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.
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.
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.
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.
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.
Had both of my pre-surgery consults with the surgeons that will be working on my neck. First is the one who will take out the tumor and larynx. He said that his part will last about 2 hours. Next is the surgeon who will be reconstructing my neck. To do this, she will remove tissue (skin, fat, muscle) from my upper right thigh, upper left thigh, or forearm (in order of preference) to use to rebuild my neck. That part will take up to 10 hours. A lot easier to yank stuff out than to put stuff in and make sure the plumbing is all connected well so that it works.
Both surgeons agreed that I will likely be in the hospital for 7-10 days, then at-home convalescence for another week or two before I’ll feel like resuming “normal” activities. Much less than the interweb searches led me to believe, but they both said that their normal patient is older, in much worse shape, and with a history of smoking or heavy drinking that all contribute to a longer recovery time.
So, now I’m just waiting for the surgery scheduling department to call to tell me when my incarceration will begin. Could be this week, but more likely the next week. I have one more consult pending with the swallow/speech therapist to go over my recovery plan. That happens on Tuesday. Meanwhile, just waiting.
Well, I had a hard time selecting a title for this post. In addition to what I ended up choosing, choices were:
Return of the Tumor
The Tumor Menace
Attack of the Tumor
Revenge of the Tumor
The Tumor Awakens
The Last Tumor
The Rise of the Tumor
The only Star Wars title reference I could not fit in was “A New Hope.” I suppose, “A New Tumor” might have worked…but this is the same old tumor.
Got the official news while waiting for my flight back from San Diego that the mass in my neck is a return of the cancerous tumor, and not the fanciful bon bon we’d thought it might be. Looking at my old CT scan from last August, I suspect that the tumor never actually went away…it just got a lot smaller. What everyone thought was post-radiation necrosis and cyst, was really the tumor lurking and ready to pounce. In December, it pounced, growing large enough to start affecting my swallowing.
Now, it is as big or bigger than it originally was. This time around, it seems my options are limited to surgery, which will involve the complete removal of my larynx. No more breathing through my mouth or nose. I have two pre-surgical appointments this coming week (one with the primary surgeon and one with a reconstructive surgeon), then I expect surgery to be scheduled for the following week.
Functionally, my throat has degraded quite a bit in the last couple of weeks. Seems I had the g-tube put in just in time, as just a week later I got to where I was completely unable to swallow without major aspiration risks. Well, those risks are mitigated by having almost no airway, but still too much to risk. So, I am on 100% g-tube feeding. I can only inhale through my trach tube. If I cap it, I can just barely pull in some air, but not enough to call it breathing. I can exhale with a lot of force, but it isn’t comfortable, so I’m mainly leaving the trach tube open.
In San Diego I was slated to give 3 or 4 one- to two-hour training sessions on using radio scanners at remote locations for logging and monitoring. In attendance were multiple federal, state, and local agencies…primarily public safety and Homeland Security. I took with me one of my primary beta testers, Joe, so that he could fill in if/when my voice gave out, and I am really glad that I did that.
The first session, I did nearly 100% of the talking. Oh, and I can talk by capping the t-tube either with my finger or using a 1-way valve (lets me breath in normally but closes when I exhale so that air goes up to my mouth…I can squeeze out words by tightening my throat). At the end of that session, I was hurting a bit. That night I was coughing up my normal mucus but found that it had little threads of blood (not major hemorrhage, just noticeable threads). I also had to resort to taking a 10mg Vicodin to get to sleep. The agent who organized the conference had attended and asked afterword if I had overdone it. I replied without hesitation “Absolutely.” Went back to my hotel room to “work.” Actually slept for 3 hours.
Day 2 I spoke less, but still quite a bit. I just can’t seem to shut up. Also, while I had a PowerPoint outline of the material, a lot was in my head and not on paper. Joe covered it all quite well, but I still felt the need to interject thoughts now and then. I would have probably talked more, but it did get to where I just couldn’t get any sound out, so relented. As this presentation was in the afternoon, I had gotten my nap in in the morning. But, by the time I got back to the room, got my nutrition, and settled in, I was ready to make an early night of it.
Day 3 we had 2 morning sessions scheduled. And, my boss (America Division President) had also flown in to check out the event. So, I pretty much did the intro, but then turned 90% over to Joe. This ended up being more of the hard-core technical users, so we had quite a few suggestions coming in. Gave my work email address to the main interrogators so that they could organize their suggestions and send by email. Just no way for me to properly consider and respond in the time frame we had (even with a voice). My boss was quite impressed with the exposure we got from this event…even though it was only 30-50 agents/officers/techs, these guys are hugely influential in terms of what decisions multiple federal, state, and local agencies spend their money on for communications gear. Despite the physical discomfort/drain, I am very glad that I was able to direct and participate in the event.
All week though, I had awaited word on the biopsy results (really already knowing unofficially what they would be). Got the call from my surgeon (on his day off) while I was in the airport waiting area near my departure gate. Immediately sent emails to cancel my trip to Pennsylvania next week. Also cancelled my appointments at MD Anderson. The MD Anderson trip was predicated on the mass being a non-cancerous post-radiation cyst. Being cancer, that premise was blown. And, surgery is the only option.
ISo, I’m looking ahead to several (3-4) weeks in the hospital followed by a 1-2 month home convalescence (holy cow, I spelled that correctly first try). I’ve had my hospital bag packed for a couple of weeks, knowing that this day was coming. Also got my quiet guitar, some study material, and of course my Android Slate so I can read, surf, and whatnot without having to pull out my laptop (which I’ll also take).
Above, I said “looking ahead” because I’m definitely not looking forward to this. At the same time, I want it done as soon as possible. The longer it is left to itself, the bigger it gets (and the bigger the complications become. If they could schedule it tomorrow, I’d go.
My June trip to Nashville will also be a victim of the tumor. Already paid for myself and my guitar buddy to attend. I’ll get part of that back, but I’d much rather be there.
Ok, enough of this, for now. I’ll leave you with a hearty “May the 4th be with you.” Or, maybe my favorite Yoda-ish misquote:
I ate Sunday evening (mostly a 10-oz pork loin, sous vide with marinating spices). Then, no food until they let me eat, today, which was around 10 AM.
At 5 AM they came in and took some blood for labs. They came back at 7 AM and said they needed to recheck my glucose…the labs came back with 55. So, they did a finger stick so that they could get a good read. After all, I was coherent, actually doing some work emails, not sweating. I was a little shaky, but not terribly so. The finger stick came back…47. Ooh, I don’t know what is scarier. That my blood sugar got down to 47 or that it didn’t affect me mentally. Maybe I’m always behaving like my blood sugar is that low, so I just didn’t notice.
Anyway, they gave me a fast bag of glucose (since I still couldn’t eat or drink). Next check, blood sugar was 185. Well, we don’t want it that high all the time, but they said that was pretty normal after getting that much sugar water into my jugular that fast.
Around 8 AM they wheeled me down to X-Ray so that they could confirm that my g-tube was working as it should. It was. So, they gave the go-ahead for food and drink by mouth (or by g-tube). I ordered oatmeal and a breakfast sandwich. Also Orange Juice. I figured if it made me cough too much, I could always pour it into the g-tube.
After that, I was just hanging around waiting for the social worker (arranges for home supplies…which I don’t need) and dietician to come by, then I was free to go. To work…
It feels a bit like I was stabbed in the gut. Oh, wait. I was stabbed in the gut. Took 1mg of morphine for it, yesterday, but nothing else. I’ll take some Tylenol, tonight. Really, it only hurts when I cough. Or get up. Or walk. Or sit down… Well, I know that will go away in a couple of days. It is already much better than yesterday.
Still waiting for the appointment to do the 2nd biopsy. I bugged 2 of my doctors by email and every doctor that came into my room, today (3 or 4) to try to get it done today, while I was already there. Well, didn’t happen. So, more waiting. Not sure what is worse, the not knowing (but pretty sure) I’m experiencing now, or the hope (false though it was) I had for a couple of weeks after the first biopsy. I’ll have to try not to think on that some more (as such thinking is usually at 1 or 2 AM).
Still planning the multiple upcoming trips (San Diego, Pennsylvania, Houston, Nashville) but planning for contingencies, as well. I’ve also got a suitcase packed and in the car ready for an extended hospital stay. Can’t be too prepared.
I found out when I had my followup with my ENT surgeon that the biopsy they did at that time was just from tissue in my throat, not from the mass in my neck. I was rather gobsmacked when I heard that, as the cancer was never in my throat…it was in a tumor in my neck. So, I’ve had a few weeks of false relief. Well, I guess the relief at that time was real, but it was based on a false premise.
When we looked in my throat during that appointment, you could basically see the tumor (because I’m convinced even without the 2nd biopsy that it is a recurrence of the original tumor) pushing into my trachia and basically closing it. Very little airway left. On the plus side, it actually makes my voice a bit louder, as that entire squished together area vibrates with the air pushing through. But, plenty of downside, too.
For one, it is progressively making it more and more difficult to eat and nearly impossible to drink. I’ve been able to keep up with calories (at least 1800/day) but my hydration has suffered. Suffered enough that I suggested getting a G-tube (PEG…tube into my stomach for hydration and nutrition) placed, again. Even though I hated having it in, before, I much prefer it to dehydration and starvation. The lesser of two evils.
Today, I got the tube put in. Simple enough that they don’t even put you under. But they do give you fentanyl and Versed and keep you overnight so that they can check to be sure everything sealed up good. Tomorrow they’ll inject some dye into the tube and watch on a fluoroscope to be sure everything goes where it should be going. Until then, no food or drink by mouth (or tube). I’m getting IV hydration…and probably starting to get hangry. I could use a good burger right about now.
Next, I’ll be getting the Ultrasound FNA biopsy. Hopefully this week, but no one has called to schedule it, yet. I had hoped that I could get it done while I’m here, but apparently insurance would be an issue…it is approved as an outpatient procedure, but since I’ve been admitted to the hospital, it would probably have to be done as an inpatient procedure, which insurance hasn’t approved.
Probably a moot test, though. It looks like a duck, quacks like a duck, and swims like a duck. The biopsy will just confirm that it really is a duck. Shortly after that positive (well, in the medical sense, not the emotional sense of the word) result, I will likely be scheduled for a full laryngectomy. By shortly, I mean it could happen as early as later this week. I’ve got mixed feelings on that. I would really like to be able to do my training event in San Diego next week. On the other hand…this needs to be taken out of my neck ASAP. The bigger it gets, the more problems it causes, and, I would imagine, the more surgical complexity it would add.
Meanwhile, the G-tube hurts when I cough, but otherwise looks OK. And, they’ve got morphine to take the edge off the cough pain. Since I can’t drink or eat, coughing is greatly reduced. I do plan to continue to eat as much as I can by mouth for as long as I can, then supplement with tube feeding if necessary.
I titled this post “Up in the Air” but really probably sinking pretty low pretty quickly. I’ll try to keep my head (and trach tube) above water and carry on as best I can for as long as I can.