Monday, August 15, 2005

Confused, transfused, readmitted, and re-released

Hi, all.  You may not share my feeling, but I’m grateful that it’s Monday today! Last week was so, um, interesting.

Here’s the quick version:
  • Monday: Blood test. Counts starting to come down as a result of chemo.

  • Tuesday. Ordinary life (how wonderful!).

  • Wednesday: Blood test. Counts are coming down even farther as result of chemo; doctor says I need a transfusion. We go to hospital for (another) blood test; no one there knows we’re supposed to be registered (crucial step missing!)

  • Thursday: Confusion and I get a transfusion as an outpatient, but it takes a few hours longer than necessary because of missing step yesterday ; wake up in the middle of the night with chills and shakes followed by (fairly low-grade) fever

  • Friday: Blood test, appointment with doctor; counts are very low; we go back to the hospital; another transfusion

  • Saturday: hospital, IV antibiotics, feeling OK

  • Sunday: hospital, IV antibiotics, one more transfusion, then HOME!

The long version
Monday and Tuesday were uneventful enough—I went to the Cancer Center Monday morning for a routine blood test, which showed (as everyone expected) that my counts were coming down as a result of the chemo—red blood count was down, platelets were down, white blood count was down.  But everything was still in the normal range, though the red count was getting close to the threshold when a transfusion would be needed.  Anna and I met with Dr. Tucker, and he prescribed a shot of Aranesp to build my count back up—though he warned that it wouldn’t really take effect right away. The nurse who administered the shot told me that it would “burn a little” going in, so I braced myself for that, but I didn’t feel a burn (hurray!).  She also told me I’d get an energy burst later in the afternoon, which I did (also hurray!), and on Tuesday I went to the gym for a very light workout, the first since a couple of days before I went into the hospital in June. I enjoyed that, and it felt pretty good—not too tiring, even; but I did get a bit sore in the area of my chest around the PortOCath implant, a soreness that lasted several days.  I guess I shouldn’t be surprised, since there’s something there that wasn’t present the last time I worked out, and there’s some tissue missing that was there.  I think I’ll call the surgeon who did the implant and ask him for advice about exercise.  Brilliant hindsight!

On Wednesday I went in for another routine blood test—it takes just a few minutes, and we just turned around and came home as soon as it was done, since I wasn’t scheduled for anything else that day—no appointment with the doctor, no chemo, no shot. But later in the morning the triage nurse (the one who gets the lab results first so she can figure out what’s urgent and what’s not, etc.) called with the test results: the white blood count was now very close to “neutropenic” (fewer than 1,000 white blood cells overall, meaning increasing vulnerability to infection), and my red blood count had slipped below the threshold for a transfusion. And my platelets were below normal, too.  She would pass these along to the doctor, and meanwhile I should be very careful—no sharp instruments (yes, she literally said that).  A bit later the doctor’s office called to say I’d need a transfusion the next day.

This is pretty standard stuff—they had told us on a previous visit that this would probably happen, and that if it did we would simply check into the hospital for 23 hours (I.e., not a full admission), get the transfusion, and be done.  

The idea of spending 23 hours in the hospital for a transfusion that takes 5-6 hours didn’t sit well, so we asked if there was a Better Way, and learned that we could go over to the hospital later that afternoon for (guess what?) another blood test, this time to type and cross-match, and then we could come back again in the morning for the transfusion.  That sounded pretty good, so we went for it.

So we drove over to the hospital (which is quite close to the house, as I may have said sometime previously) and stopped at the Admissions desk, as per instructions.  They had never heard of us, hadn’t gotten any orders that they could find, etc., but they sent us on to the lab.  The lab said they couldn’t do anything without orders from the doctor, so someone there called the Cancer Center and got the orders faxed (or re-faxed; who knows?).  Meanwhile Anna and I sat in the waiting room, which was incredibly cold—I don’t know how they had the air conditioning set, but it felt arctic in there. After a while the orders came in and the tech came and got me and drew my blood, and that was that. So we left.

It seemed a little odd that no one had told us what time to show up in the morning, but we figured it didn’t really matter all that much—the blood would be there waiting for me when I arrived; so on Thursday morning we got up at our usual time, went out for breakfast, and then went over to the Day Recovery unit at the hospital for the transfusion.  Well, once again the Admissions desk had never heard of us, and the woman behind the counter seemed utterly uninterested in investigating.  So we left in frustration and drove home, so that Anna could join her 8:30 conference call with clients while I got on the phone and tried to sort out what was going on.

But just as we were turning in to our street my cell phone rang, and it was someone in the Day Recovery unit saying that they did know about me after all—they just hadn’t been expecting me till 9:00 AM so the information about me hadn’t appeared on their screens yet (!).  There was just barely time for Anna to turn around and drop me off at the hospital and still make her call, so back we went. This time a nice woman at the Admissions desk got me formally admitted (i.e., she took down all the information they already had in their system and gave me a new wristband), then walked me to the Day Recovery unit waiting room.

I waited for half an hour (they had me down for 9:00, remember) and then someone came and got me.  She took me to a small private room, brought a blanket for Dillon to use as his bed, and asked me to lie down on the bed.  A few minutes later someone else came in to “access my port” (i.e., get the PortOCath ready for the transfusion), set up a saline drip—and then mentioned that they would go ahead and order the blood from the lab—shouldn’t take too long.

Two hours later the blood still hadn’t arrived. I was ready to do my martyr act and wait it out, but Anna’s much smarter than that and she called and suggested I ask (ever so nicely of course) if I could leave for a while and go have lunch with her and Diane. This sounded much better than eating a hospital lunch, so I asked the nurse.  She was a little startled but said she’d check; she checked, the Powers That Be apparently said yes, and she came back and unhooked me from the IV and then helped me out to the front door.  Anna and Diane picked me up, we drove over to Hoover’s on Manor Rd. (not far at all), and had a wonderful lunch.  Then we went home to wait. A little while later I decided to take a chance and call over to Day Recovery.  The nurse who answered the phone said cheerily, “It’s ready!” when I identified myself, so Anna drove me back over there yet again.  From then on it was pretty straightforward—I got back into bed, they reconnected me to the pump and got the blood flowing, and I was out of there a little after 6:00 PM.  We went home and fed Dillon, and then went out to dinner.

But the day wasn’t over yet (we’re just at Thursday evening, remember). At about 2:30 in the morning I had a fit of chills and shaking that woke me up. It was strange—I knew I didn’t feel like I had any fever, but I knew from my experience while in the hospital that fever would come in a little while. I woke Anna up, and she brought me an extra blanket and took my temperature.  97. something.  Meanwhile I called the Medical Exchange and they put me on to the doctor who was on call that night, Dr. Haalder I think, and told me to call his home number.  I did, hoping I wasn’t misdialing, and the voice at the other end said to take some Tylenol and “push a lot of fluids.” So I took Tylenol and started drinking water.  For the rest of the night we got up every 30 minutes so Anna could take my temperature again. It rose steadily but never got too bad—no higher than 99.8, if I remember right.  And then it started to come down.  By 7:00 AM or so it was within normal range, and we relaxed a bit.  

It was on the rise again by lunchtime, and I didn’t feel great. Fortunately, I had an appointment with Dr. Tucker at 2:45 that afternoon.  When I told him about it he got very alert. My temperature was normal again (I’d taken some Tylenol at lunchtime), but he went and got the results of my most recent bloodtest (from a few minutes earlier), and when he came back in he said he had “bad news and bad news”: my red count was still down despite Thursday’s transfusion (That transfusion must have been swimming against the current of the continuing drop caused by the chemo), and my white count had fallen below the threshold.  He had a third bit of bad news, he said: he thought I should go into the hospital—he said we could either go now or go “in the middle of the night…” He said I’d be there over the weekend for sure, possibly for as long as a week. We didn’t like the sound of that “in the middle of the night” business, of course, so we took the “now” option.  His nurse called to make sure there was a bed for us and got the paperwork ready.

So back we went to St. David’s.  We checked in, again providing the same information we’d provided the day before, and we went upstairs.  When we walked off the elevator onto 4 West the shift was just changing, and we saw several of the nurses who’d been so great when we were there before.  There were smiles and hugs all around—they were delighted to see Dillon and glad to see us too, though we all knew there was something weird about saying how great it was to see us when we were checking back in… But it really was nice to see them—they’re really nice people, good at their jobs, and deeply caring—and they really had taken great care of me during that long, difficult hospital stay that had ended just three weeks earlier. They even went to the trouble of giving us the same room we’d had before! And I do mean “trouble”—it had been occupied until just a little while before we got there, so it needed to be cleaned thoroughly and carefully checked before I could go in there.  Meanwhile I sat in a vacant room and talked with the tech who came into to check my vital signs and another tech who’d seen that I was back and came to say hi.  Eventually my old room was ready, so we went down the hall and settled in to wait.  For what? You may ask.  Why, for more blood of course! Because I needed two more units and some platelets.  The blood had to come from the Blood Bank, then go to the lab over at Brackenridge Hospital to be irradiated (to get rid of any nasty things that might be lurking in there to hurt me), then be delivered to St. David’s and to my room.

Of course they hadn’t been able to order the blood till I’d been admitted (which turned out to have been the problem with the delay on Thursday—since I hadn’t been formally admitted on Wednesday, no blood got ordered till Thursday AM when I checked in…).  All that takes a while—the first unit didn’t start running into my veins till 2:45 AM! And the second one didn’t finish till almost 9:30 on Satur4day morning.  But in the meantime they gave me a broad-spectrum antibiotic IV plus some other fluids to get my electrolytes back into balance, and Anna went out and got us some dinner and fed Dillon and took him for a walk.  I couldn’t see any reason for her to sit there twiddling her thumbs for what we both knew would be a long wait, so she left to catch the last hour or so of Bodychoir (the wonderful dance community we both enjoy so much).   I went to sleep a little while after she got back.  After the nurse woke me up to get the transfusion going my neck and shoulder hurt (over on the side where the catheter is, probably an aftermath of my trip to the gym earlier in the week).  So she gave me some nice medication for the pain and I drifted off again…

Nothing much happened the rest of the weekend, really—Ledia was working on job applications and thinking about her installation at the Austin Museum of Art (the opening of the 20 to Watch show will be on August 20! So be sure to catch it if you’re in Austin); Sue Heinzelman brought lunch on Saturday (thanks!), and Ledia brought lunch on Sunday, and Anna brought dinner both days… But not a whole lot of people knew I was back in the hospital—it had happened quickly and although we weren’t sure we didn’t really believe we’d be there all that long, or maybe we were just hoping).  So it was very quiet, which was actually probably good for me.

Dr. Tucker came by at about 9:30 on Saturday morning and we chatted for a couple of minutes—I was still groggy from the pain medicine, and they hadn’t yet done the day’s blood work since the transfusion had just finished a few minutes earlier.  So he left to finish his rounds (he was on call for his group this weekend), and I rested; did a little reading; rested some more; had another antibiotic IV—and so the day went. Peaceful, really, except for the nagging uncertainty about how long I’d really be in there and the weirdness of being there in the first place—it’s a normal part of this whole awful process, we’d been told, but it was still a chock to be back in the hospital, even though I certainly felt far better than I had when we checked in back in June. But the day passed, the nurses were friendly and helpful, and it was OK.  And no fever.

Sunday morning Dr. Tucker came again—about 8:00 this time I think, though it might have been a little later.  This time he had two days’ worth of blood work to look at, and the results were good. He ordered two more units of blood and said I could go home as soon as they were done.  So that’s what happened—again most of the day was spent resting and waiting for the blood to arrive, which it finally did a little before 5:00 PM.  The day-nurse, Lisa, got it going and the night nurse, Annalisa, finished up at about 9:30 or so in the evening.  Then there was some more waiting while everything got into order; Anna took a bunch of stuff down to the car in the meantime.  Finally it was time to go, and the tech, Daniel (a lovely man whom I like very much) put me into a wheelchair built for a HUGE person and wheeled me down to the lobby and out to the car. I thought I could walk it, but they said I shouldn’t since the transfusion had finished so recently.)

And that was that.  We got into the house at about 10:30, very very happy to be home again. I took Dillon out for his late walk (a very short one) and came in and went to bed.  And here we are.  It’s good to be home!
Further adventures to follow, I suspect.  Stay tuned, and thanks very much for reading this far!

Love to you all,John, Anna, Ledia and Dillon


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