veins are not. Especially small veins. Apparently I have tiny veins.

Not too bad right after surgery. But, the grafted tissue in my neck could not drain quickly enough to keep good blood flow. Without good blood flow, the tissue dies. Then, have to try again with tissue from another limb. You’ve only got so many limbs, so that cannot go on forever. For the next few days I was treated to heavy blood thinners and leeches. Yes, I did say leeches. For a few days they kept up to 3 leeches per hour connected to my neck. I had to have 24/7 attendance by at least one, usually two nurses.

Now it get fuzzier. Between the blood thinners and the leeching, I was losing blood faster than I could keep up. Flashes of being stood up next to my bedside, blood rolling down. Knowing that I was passing out, but not being able to communicate it to anyone. A larynx is useful for that, but mine was gone. Fading in and being back in bed with 10 medical staff around me asking if I could hear them. They’d called the crash team. Not code…heart hadn’t stopped, but my blood pressure had gone to 50/30. I remember that happening 4 or 5 times. They tell me it was closer to 15-20 times over 3 days.

The feeling from my side was of not being able to get enough air. I could breath. But still I felt like I was suffocating. Everything greying down to a tunnel. Then, the crowd around the bed.

So, now in addition to the leeching, which had to continue, the started pumping in units of blood. Red Blood Cell count was very low But, that isn’t the whole story. In addition to RBC, blood carries plasma…liquid that carries the RBC, nutrients, and other stuff you need to stay upright. Even with my RBC back in safe zones, I couldn’t stand up…total volume was low. But, you can’t just shove in a bunch of saline. You have to keep critical chemicals in balance. Calcium. Sodium. Potassium. Others. Mine were low across the board, so spent days, now, being leeched, thinned, pumped up with RBC, saline, calcium, sodium, potassium, glucose, lactose, all trying to balance keeping my blood volume up, keeping my chemistry within a good zone, getting enough blood volume so that when I stood up, there was enough blood pressure to keep everything going.

Most of the time flat on my back in bed. I could usually reach the TV remote, and kept it going on something all the time, even when I wasn’t really aware. With everything happening all the time, I didn’t sleep for more than a few minutes at a time for over a week. Every time I would doze off, it would feel to me like everything was dropping too fast, and I’d startle myself back to awareness. Even with the painkillers, I was not comfortably numb.

Slowly, though, things are getting better. Today, I am still in the SICU, but waiting for a regular ward room. No more leeches for the past couple of days. I took myself off of all painkillers yesterday (other than Tylenol). Have been taking either hydrocodone or oxycodone every 6 hours for a week. Most of my pain has been in the back of my neck. The two tendons that you can feel running up the back of your neck for me felt stretched to the point of snapping. I also had 4 drains going into my neck. When they drained the right side it would do something to that tendon that would put me in level 8 pain for hours with the meds. I’m down to just the drains on the left side (which also happens to be the side with the worst circulation).

Anyway, was talking about pain and taking narcotics for a week. Cutting it off is causing me to have some jitters…restless legs, twitches, sleeplessness. But, I can even tell now that it is better. I’m taking some antianxiety meds to help, and will start to taper those off, too. Don’t want to go home with any bad habits. Well, any bad habits I didn’t have before all this.

Today not much pain…certainly not enough to need the dope. I’ve been out of bed all day, and stand up/sit down a couple of times an hour. Walked the halls (supervised) for a few minutes. Ready to get to the next steps.

Still have to watch the neck. I could need more surgery if the graft doesn’t finish healing in. I need to build my strength back up. Mostly right now I want to get something that I can use to communicate with faster. I’ve been using my phone to swipe messages to nurses, doctors, visitors. But that is so slow. I know speech therapy should be coming to see me tomorrow. Maybe I can get something going quickly.

So, that is it for now. Like I said, coherence for this post wasn’t even an option…I usually reread/edit before posting but I’m going to let this one go out unedited. Just about ready to do another stand up and might go ahead and sit back down in bed.

POSTSCRIPT: After writing and posting this, I looked back at my blog and saw the other three post-op entries I’d written. I have absolutely no memory of writing those. Nor of the 2nd surgery I talked about. Probably just as well that most memories of last week were wiped.

Throat Blog — Not low-maintenance today

I am usually not very much of a work load, even in ICU. Not today, though. Today I kept two nurses running full time for 12 hours. Putting on leeches, taking off leeches, Continuously cleaning up blood, suctioning blood…I was a mess all day long.I know they must have been exhausted at the end of their shift, because I’m pretty tired and all I did was mostly sit up in a chair all day.

Got 2 units of blood to replace the blood the leeches took (and that the blood thinner took). Thought I could get off the heavier pain meds, but by the time I got just Tylenol, I’d been waiting too long and had to go back to Vicodin. Will try to go back to just Tylenol tonight now that the pain (mostly back of my neck pain) has been knocked down.

Not much else to report. Just waiting for the blood flow in my neck to improve enough to stop the leeching.

Throat Blog — Tonight I’m Gonna Party Like its 1699

Went back to the OR, today, for what ended up being a 4 hour followup procedure. Had great blood flow into both sides of my new neck. But, only the right side had adequate outflow. Ir seems that I have very small veins. So, they tried to improve flow the new-fangled way, and were partially successful. But, not successful enough. So, read the title of this post. The old-fashioned way is a good leaching. That’s right, every hour I get a leach put on my neck to drain out the excess blood. Will do this for a couple of days until the area grows its own vein system adequate to handle the volume.

Meanwhile, I’ve got IVs and monitors on both hands, making it nearly impossible to type. So, keeping this short and probably updates not often for a few days. Adding a few extra days in ICU, but I get a full=time exclusive nurse while the leaching is going on.

That is it for a while. Maybe again tomorrow night.

Throat Blog — If You Are Reading This…

Then, I survived surgery. Oh, and thank you for reading this.

By all account’s I’ve heard, surgery went well. Tumor came out cleanly and was a mix of live tumor, dead tumor, and infected tumor. Surgeon is confident that no followup radiation should be needed, but PET scan at the end of the month should verify that.

My last memory before surgery was in the OR, they were about to give me something to make me a little sleepy. It worked!. My first memory after surgery was about 10 hours later and also in the OR, with some surprise that I was apparently awake so quickly. That almost always happens…I come up fast. But, the next hour was a bit spotty. I next remember being in my ICU room with no memory of walking there. Took them about 3 hours to get me settled in, at which time they let my sister come up (at about 8:30 pm). She and my brother-in-law brought me this morning, so had been up since the wee hours They stayed for another couple of hours, then headed home for lunch (and I suspect a nap).

I have a painkiller button, but it doesn’t seem to touch the pain I am having (which is not horrendous but is continuous). I really haven’t been able to even feel a rush after hitting the button, which is unusual. It also hurts a bit when saline is pushed… I have two lines; left side and right side, and it only hurts when they push on the right side. The last time they pushed saline, I got a big rush (I’d been hitting the pain pump every 10 minutes for about an hour) followed by dizziness and pain relief. I think something issss wrong with the IV line and I got a big dump of the painkiller all at once when the nurse pushed the saline. So, no more anything into the IV until this is fixed.

My blood sugar level came back very high (>250) which is so strange after not eating for so long, I had them run it again, and it came back that high a 2nd time. could be due to the steroids. I don’t have any nutrition in my drip. They gave me some IV insulin but haven’t rechecked, yet (it was 10 hours ago). The insulin is a direct injection, not through the IV, so should not be affected by whatever issue the IV is having.

While I’ve not really slept since I got out of surgery, I’ve not really been fully awake most of the time, either. Spent quite a while with my eyes closed, listening to whatever was running on the TV . And, of course I am almost never alone …. a nurse, respiratory tech, doctor, or other is nearly always in the room, too. At least I’m spared trips to the bathroom. Catheter takes care of #1, and apparently #2 was taken care of around 3:30 AM Monday (while I was still in the OR). Just as well that I was knocked out for that.

I’ll be hanging here in ICU until at least Friday at which point I’ll be moved to a private room. Already looking forward to the move. More room, I’ll probably not be classified as a fall risk, so can get up/down on my own, plus I’ll be able to get my laptop out, which is much easier to use to write these posts. Until then, I’ll make do with what I’ve got.

Throat Blog — The Musical

My larynx comes out
Tomorrow
Bet your bottom dollar
That tomorrow
It’ll be gone!

Just thinkin’ about
Tomorrow
A little more breathing through my mouth
Tomorrow
Til there’s none!

.

.

.

Ok, that is as far as I’m going with that one. Surgery starts tomorrow at 7 AM. Expected to last 12 hours. I’ll be napping, hopefully that entire time.

Throat Blog — Up All Night

One good thing about blending “real” food to put into the g-tube is that I get a broad range of macronutrients that formula does not provide. It also is much easier on my digestive system. One bad thing is that, in order for the meal to be thin enough to drip from the gravity bag, I have to put in a lot of water. A lot of water just a couple of hours before bed time is a formula for having to get up every hour to pee.

My throat/neck has been hurting enough this past week that most nights I also add a pain pill to my final watery nightcap of the evening. This helps me get to sleep, but isn’t so strong that it keeps me from waking up when I need to. Problem is, it wears off around 2 am and tends to leave me very restless for a while. So, about time I no longer need to get up every hour to pee, I can’t go back to sleep because of the restlessness. I’ve been just giving in and reading for an hour or so, then going back to sleep.

But, that means I’m getting only 2-3 quality hours of sleep a night. That is really catching up with me. I get very sleepy in the afternoons at work. Not conducive to working…but we are preparing to move offices, so I can get up and start moving around, packing things for a bit to stay awake. I just can’t do that for long, though, as I get pretty tired pretty quickly.

The first few days in the hospital should be free of some of these issues. For one thing, I’m sure I’ll be back on formula, so the excess water situation won’t exist. And, even if it did exist, I’ll be sporting a catheter for at least a few days, so I won’t have to wake up to go even when I need to.

Packing for my incarceration is about done. Packing my office is about done. I should leave some more tasks undone so I have something constructive to do this weekend. The only fretting I should be doing is on the guitar.

Throat Blog — Surgery is Scheduled

It is with mixed feelings I got the news, today, that the surgery is scheduled for next Monday (May 20) at UTSW Clements Hospital. On the one hand, I am glad to have a definite date. But, on the other hand, this is a surgery I really wish I didn’t have to have. Wish in one hand, spit in the other…see which one fills fastest. And, I spit a lot, lately since I can’t swallow. So, it is what it is.

Also got the radiologist report form the neck CT taken last week. The tumor is continuing to get bigger and is now destroying adjascent cartilages. Also it is very close to the tracheostomy tube, now, so really needs to come out before it starts to interfere with the only airway I’ve got.

Good news from that report is that the nodule in my upper left lung has not gotten any bigger. There is still some question as to whether this is cancer or just something I’ve inhaled that my body is dealing with. The surgeon said he’d like to get a biopsy of it. The problem has been that these nodules are so small, it is difficult to get any material from them without risking pneumothorax (collapsed lung). Being so small, they would tend to move out of the way of the needle.

This week, I’ll need to finish all my pre-surgical prepping. I have a bag packed for the hospital, but need to unpack/repack it to be sure I didn’t forget anything. I also need to make sure I pack chargers for my phone and tablet. The first few days I’ll be in ICU, so probably have to wait until I get to a regular room to get most of my stuff (packed bag, guitar).

Since the hospital stay isn’t expected to be but a week or so, not much needs to be done to prep the house. The cat’s food, water, and litter box all run for a week or more (water and litter box need attention first), so he’ll only need one visit for essentials while I’m gone. But, he might get a few more visits just to be petted…hopefully he’ll not be as stressed when I get back as he was last time I was gone for 10 days.

Tomorrow I have my consult with the speech/swallow therapist first thing in the morning. That is supposed to last about an hour and prep me for what will happen during recovery.

Work-wise, our office is being relocated during my absence. So, this week I need to finish packing it up so that it can be put in the new space.

I suspect the rest of my time will be spent trying to find things to do to take up the rest of my time. Well, things to do besides fretting.