On Wednesday the alarm goes off at 4am so that I can take a final antiseptic shower, put on clean clothes, and throw the last few items into bags for my hospital stay. Ruby comes over at 4:45am and we drive up to Cedars-Sinai. There is no traffic at this early hour and we get there early. Ruby and I get me admitted and registered for surgery and then we say our goodbyes since I have to go to the 8th floor. I undergo a mandibulectomy to remove cancer in the gums and jawbone. They removed the cancerous jawbone and teeth and replaced it with re-shaped bone from the fibula (lower leg). They also removed my lymph nodes in the area to stay one step ahead of the cancer. Some inplant teeth were put in but others will come later. It was a twelve hour surgery with three different surgeons involved. I wake up in the Intensive Care Unit (ICU) with a tangle of tubes and wires and hoses running everywhere and a boot on my left lower leg. I'm very happy that they did not use a cast. I notice that the room is warm and really the only thing I ask for on Wednesday night is to lower the temperature. Unfortunately they cannot just lower a room temperature and I see how this early recovery is going to play out.
I sleep surprisingly well on Wednesday night (seeing that I've already been asleep for twelve hours, I have lines and junk running everywhere, and the room is too warm). When I wake up and decide to stay awake, I take stock of everything attached to me:
I notice that every bodypart is sore with a lot of swelling in the neck and throat areas, as expected. But I have no pain. And it will become a constant point of discussion that this guy hasn't used or requested any pain medicine. I cannot talk because of the swelling and trachea tube, but I have to keep writing down that I played ice hockey for twenty years and there isn't anything they (ethically) can do to hurt me.
ICU is chaos with everyone running around doing their health checks of and the surgeons checking things out. I maybe drop off to sleep for a few minutes when somebody wants to give me an antibiotic or take some blood or check a wound.
On Thursday I wake up and there is phlegm or mucous buidling up in the lungs This is not atypical when they insert a trachea tube. But this along with the warm room temperatures are my biggest discomforts in ICU. I end up coughing and sweating my way through two days of ICU and am happy when they have found a regular recovery room for me on Saturday morning.
Before transport on Saturday morning I charm the nurses into letting me sit upright in a chair for an hour or so. I can certainly be sitting in bed, but you don't get to dangle and swing your legs. I had floated this idea past the doctors and they said to do it. At first the nurses want to carry me off the bed and into the chair. But I reject that idea and say I can swing off the bed, stand on my good leg, and then rotate ninety degrees, and sit into the chair. They go for the idea and trust me (because they've already seen my almost smile and my attitude through this nasty experience). They bring a lot of help, but I excute the idea perfectly. Gaining more of their trust. Granted, uneknownst to them, I take the stand and perform the maneuver as a chance to put some weight on my bad leg and I don't feel a thing. No pain, no lack of ankle mobility, nothing. But now the nurses see I'm strong and can do the things that I say I can do. This gets relayed to the regular nurses from the ICU nurses, so I get to get in and out of the bed and chairs, more or less, on my own. And when I leave ICU, one of the nurses says to me "Everybody loves you 'cuz you're always smiling and a recovery-directed patient".
Saturday is a difficult day though I'm in a regular recovery room. The phlegm and mucous and room temperature are still problems. The nurses see my situation when I've sweated through two pillows in just a few hours. This is a world class cancer medical center, but you can't control your room temperatures?
Sunday is a better day. The phlegm and mucous problem seems to be getting better, the room temperature is cooler, and I sit in a chair for almost eight hours. For the eight hours I watch the ice hockey playoff game, watch the golf tournament, and read the news on my laptop. And I get to have a couple of stand-up breaks where I ask to get out of the chair and stand for a minute and stretch to reach the sky. I only do these when accompanied, of course, because I don't want to lose the trust that I've built up.
Monday is an up and down day. I sit in the chair for a long time today and work along on some things and watch the ice hockey playoff game. (This is good!) But the phlegm and mucous near the trachea tube is troublemsome. (This is bad.) The surgical team comes and reduces the size of the trachea tube to the smallest level. (This is good because the next step is complete removal of the trachea tube.) But physical therapy does not show up to get me out and walking. (This is bad.)
Though I am only receiving antibiotics and no pain medicine, I've had some bad weird dreams lately. Tonight I have the dream that I'm one of the starring figures in a television or extended series. I'm a key player, but I think my part is boring and doesn't change much from episode to episode. I threaten to leave my contract or go off script and say what I want during filming, but each is met with reaons why I shouldn't do it. I can't wait to get out of my contract. (And this dream has some analogy to real life in that I can't wait to get out of the boring hospital. But most of these weird dreams were not so relatable.)
On Tuesday things start out much better. The physical therapy guy, Ivan, is a nice guy and he lets me do things as tests to check out my dizziness, balance, stability, and endurance. We walk way around the nurses' station and the nurses are surprised to see me walking past. So I have a good "long" walk to get the day started. Throughout the day I get in three accompanied walks, three separate instances of sitting in the chair, a visit from an occupational therapist, a visit from a swallow therapist, and miscellaneous other visits from medical personnel. With the swallow therapist, who knew this existed, I get some apple sauce and it tastes good. But they only let me have a few spoonfulls and I pretend that I'm going to prevent them from getting to the door with that full container of applesauce. (They had me try applesauce in preparation of removing the trachea tube entirely and am I so swelled up that I cannot swallow.) Late in the day I get that last accompanied walk in as I'm watching the ice hockey playoffs and the game is between periods. I should sleep well tonight.
I have an incredible four hours of deep sleep on Tuesday night into Wednesday morning. I also have another strange weird dream that seems to last for the entire time (though I know that it doesn't). In the dream, I'm floating through various solar systems. It seems that I can float between galaxies and universes. I get an understanding at the interesction galaxies or universes, there could be parallel lives for a star or person. When I wake up from the dream, I write a note to myself about the dream to go look up the sizes of the various space components and check out the parallel universe idea. It was a bizzare dream but on Wednesday I do look up the component sizes and think a bit about the way that parallel universes could be explained.
Early on Wednesday, as I'm still contemplating universes, the doctors come in and see that I am doing great after the four hours of deep sleep. They put a removable cover on my trachea tube and my life is instantly much better. They show me how to remove the cover in case I have trouble breathing through my nose and mouth or panic or get clogged up with mucous. But the entire day is so much better without the trachea tube cover and hose and I can swallow and cough (when needed) and I'm going to push the doctors to remove the trachea tube entirely. I also get two of my three incision drain tubes/bulbs removed. I'm rapidly losing all of my lines, tubes, and hoses. During the day I walk four times and sit in the chair on four separate occasions. I feel so much better today and don't want to be in bed at all. Hopefully I didn't overdo it and ruin my Friday. Later On Thursday I watch the ice hockey playoff game. After the game, as the nurses change shifts, the nurse tells me that the doctors want me to uncover my trache tube through the night and use the oxygen hose (which has never managed to stay positioned effectively anyway). I try to push back and the nurse sees how super I'm doing, but the doctors have gone home for the day and the nurse cannot override the doctors' orders. I cough more in the five minutes after they remove the trachea tube cover then I have for the last twelve hours. What idiots. This is going to be a painful night.
On Wednesday night I will myself to not move so that I don't cough. This actually works for the first four hours. One of the nurses said that I was sleeping peacefully in the same poisition for a long time. Near 5am tests need to be run or an antibiotic needs to be delivered, so my position changes only enough for the activity to be accomplished. And finally near 6am the two morning doctors come and visit. They wonder why I have no trachea tube cap on and I explain the situation. And I also tell them that something is going wrong because I hear hissing out of the trachea tube. The two doctors note that a suture has come loose. Now here's where the doctors can make the right choice: they can remove the trachea tube entirely and get ready to send me home in 24 hours. But they do not. Instead they say they will restaple the trachea tube to my skin, let me go with a cover for 24 hours (as required by their rules), then remove the trachea tube entirely and let me go home. I don't understand this logic but I get my trachea tube restapled and we start the clock on the 24 hour rule. By now I'm down from tube/pipe list above to just one IR required to deliver antibiotics and etc meds and the trachea tube - the doctor having pulled out the last incision drain/bulb and my feeding tube so that I have to eat real (soft) food for a couple days before going home.
A physical therapist comes to visit and we walk to the stairs. There I walk up and down the stairs practicing my technique - long enough to convince the PT person that my edges are rough now but I understand the principles and will get better with practice. And again there's an alternative rationale for which side the cane should go on. I've gien up trying to undertsand all of this and will just keep going with my current setup. Thus on Thursday I walk two times, walk the stairs five times, and sit in the chair four times. I also note that the restapled trachea tube is still leaking - both hissing and leaving nasty mucuous on my chest if there are occassional coughs. But we'll see what happens. Just before the hockey playoff game starts, one of the doctors comes back to my room and has somewhat changed her mind. She says that if I pass the 24 hour capped breathing test that should end at 6:30am on Friday, then they can take the trachea tube out and let me go home. I'm excited at this development and start putting together my list of care questions that I needed answered before I go home. Late in the day I watch the ice hockey playoff game.
Friday starts enthusiastic and ends more so. When they wake me up (again) for a test or something I have passed the 24 hour test. Thus the nurses and doctors start working on my discharge for today. I don't really sleep after this news but I rest in bed for a bit knowing it will be a busy day. All of the final paperwork and logistics are set up and I can be discharged anytime after 1pm. Ruby texts me saying she is running late because today is Friday before Memorial Day weekend traffic - which means a disaster. But she finds me and we pack my bags and turn around for home. We have a good conversation about many topics and this makes the ride a little easier. And near home, Ruby and I pick up some supplies I need from the pharmacy and then Ruby and I sit and have another long conversation. Ruby takes leave and I enjoy walking around the house, putting things away, paying bills, and using this as a transition day before real recovery begins.
On Saturday I'm out the door at 7:25 am for a 25 minute walk (with cane). It feels great to be outdoors. I'm hungry so I grab a protein shake and catch up on a few tasks unifinsihed from yesterday. There's an exciting qualifying session from Monaco for F1. And then I trim the roses. Because I have been away for a while this is a big job (and I still don't have enough red blood cells, hemoglobin, and hematocrit). Thus I take three rest breaks during the trimming of the roses and carnations. That was hard work (considering my current physical condition). Finally I carefully get into the shower and take a nice warm shower with a plastic cover over my leg wound. It feels good to take a shower though it is with the non-foaming antiseptic soap rather than my usual soap. I then dress the leg wound and trache wound with new dressing and relax. Later there's the ice hockey playoff game to finish the day off with. Just before reading and sleep time I get an email from the CSULA senior design lead instructor. We're trying to set up a meeting with him and I and a couple of students from my team that were disenfranchised. In the email the instructor says that the entire team expressed dysfunction but every single student says I was a real help. This makes me feel good to finish the day off.
I start Sunday out the door to walk at 6:15am. I walk with the cane and at times walk without the cane. I finish up at forty minutes. After the walk I take a sponge bath because I don't want to deal with water-proofing the two dressed sites. I read the news and buy some supplies online that I'll need: a food blender, some gauze, and some special Tegaderm wound coverings. It's early, but the F1 race from Monaco is finished so I start watching my stream. The first fifty laps are very processional but without any accidents or crashes one would expect from Monte Carlo. The last 28 laps get wild as a rain shower comes in and every possible strategy in the book is utilized by various teams and with the rain, as one would expect, there are brushes with the wall and crashes and banging cars. Despite the rain disturbance, the finishing order is surprisingly like the starting order. (This is not a surprise for Monte Carlo but its certainly a surprise if it rains in Monte Carlo.) The home healthcare nurse shows up a bit after 1pm and does an evaluation of what kind of help that they can provide. After the bicycle accident it was obvious that they could provide physical therapy help. Here, I know what to do to clean and dress my wounds so I'm not sure how I can be helped. The neighbors catch me as I'm seeing the nurse off and they remark how good I look (after they saw the post-surgery pictures) and they help me out by taking the heavy trashbin out for Monday pickup and buying groceries for me since they were going shopping anyway. And later I watch the recorded Indy 500 race where three red flags in the last twenty laps breaks up the race. And the finish is performed in favor of the track owner's team.
On Memorial Day Monday I start with a 40 minute walk. I've increased the amount of non-cane walking to go with the cane walking. I don't want to get carried away. At home I trim the roses and this is a typical trim where I don't have to take three rest breaks to get through it. Today I go through the rigmarole of getting a shower and then dressing the leg and trachea tube afterwards. During the day I call the retired schoolteacher across the street and she comes over and we have a nice visit - she had not figured out that I was home yet. And later I finish the day with the ice hockey playoff game.