It’s 314 ATN and two days since the hospital staff decided they’d had enough of my company and allowed JT to take me home.
So much has happened in the last week, yet so much of it seems like it was in another world. It’s sort of like going on an exotic trip and returning home – things resume their normal routine and you wonder if you really went on that trip. Except, as JT pointed out, there is some evidence of the past week’s adventures. Namely I returned home with an ostemy as a souvenir. We’ll get to that into a later post. This one will go over the hospital stay…
Many thanks to the surgery team and the nurses at Mills Peninsula 4 West who cared for me during my stay.
Preparing for Surgery
Preparing for surgery was like a combination of preparing for the medi-port placement (a minor surgery) and a colonoscopy (the bowel prep). Of course nothing went smoothly. The surgeon’s office provided a handy sheet for “Preparing Your Intestines for Surgery”, which went over the schedule and dosage for antibiotics (Metronidazol and Neomycin) as well as a sort of OTC bowel prep consisting of Doculax, Miralax, and 64 oz of Gatorade.
The first hurdle was that Costco pharmacy called the day the antibiotics were prescribed (and the day before I was getting on a plane to Hawaii) to say they couldn’t fill the Neomycin prescription since they were out of stock. Well I wasn’t too worried since I didn’t need it for another month so asked the pharmacist to fill it when they could. Two and a half weeks go by and still no Neomycin. After researching a bit it appears Neomycin is suffering from the same fate as toilet paper, sanitizing wipes, and now baby formula. So I messaged the surgeon’s office to try to have the prescription transferred – to wherever had it. A few days go by with no response so I call the surgeon’s office and ask them to transfer it to the Walgreen’s specialty pharmacy in PAMF Palo Alto. I get a message that it’s been transferred and wait. After a few days I call the pharmacy to check on the status and their system says its ready. Great! I head over and…the person at the counter couldn’t find the prescription in the system. After a few minutes the pharmacist came over, looked over his shoulder, tapped a few keys, and magically all was made right. Apparently a wet-behind-the-ears intern was manning the counter.
Ok so now to get that 64 Oz bottle of Gatorade. How hard can that be? Well after going to Safeway, Target, Walgreen’s, and a few other stores it appears Gatorade no longer comes in 64 Oz bottles. Or 32 Oz bottles. Smart & Final had a 128 Oz bottle which in retrospect I probably should’ve gotten since I’ll probably have to do this again in a couple months. But apparently the new 32 Oz is 28 Oz (I bet they charge the same price). Amazingly I had no problems finding a 238g bottle of Miralax.
So the day before prep I’m entering the schedule into my calendar – seems there’s something to do just about every hour – and notice that the antibiotic schedule on the prescription and handout don’t match. So message the surgeon who responds quickly I can do either one. OK. Then I notice the Metronidazole dosages don’t match either. The prescription dosage is 2x the handout. At this point I’m rather fed up and decided to use the prescription dosage with the handout schedule. If I OD, well I’ll be in the hospital anyway.
I won’t dwell on the prep. Those of you who’ve had colonoscopies – the effect is then same. The one advantage is you can choose your flavor of Gatorade (lemonade for me!).
Surgery Day: Day 0
The surgery was scheduled for 7:30 AM. The hospital wanted me there by 5:30 AM. Working backwards, I’d need to leave home by a bit before 5. And I was supposed to do a chlorhexidine scrub before leaving (as well as drink 16 oz of apple juice. The apple juice is apparently all important. I was quizzed on whether I drank it when I got to the hospital. No one seemed to care about the chlorhexidine scrub….)
Thankfully my neighbor had volunteered to take me. She apparently normally wakes at 5 am, which would normally give me pause. No sane person wakes up at 5 am. But despite that she’s one of the friendliest and most caring people I know.
After checking in to Hotel Sutter Health (no that’s not the real name) I was told to head over to surgery where after a brief wait I was in my pre-op room. They asked me what I was there for. A pre-frontal lobotomy and medi-port removal. What – they had me down for a rectal resection and a loop ileostomy and no medi-port removal? I was able to get the medi-port removal added (something the medical oncologist said she’d arranged with the surgeon previously). Sadly the lobotomy was a no-go. Maybe next time.
It didn’t seem like I was in the pre-op room for more than an hour but before I knew it I was being wheeled into OR, the team was letting the anesthesiologist know they were all there, and suddenly I was on the fourth floor of the hospital in what would become my home away from home for the next few days.
I don’t have many other recollections of surgery day except at some point “dinner” arrived. Which was beef broth and some sort of juice. Somewhere along the way I managed to get my hand on my phone and texted a few people that all went well. To be honest I don’t remember sending those texts. But I do remember being woken up repeatedly that night to take some pill or other and complaining to the nurse that I’d only gotten three hours of sleep before surgery and couldn’t they let me rest just a little? (How you’re supposed to get better in a hospital when you’re not allowed a good night’s rest I have no idea. Maybe it’s to make you appreciate being discharged.)
The Day After: Day 1
The day after surgery started with a breakfast of cream of wheat, juice, and green tea. I was still on a liquid diet. Then I dozed off to be awakened for more pills and catheter removal (not a fun experience – to be honest I hadn’t realized I’d been catheterized until that point).
Then the nurse asked if I’d like to try walking or at least sitting on the side of the bed. I think I said no. I was a little cranky which happens at seven in the morning even if I’ve had a couple hours of quality sleep – which I hadn’t. She humored me (over the next couple days I came to appreciate this particular RN) but soon enough was waking me up again for something or other and somehow cajoled me into standing up with the IV pole as support. Then we slowly made our way down the hall. Probably because I was sleep-deprived my body was happy to continue putting one foot in front of another on auto-pilot. My abdomen ached a little, but not too much. So we made a circuit of the floor and ended up back at my room. The nurse was somewhat surprised we went that far and commented that the surgeon will be really happy! (When the surgeon paid a visit later in the day the first thing she told him was that we’d walked 1000 ft that morning.) My auto-pilot feet graduated me from a liquid to a regular diet, which at that point I could’ve cared less about and went back to sleep.
Naturally sleep wasn’t on the agenda the hospital had planned. At some point a wound care nurse arrived to drop off some literature and with the instruction that I was to avoid raw fruits or vegetables since they could create a blockage. She’d be back later to demonstrate replacing the ostemy pouch.
Just before noon the phone rang. I didn’t even know there was a phone in the room or where it was so it was fortunate that the nurse picked it up. Food service wanted to know if I wanted to order lunch. The nurse said we’d call them back later. Food service calls around 8:30, 11:30, and 5:30 Just In Case you haven’t been woken up by a nurse for some other reason. Before leaving the nurse showed me the menu, which had a surprising selection of appetizing options. I ended up ordering salmon with some sort of caper sauce which turned out to be quite good and some juice. They also had a pasta bar (spaghetti with olive oil and garlic was dinner that night, along with steamed carrots. And a brownie. I somehow missed the dessert menu during lunch), a breaded chicken with marinara (Saturday dinner- the chicken was a bit cardboardish), and a grill (those of you who know me will be shocked I didn’t order a cheeseburger – yes it really was on the menu – while recuperating, though I did indulge in a tuna melt on Saturday). The most surprising thing on the menu was chicken and ginger congee, which I ended up having for Sunday lunch along with a grilled cheese sandwich. I suppose there are enough Asian patients in the Bay Area to warrant having it on the menu. It was delicious! I’ll need to figure out where I can get some outside the hospital.
Shortly after lunch the wound care nurse returned with a bag of supplies and proceeded to show me how to replace the pouch. Now to be clear she did the entire thing in a minute or so and I just watched. It looked so easy. Remove the old pouch and adhesive ring, clean the skin with a moist towel, get the new adhesive ring and put it around the stoma, then attach the pouch. Easy. (NOT! We’ll get to that in the next post…if you’re a recipient of an ostemy make them watch as you change the pouch!) Fortunately emptying the pouch is much easier.
At some point the surgeon stopped by and said everything had gone great. He’d also let the pathologist visually inspect the previously cancer-infested area prior to removal. I suppose there’s some value in seeing things in-situ. In any case neither the surgeon nor the pathologist could see any trace of the tumor visually. He seemed pleased and suggested I had a “total response” to chemotherapy and chemo-radiation. The pathologist will still see if there are any detectable cancer cells, though. The surgeon also seemed to be a bit surprised that my digestive system had restarted itself as evidenced by a bit of dark liquidy waste in the ostemy pouch and started commenting that maybe I could be released the next day (Saturday). After I reminded him that I lived alone and wanted to be as independent as possible on discharge we agreed to shoot for Sunday. He would be taking a well-deserved weekend off but the internist he works with and another surgeon would be checking up on me over the weekend.
Somewhere in the afternoon a case manager also arrived to let me know that she was arranging for a visit from a home health nurse. The frequency of subsequent visits would be determined by the nurse on the first visit – and this would be covered by Anthem. But the ostemy supplies would not. Hmm. I could’ve sworn Anthem said they covered everything “medically necessary.” I suppose the pouches are only socially necessary?
There were probably a couple more visitors. It was certainly a busy day!
The Day After The Day After: Day 2
Day 2 after surgery began with a 5 am wake-up for Tylenol. Except when the nurse went to scan it into the system it informed her I’d already reached the 24 hour maximum. So she said “oh well, I’ll be back in an hour!” Did I mention there’s no such thing as a good night’s rest in a hospital?
Since it was a Saturday there were fewer people coming by. The internist the surgeon works with paid a visit as did the weekend surgeon. It was confirmed that I would be discharged the next day and we’d aim for between 11 and 1.
The highlight of the day was an afternoon visit from JT. It was a pleasant surprise – the hospital is a good 35-40 minutes away without traffic, and she was going to have to pick me up the next day anyway (Day 3 is typically, though not always, discharge day after the type of surgery I had). One thing I have to say is that although you won’t get any sleep at the hospital, this particular one has very nice rooms with a sitting area for receiving guests. You could mistake it for a hotel room if the hospital bed were replaced with a standard bed. (Actually this was rather nicer than the hotel room I’d stayed at in Hawaii…) Visitors can also order meals for $10.
Sometime during our chat I mentioned to JT that I needed to get some sharp scissors to cut the opening of the ostemy bag to fit my stoma. Those of you who’ve followed along since the chemo phase know that I’m (still) not allowed to handle sharp objects, so JT wasn’t too thrilled about this. But as it turns out she bought a pair on the way home. (Maybe because my stoma had a lot to say on the subject. One of the things about an ostemy is you really don’t have much control over it. And things can be quite…noisy…particularly in the first few days. Thankfully there shouldn’t be any odors unless the ostemy bag is leaking.)
Discharge Day! Day 3
Day 3 began much like Day 2 with an aborted early morning Tylenol wake-up that the hospital’s system refused to allow. I wonder why the nurses don’t check to see if they can give medications before waking up patients? But I suppose then some might actually end up well-rested. Can’t have that!
After a breakfast of banana pancakes I started getting ready to go home. Which apparently involves a lot of waiting. I started wandering around the floor and ran into one of the innumerable people I’d met during my stay (a social worker I think) who cheerfully remarked, “Haven’t we gotten rid of you yet?” While ambling through the halls I came across the surgeon who visited yesterday, who had apparently been looking for me. I suppose to give a final once over and her consent that I be allowed to set foot outside the hospital.
Back in the room I started packing up. Which largely meant collecting all those things they said not to bring, like a laptop, iPad, and iPhone (even with those I was bored Saturday night).
Around 10 JT texted to see if the discharge time had been determined yet. Nope. By 12:30 it was clear I wasn’t leaving any time soon so ordered lunch. Then the case manager came by to inform me that home health had been set up and a nurse would be visiting the next day. She also said she was one of the last people that needed to see me. Woo hoo! Finally at around 1:45 the nurse came by to say the discharge orders were being written up. Shortly after she ran back in to ask which pharmacy I use, then said it was to prescribe Gabapentin. For the peripheral neuropathy. What?! Why were they trying to treat the peripheral neuropathy when my medical oncologist and I had already decided to let it heal with time? After a short discussion the Gabapentin was removed and the discharge paperwork contained one medication: Tylenol as needed for pain.
Since it was becoming clearer I was about to venture out into The Real World again I changed from the hospital gown into shorts and a t-shirt. I was wondering how this was going to work since the stoma is at waist level and I don’t want it blocked by a belt or waist band. The weekend surgeon had suggested I could either wear pants “old man style” high or (“young man style”?) low. I can’t remember which I ended up with and am still trying to find the most comfortable way of wearing shorts. (Actually wearing medical scrubs might be the most comfortable and I’m of a mind to order some…)
Finally at around 2:45 JT arrived. I was really going home! After a quick inventory of my belongings (we’d made a list sometime on Thursday) the day shift RN who had been caring for me for the past three days walked us to the elevator and I asked her to convey my thanks to the nursing staff. (Interestingly the vast majority of the RNs and nurses assisting them were Filipino. Some things I learned: “Jun” which I thought was a popular Filipino name is actually short for “Junior.” And there apparently aren’t any Filipino eateries because they all eat at their mothers’.)
After arriving home JT went to fetch her overnight bag so she could spend the night. Just In Case. The top item on my wish-list was to take a shower. They gave me body wipes in the hospital which do a decent job, but after four days I really, really wanted to wash my hair! After JT returned we went out for a walk around the neighborhood. There was some slight aching in my abdomen, mostly around where the sutures are (there are four or five of them) but other than that I was feeling pretty good.
By this time the whole hospital experience was beginning to seem like a surreal memory. If it weren’t for the ostemy pouch hanging off my belly it would be easy to sit back and think it never happened,