That isn’t actually entirely true, but this post is about my lungs…in as far as my lungs go, it is very true. I got the CT results from this week’s scan, today, and the news is very good. 8 months ago I had 9 or 10 nodules, all 5-15 mm and growing. As of this week, there are only 6 detectable nodules, and 5 of the remaining have significantly reduced in size:
13 mm -> 3 mm
14 mm -> 5 mm
14 mm –> 5 mm
15 mm –> 5 mm
5 mm –> 1 mm
The one remaining has gone from 10 x 10 mm to 16 x 13 mm. Still very small and not growing fast (from what I’ve read, unchecked cancer nodules like this will double in size every 3 months).
So, even though none of these nodules ever affected my breathing, I am breathing much easier, knowing that the chemo drug I am on is working.
Now, if I can just get my throat situation settled, I can look forward to 100% easy breathing.
After not eating (even by nose) for nearly 3 days last week, then only getting food-by-nose for a couple of days, I expected my weight to be down when I got out of the hospital. My baseline weight from the end of 2018 was 145 lbs (which I was trying to add to). Going into the hospital, I’d drifted to 143, as I’d not been able to eat very well for a couple of weeks (and probably a bit dehydrated). (My app tells me that on 2/6/2011, I weighed 183 lbs.)
Once they told me I could eat, last Saturday, I started piling it in. The combination of no food for a week, plus the effect of the IV steroids amped my hunger. I started tracking calorie intake, too, so I’d know if I was getting enough to eat. And, as soon as I got home, I started weighing every morning (at home I can do this straight out of the shower and not worry about the weight of clothes…plus at a consistent time of day). Below are my results.
6 AM Weight
Now, I recognize that calorie apps aren’t perfect (I’m using MyFitnessPal, though, which is very good). And, not all scales are great at consistency (but I’m using a pretty expensive Polar Balance scale, which has always been very consistent). So that leaves four possibilities (well, four that come to my mind):
The steroids have amped up my metabolism and I really am burning up those calories.
I’m becoming progressively more and more dehydrated.
Some combination of 1 and 2.
For #1, that would not be a normal response. Usually, your hunger amps up (as mine has) and you gain weight while on steroids, not lose. I was actually looking forward to the weight gain.
As to dehydration possibilities…well, it is possible that I’m a bit low on hydration, but not critically so. Blood pressure is OK. No dry mouth (not a reliable indicator, I know). Peeing often enough, and not too darkly (TMI?). No headache or fatigue…
So, I’m left with #4. Today I am a magic man. I suspect that will fade.
Ok, first box of supplies arrived. Just need to have my mediport unplugged. I think there is another box coming, but I hope I can get it redirected to my office in the next couple of days. I have 3 or 4 days of supplies I can use from what is leftover in the hospital room.
If I don’t have to wait for the box, feet outside in 15 minutes. Otherwise… 🙁
I should clarify, I do still have most of my natural tubes. But, the NG tube is out. One step closer to freedom!
First pass by the intern this morning she told me “Well, actually, the SLP (swallow study expert) recommended no food by mouth because there was some aspiration.” My recollection was that she was going to consult with “the team” taking into account that I was good at self monitoring and come up with a recommendation. So, when I asked the Dr, Friday night, and he said “Eat” I assumed that they had already had that consult and agreed for me to proceed with caution. So, eat I did.
So, telling me not to eat, now, was a bit like locking the gullet after the omelet had already washed down. I do have some upper aspiration, but I don’t think anything is getting deep…I’m, able to cough it up. For one thing, the trach tube is in the way of any large stuff. And, I’ve had a little food squeeze out around it, as I’ve mentioned, but none of my caregivers seemed overly concerned.
Fast forward to 11 AM and I decided to do a brief walkabout. Was gone 10 minutes. Came back and the nurse said I’d just missed a call from the intern who was going to come up and remove the NG tube, so now it will have to wait until tomorrow. I was, um, irked. I’d left my phone # on the marker board on my bed with a note saying I’d be back by 11:30. How could they do this to me!!! Injustice!!! I am going to do something about this….oh, wait. About that time the intern walked in, snipped the cord tying the NG tube to my nose, and I pulled it out. Easy peasy.
So, I do still have a IV line plugged into my chest (that port is long-term, but the IV line will get taken off, tomorrow). And, of course, the trach tube is going to be in for at least a month. But, I’m ready to go home as soon as they deliver my suction vac. Which won’t be until tomorrow. Which is OK, I guess. I don’t think it is a terrible idea to be sure removing the NG tube doesn’t cause some other swallowing issue, but I suspect that it will only improve things (more room for the food to go down).
Air still blows pretty freely around the trach tube’s outside, and the intern agreed that it may be slower to close because of the steroids, but that it should eventually tighten up. I asked about using some Flex Tape® in the mean time. She advised that, while she couldn’t stop me she also wouldn’t recommend it. Based on the commercial, though, I think it could actually work.
I might not be smiling like Phil Swift when I tried to peel it off, later, though. So, for now I’ll deal with it using my bandana and finger pressure when I need to cough or talk.
Speaking of bandana…one of the respiratory techs commented on how stylish I was trying to look. I tie a red bandana just under the stoma and around the back of my neck, but not for style. Well, unless you consider not having snot running out of your neck and down the front of your shirt “stylish.” But, if I inadvertently start a fashion trend, I won’t push back too hard on it.
Well, maybe not that glorious, but food all the same. Last night the doctor allowed “full diet,” but it was after food service closed for the night, so I had to wait until this morning to actually eat. Started with breakfast burrito and breakfast potatoes from room service. That wasn’t enough, and I didn’t want to wait an hour for another tray, so I went down to the cafeteria and added a couple of pieces of French Toast and a sausage patty. Probably didn’t need all that sugar, but just this once, I opted for calories and taste over blood sugar control (and I don’t have a big blood sugar problem, just some insulin resistance which isn’t out of control…so a lapse now and then won’t send me into a sugar coma).
Had to be careful, and had to wash down every swallow with water to keep food out of my wind pipe (and a little did go in, but I was able to cough it back out before it got deep enough to be a problem). I call it a success. Not quite as functional as I was before having the trach tube put in, but functional enough that I think I can go 100% real food immediately and get the NG tube out before I go home (if the ENT team agrees).
The other very good reason to do all real food is that the formula they use for NG feeding keeps me running to the bathroom…had this same thing happen when I was on the PEG tube feeding, and living that way for 5 months added 3.8 wrinkle lines per eye. Driving to work was always a gamble (which, fortunately, I never lost, but a couple of times I was probably one long light away from disaster). Then, what fixed it, was switching to eating normally. That problem 100% went away 1 day after switching to real food. So, no formula if I can help it.
My only concern on intake is maintaining hydration. What I do aspirate more than anything else is thin liquids…i.e. water. If I take a big gulp, 95% goes down the right way, but that remaining 5% going down the wrong way, while not hugely dangerous, as water is fairly neutral, does make me cough. And cough. And maybe then I’ll cough once or twice more. Really disincentivizes me to stay hydrated, even knowing that hydration is important to the extreme.
So, today I am practicing different swallow modalities to try to find the best way to get water to my stomach with a minimal getting to the cough button. So far, looks like looking down while I swallow is the winning position, but I’ll keep experimenting. This seems to keep my trachea closed enough so that the 5% goes into my mouth instead of down my trachea. Then, I can either take another drink and re-swallow, or spit (suction) it out of my mouth.
What really needs to happen is that the bon-bon needs to go away. As mentioned before, it is pressing everything back 1/2 inch or so, and interfering with both swallowing (preventing the full swallow) and aspirating (allowing the remaing swallow to go down the wrong way). I keep pressing on the ENT team to think of something other than radical neck dissection with complete trachea removal. I just can’t imagine that the bon-bon can’t be eliminated or at least reduced short of that.
Steroids and antibiotics will reduce the immediate inflammation, but I don’t see how that will reduce the overall tissue mass. The bon-bon is hyperplastic, meaning that it exhibits rapid cell division/growth. So, I’ve floated that perhaps treating it like a tumor, with fluorouricil, might be effective. Fluorouricil cause cell death upon cell division. The trick (if something like this would work) would be to find a way to anger the cells enough to trigger the high rate of cell division. Maybe a low-dose blast of radiation? Or, some physical trauma (stick it with a needle and drain it) or inject some other irritant (but dangerous, I’d expect). Anyway, they are the doctors, I’m the patient. Well, impatient at times.
But, in any case, not to detract from the good news…food, glorious food! (Ok, I’ve changed my mind…after nearly a week without really eating, it was at least a little glorious.)
Well, the 4mm version of my trach tube is just too small. It is letting air into my mouth, but just as much comes out around the tube flange when I plug the tube hole. So, still not enough pressure to cough. I did a barium swallow study, and was borderline. On the one hand, still had aspiration all the way down to my tube. On the other hand, I have a very good cough reflex and am aware of this happening, so as long as I can cough a little stronger, I should be good to start trying to eat.
Plan now is to move me back up to a 6mm fenestrated, cuffless version. Fenesters are windows. Basically, this will have the same outer diameter as before, which did mostly block air from coming around the outside of the trach tube. But it has window slots cut into it that allows air to move into the natural airway. If this works…bring me pizza!
Actually, the swallow therapist (actually technically a speech language pathologist, but she does swallows, too), was ok with me carefully trying real food…after I discuss it with the ENT team and if they agree. But, this was before the new trach tube plan. I think after it goes in, almost certainly will be able to give food a chance.
Only thing I was disappointed in was that I’m definitely here until Monday (which means late Monday). I’m not entirely clear on why. Something about needing a swimming pool for the new wing (which they are building outside my hospital room, now…I can hear the cranes moving). I’m itching to get out of here, now.
At that point, I just got up. I normally get up around 6 AM, so tough to sleep in (but naps later are a distinct possibility).
Doctors came through around 6:30 AM. Plan for today:
Switch to green (not a fall risk) gown. (DONE!)
Switch to smaller and fenestrated (windowed) cannula so that I can breath/cough around it.
Assess swallowing. If positive, switch to normal eating.
Remove NG tube (depending on swallow results).
Switch to more hydration by mouth, either NG tube or swallow, so that I can untether from the IV pump and be free!!! (Well, free to roam the room and halls, anyway).
If all goes well, I could be looking at being discharged by Sunday, but they always seem to want to keep me here a day or so longer than I expect. Could be back to work by Monday. Well, work from the office, anyway. I’ve been doing a lot of work from the hospital, but there are a few physical and face-to-face tasks that I just can’t do from here. Email/server access only gets you so far.
Good news, this morning, from the biopsy results. The nodule (bon-bon) in my neck is not cancer. Not sure what made it swell up, but going to treat with steroids and antibiotics and watch.
Meanwhile, I’ve got another day or so at least with NG tube feeding. I think the plan still is to switch to a smaller inner cannula on my trach tube so that I can breath/cough/swallow around it and return to normal eating. Will need to be evaluated, first, but since I had relatively minor (as long as I could cough) aspiration issues, I’m pretty hopeful that that plan can carry through.
They did move me back off of the ICU floor. At 2 AM. Ugh. So, I got maybe 2 hours sleep last night. Don’t come to the hospital for a good rest, you won’t get it. I suspect I’ll do a little less work and a little (lot) more napping, today.
At last we were able to get the NG tube down into my stomach. It seems that the changes to my larynx pushed everything back a bit, so the tube was trying to go into my lungs, instead of my stomach. Finally, after twisting and turning, we found that if I looked down and to the left, the tube had a straight shot to my stomach, so there it went.
Now, I’m getting a very slow drip of something that looks like (but probably isn’t) chocolate milk. They want to start slow to be sure I tolerate it OK. I’m ready for them to crank it up to 11, or to at least make 2 faster.
They were about to move me back to the 6th floor (out of ICU) but then decided that since I had a new trach I’d add too much load to the floor…so stuck up here a bit longer. They did agree to unplug me from most of the monitors, so at least I can move around the room a bit better (just have to drag my feed bag and IV bag around wherever I go). I’m really ready to go to 6. The room is bigger and laid out better for an ambulatory patient. This room is not tiny, but is cramping my style, a bit. Plus, I have to stay in this ugly orange gown (orange means I’m a fall risk, but everyone up here has agreed to ignore that, since I’m not really a fall risk). Down on 6 I can switch to a blue gown (but actually, I just put on my street clothes).
Anyway, still waiting for biopsy results. I’m guessing I’ll be here for the weekend, but hoping they surprise me with an early parole.
But, no hamburger today. They tried to put in the NG (naso-gastric) feeding tube. First time, the nurse tried, but after getting past the painful back of my nose and just past my gag point, it both hung up and caused something to start blocking air through my trach tube…so we yanked it out.
Tried a second time with one of the Dr’s. I actually did most of the work, as I could feel when to push, could rest for a moment when I needed to, and could control the speed. Got everything past my nose, into my throat, past the gag reflex, but then the tubing just bunched up without pushing the tube any further. I think whatever is causing the tightness in my esophagus that contributes to the swallow issue is hanging up the end of the tube.
So, no blended hamburger (or whatever they put into the NG food bag) for me, tonight. It has now been about 40 hours since I have had any nutrition at all. I am beyond hungry. I could definitely use some calories. But, next attempt at NG tube will be by the ENT team tomorrow morning.
I’m still up in ICU, simply because there are no rooms down in the non-critical area. Other than the NG tube drama, I’ve been an easy patient for this floor. I get up and down on my own, something that most on this floor cannot do. I’ve never hit the call button. Don’t need bathroom help. Just need to get this feeding situation fixed and I’ll be good for the rest of my stay.