Thursday, October 06, 2005

Going with the flow, hitting a wall

It’s a little after 9:00 on Saturday morning. I’m in the Infusion Room, cyterabine flowing through the new PICC line in my left arm; the PortOCath is gone. The joint’s jumpin’. Across the room to my left someone’s watching TV; sounds liken adventure movie of some sort, lots of dramatic music. Or maybe it’s just a commercial. In the chair to my immediate left is an art teacher from a local high school who says she’s been teaching for over 30 years and that this thing is not going to get her. In the chairs to my right are a couple of other women; one sounds young; she tells the nurse she has a 19-month-old baby who’s doing fine. The woman to her right sounds much older, maybe in her 70s, but it’s hard to tell—cancer and chemo make people so tired, and their voices can sound older than they are. In the time it’s taken me to write this the teacher has gotten whatever medication she came for and left. Nurses talk to patients and each other, explaining procedures, taking measurements, checking in. by the time I go to bed tonight I’ll be done with the third round of consolidation chemo, though not with the aftermath, the ebb and flow of my blood counts.

It’s been another difficult week. Starting chemo on Tuesday didn’t help—I’ve been confused about what day it was ever since—but that’s just a small piece of the general chaos. Peg Syverson came over for dinner on Tuesday night, but by the time she got there I was feeling crummy and lying down, and although I got up and joined her and Anna at the table for dinner I didn’t have much of an appetite and excused myself after a while to go lie down again. After a bit Anna and Peg came to join me, bearing a bowl of chocolate ice cream with berries. I couldn’t eat much of that, either. Anna prompted me to take my temperature, and I got a shock: it had spiked to 102.9. After a couple of calls to the Medical Exchange we were off to the Emergency Room at St. David’s again with instructions for them to draw a couple of blood cultures and send me home; I was to come over to the Cancer Center in the morning and we’d take it from there. We got home a little after 12:30, with my temperature down to 99.5; I took my various pills and went to bed.

My temperature was back up to 101.2 when I woke up on Wednesday morning, and I still felt bad. At 8:30 I called Tucker’s nurse, Estee, and set up an appointment, but she called back half an hour later and told me that Tucker said it would be better for me to stay home and rest and come in for my chemo on Thursday at the usual time. So that’s what I did. I felt too wiped out to do anything else, and was actually grateful I didn’t have to go anywhere. I felt guilty about missing the conference call for my team to work on the accessibility guidelines, but I knew I couldn’t handle it.  I drifted in and out of sleep all morning as my temperature gradually came down By mid-afternoon I felt well enough to make a couple of short phone calls, but that was pretty much it for the day.

Thursday was one of the most difficult, stressful days I can remember since I got out of the hospital—two months ago now. I was scheduled for chemo at 8:30, and I dragged myself out of bed, still feeling week and dispirited, to take my shower and feed Dillon so Anna and I could go out to breakfast on our way over to the Cancer Center. Various people asked me how I was doing—Cheryl, the sweet-natured phlebotomist who drew blood for my CBC that morning; Micky, my Infusion nurse; several others—and I told them what had happened on Tuesday and that I was still feeling badly. Micky got the Kytril going and hooked up the cyterabine when that was done. An hour or so into it I was feeling better. The strain was almost gone from my voice, and I wasn’t feeling nearly as tired as I had when we got there. The Cephadril (sp?) that I’d started taking on Tuesday night must have been working (Dr. Tucker had written the prescription on Friday, with instructions to take it if my temperature went above 102).
Then the confusion set in. Apparently no one had spotted an email from Dr. Tucker, who was down at the South Austin clinic that day, with instructions to stop using my PortOCath because the preliminary results of the blood cultures from Tuesday night showed that the port was infected: the chemo should be administered peripherally. But it was too late for that. Hasty arrangements were made, and I was taken downstairs to Austin Radiological Associates, this time to have a PICC line installed—a Peripherally Installed Central Catheter like the one I’d had during my hospital stay in June and July.  A doctor from Austin Radiological could also do the minor surgery needed to remove the infected port—I would have to come in the next morning, though, because they planned to put me under sedation and couldn’t do it that afternoon because I had just eaten lunch. Four hours had to elapse before they could sedate me and it would almost be closing time by then, so we’d have to wait till the next day. That was fine with me anyway.
Meanwhile, downstairs in the Austin Radiological waiting room, Anna called my cell
phone; I heard the ring, but was evidently in a semi-dead spot and couldn’t actually connect with her when I answered. I tried to call her a couple of times but couldn’t get service. I had Dillon lead me over to the reception desk so I could ask for a land line. The receptionist came around the counter, led me to a chair, and gave me a phone to use. I called Anna to let her know what was going on and what the plans were. When I told her about the plans for having the PortOCath surgically removed the next morning, her upbringing as a surgeon’s daughter came to the fore. She asked me for the name of the surgeon who would do the actual work, and when I couldn’t tell her she said to wait until we could find out more. She had very much liked Dr. Fleming, the surgeon who had implanted the PortOCath in late July—we had both liked him—and it would be better if he could do it. But I had called Fleming’s office before going downstairs to have the PICC line installed, and his nurse had told me  that  Dr. Fleming was out of the country—in Nicaragua along with a doctor from the Cancer Center—and wouldn’t be back until Friday. I      assumed this meant that Fleming wouldn’t be back in the office till Monday., Dr. So I went back upstairs, and my new PICC line was used for the first time, to give me a dose of Vancomycin, an antibiotic that I’d been given in the hospital and which may have caused the red rash that bloomed over my entire body during the first weeks of my hospitalization (Red Man Syndrome, it’s called, but I didn’t hear that name till much later—from nurses, not from doctors, interestingly enough).

Anna came to the Infusion Room to talk with me and the various nurses about what we were going to do and who was going to remove the PortOCath. Rightly, she was adamant that Fleming should perform the procedure.
Finally, after much scurrying back and forth, we agreed that Estee, Dr. Tucker’s nurse, would schedule the surgery with Dr Fleming for the earliest possible date next week as well as canceling the appointment with Austin Radiological which had already been set for Friday morning. Meanwhile, it had also been decided to switch me from Vancomycin to Cubicin. Cubicin would be better—especially because it required only one dose a day rather than the two doses needed for Vancomycin. Problem was that the Cancer Center didn’t yet have Cubicin in the pharmacy—it was very new, apparently—so they had also arranged for me to go to another infusion room, Innovative Infusions. For a dose of Cubicin on Friday, Saturday, and Sunday; they would try to arrange to have Cubicin for me at the Cancer Center on Monday so I wouldn’t have to go to different places—I was scheduled to see Tucker at the Cancer Center on Monday afternoon.

But that evening I would need a second dose of Vancomycin, which couldn’t be started till after the evening dose of chemo was finished. That would be about 11:00, probably. So Micky quickly showed Anna how to switch me over from one drug to another and sent us home with two, count ‘em two, IV pumps. I lost it when we got home, just sat on the living room sofa with Anna and wept with frustration and rage and confusion and fear. I felt like a very old ball in an old fashioned pinball game—I’d been bounced and flipped and bounced again, and I was tired and confused and sore. I think Anna felt pretty much the same way. Neither of us could stand the idea of cooking, so for solace we took ourselves up the street to Asti, the wonderful little trattoria where they know us way too well. I wanted to wait till we’d ordered to take my Kytril, so that didn’t happen till about 7:30. And that in turn meant that I didn’t get the chemo started till about 8:50, when we’d come home from our lovely dinner, and that meant that the chemo wasn’t done till almost midnight. Anna had fallen asleep, and I woke her guiltily to ask her to switch me over to the Vancomycin. That was when we discovered that the PICC line was set up a little differently from the PortOCath—just enough to be confusing—and that the Vancomycin IV was connected to a different brand of pump than the one we were used to. So we forgot to open the clamps on the line, and the pump beeped angrily to let us know something was wrong. I pushed a button to shut it up. But of course I pushed the wrong button, and instead of stopping it kept beeping and displayed a cryptic message on its LCD screen: HIP, it said. So we got into the car and drove over to the Emergency Room for the second time in three days, to see if someone there could help us deal with the damn pump. But getting into the car wasn’t all that simple, either—earlier in the day something had scrunched the driver’s side door, and it wouldn’t open; so Anna had to get in on my side and climb over the center console into the driver’s seat, then reverse the process at the other end. We reached the hospital, and I went on in while Anna went to park. When I walked up to the desk the triage nurse said only, “Are you still having fever?” I explained the situation and showed him the PICC line. He gave me a quick explanation about how it should work, and I told Anna when she joined me in the waiting room a minute later. She made a few more attempts and got it working, so we headed for home and got into bed.

Side note, October 5th: My neutrophil count is dropping. It is not emotionally helpful that the radio and TV news have added the possibility of an avian flu pandemic and the global unpreparedness for it to their reports on hurricanes Katrina and Rita.

On Friday I was scheduled to go to Innovative Infusions for my first dose of Cubicin, the new antibiotic that only needed to be infused once a day and didn’t have the potential side-effects of Vancomycin
. When Anna and I got there, we discovered that the clinic—which turned out also to be known as Austin Infusions and Jefferson Street Infusions—was housed in a records-storage area in the back of the Jefferson Street Family Practice, where I’d briefly been a patient in the late 80s when we were living in that part of Austin and the building was on my bus route between campus and home. It was total chaos—a tiny room with several patients in an assortment of chairs and one harassed-sounding nurse, whose cell phone kept ringing as she was trying to get various IVs going. She got me hooked up, and about 10 minutes later my cell phone rang. It was Phyllis, Dr. Fleming’s nurse Fleming was in the office (evidently I had misunderstood what she had told me the day before). Could I possibly get there at say 2:00 or 2:30 so he could remove my PortOCath.  Sure I could. That was several hours away—lots of time to plan… But a question occurred to me: if he was going to do the surgery in his office, would he still be able to put me under sedation? I didn’t relish the idea of being awake for this—Lance Armstrong had described the removal of his port as a really painful experience, and I really really didn’t want that. No, Phyllis said, he would use a local anesthetic.  But it would be OK, she said: “Trust him, he really knows what he’s doing.” I hesitated a second, then said OK, remembering how I had liked him earlier and how confident both Anna and Dr. Tucker were of him. OK. I took a deep breath, exhaled, and sat back in my chair to finish the IV. My phone rang again. It was Fleming’s office again, but this time it was Karen in scheduling. Could I possibly come over there right away? He could work me in. Well, there was this little problem of an unfinished IV, but I would get there as soon as I could after it was finished. The IV finally finished, Anna came to pick me up, and off we trundled to Dr. Fleming’s office. This time, unlike July, I got precise and accurate instructions about which garage to park in and which office to go to, so that part was smooth.

Everything else was smooth, too. But of course “working me in” meant sitting and waiting while Fleming worked on other patients who’d been scheduled ahead of me, so it wasn’t until maybe 12:15 or 12:30 that I actually got into an examining/surgical room, and maybe another fifteen minutes after that before we got started.  Dr. Fleming explained in a calm, unhurried, and precise way what he was going to do. He understood that I was anxious about the local anesthetic, so he proposed “a little experiment”: he would inject a little numbing medicine (Lidocaine) in the area where he would be operating, and if I was OK with that he would go on and numb the rest of the area before removing the PortOCath. That sounded OK, and that’’s what happened. I felt no pain except for the initial prick of the needle with the local anesthetic, but I was aware somehow that he was making an incision in the skin just above my left breast, and a few minutes later I felt him tugging lifting something—presumably one of the two “lumens” belonging to the PortOCath—and heard or felt (I’m not sure which) him snipping, snipping. Presumably he was cutting the PortOCath away from whatever holds it in place. I felt a stronger tug, and exclaimed: “I felt that!” He immediately stopped and asked if I’d had any pain. “No,” I said, “just felt the tug.” That was OK, he explained—that was how he had to remove the PortOCath. I’d probably feel a couple of similar tugs. I did, and then he told me that the PortOCath had now been completely removed; the only thing left was to suture the wound (earlier he had explained that he couldn’t use self-absorbing sutures in the office, as he would have done had we been in the operating room at St. David’s; I’m not sure why). So he stitched me up, bandaged me, and we were on the way. I must say I’ve experienced no real pain—just a little soreness that evening and the next day. But I was still exhausted when we got home late that afternoon, and I’m sure Anna was, too.

The downside of the switch to Cubicin was that I would have to have infusions on four consecutive days. That meant trips to Innovative/ Austin/ Jefferson Infusions on Saturday afternoon and again on Sunday morning as well as on Monday afternoon (apparently it wasn’t that easy to get it over at the Cancer Center). Well, it turns out that the Jefferson Medical Building closes at 1:00 on Saturday afternoons. Apparently no one at the clinic knew that because no one at the clinic had ever done infusions on Saturday afternoons before. But now they had four of us scheduled. We went nuts for a while trying to get in, then finally someone with a key took pity on us and we followed him in to the elevator. When we got to the clinic the nurse we’d been expecting—the one from the day before, who’d said she’d be there—wasn’t there. Instead there was another woman, who seemed very competent but who was also clearly frustrated both because the place was so tiny and because she couldn’t find all the supplies she needed ready to hand. Eventually she found everything and got all of us connected to our IVs, and everything went fine from there. Sunday morning went more smoothly: Colleen, the nurse who would be working that morning had been my chemo nurse at the Cancer Center on Saturday, and she had done it often enough to know that the building would be closed and that she’d need to arrange to come down and let us in. She had actually had the foresight to tape a note to the front door giving us a number to call so she’d know to come down and get me.

On Monday I went to the Cancer Center for another CBC, then went back to the other clinic for my last dose of Cubicin. My blood counts were down. My neutrophils were still above 1000, but my platelets were down to 102 and my hemoglobin was down to 8.7. Dr. Tucker said he’d been talking with colleagues at M.D. Anderson and they’d agreed that it was safe to use drugs like Neupoegen (which boost white blood cell production) for patients in situations like mine—in remission, and exhibiting no problems. I liked that as a description of my general situation, but I double checked to be sure he hadn’t been having that conversation with M.D. Anderson because there was something about my case in particular that concerned him. No, he said, it was just a conversation about a situation that I happened to fit into. Fine. But he did want me to have a transfusion, so we got that set up for today (Wednesday).

Yesterday morning I had breakfast with Jim Thatcher and Jim Allan to talk accessibility, etc., and afterward Jim Allan drove me over to St. David’s so they could draw the blood sample needed to be sure that my blood is still B positive. That took about 15 minutes, I think, but there was an ominous note: Kerry, the young admissions clerk who had worked with me the last several times I’d been to St. David’s told me that this would be her last day—she was transferring to a different department. That meant that whoever checked me in this morning would probably be new, and I was sure that didn’t bode well.

I was right. Anna dropped me off at the hospital a few minutes before 8:00 this morning, but the woman at the main desk clearly didn’t pay a whit of attention to what I told her needed to happen next (I had registered the previous day; I just needed to check in and get someone to take me to the Day Recovery unit). So I cooled my heels in the waiting area for 20 minutes. Then I got up and asked loudly if I could be admitted so I could go ahead and get the transfusion I came for. The woman from the main desk came and told me I hadn’t been waiting that long, and we just had to do what we just had to do; I needed to wait. I fumed and waited. A few minutes later another woman came and took me over to her desk in Admissions. Thing seemed to be going along all right, if a bit slowly, until she said she was going to come around to my side of the desk, snip off the admissions bracelet I’d been given yesterday, and give me a new one. No one had ever done that before, I told her, even though I’d been doing this very same thing every couple of weeks for several months now. “Oh,” she said, and did it anyway. Then she guided me back to the Day Recovery unit.

Helen, the nurse who’d worked with me on a couple of previous visits, came out to get me and led me back to the room I’d been in last time, two weeks ago. Again she had a couple of heated blankets for Dillon to curl up on, and one for me to get down under once I got into bed. I handed her the instructions from Tucker, which called for a CBC prior to the transfusion. I told her I no longer had a PortOCath, that I had a new PICC line that had been installed last Thursday. She said they would have to do a chest x-ray before going any further, to make sure that the PICC line hadn’t become displaced in the meantime. I was stunned. What was that about? But it was hospital procedure. So I waited till the x-ray tech came in with her portable machine. Then we had to wait for the results to come back. All clear. So now we could do the CBC. That took about two minutes. Then more waiting for those results to come back and be faxed to Tucker in case he needed to change the instructions. The wait dragged on. Then Helen and Peter, another nurse, came in and said we were finally good to go.  Finally, they emphasized. What’s up? I asked, and they said I didn’t want to know. But of course I did, so they gave me the short version. The newbie admissions clerk had created a new account for me when she checked me in this morning—hence the snipping off of the old wristband and the placement of the new one. That in turn created a problem: I was now on a different account than the blood that had been ordered for me, which meant that they couldn’t give me the blood! Helen had spent a bunch of time on the phone and had finally gotten it straightened out (bless you, Helen). So now they could actually start the transfusion—a mere three hours after I’d arrived at the hospital.
Now that’s done. Tomorrow afternoon I go back to Dr. Fleming to have the stitches removed from my chest, and on Friday morning I get another CBC at the Cancer Center. There’s nothing else on the calendar, thank God (I mean nothing else medical). Anna’s in Cleveland on business (she’ll be back late tomorrow afternoon), and Evan Carton, my oldest friend in Austin, has generously agreed to come over and spend the night just in case something goes bump and I need a quick ride to the hospital. I’m sure that won’t happen, but I’m glad he’s coming anyway.
“With an illness like this, you just have to go with the flow,” Dr. Tucker said last Thursday evening. He had called to see how I was doing and to make sure, after all the “commotion” earlier in the day, that we had a shared understanding of what would happen over the next couple of days. He’s right, of course. But however good I may be at doing that, I had hit a wall that day—the “flow,” such as it was, had swept me right smack into it. Thursday was a really, really bad day, and since then I’ve felt that all my resiliency is gone. I blew up at the admissions clerk this morning, not just because I was furious with her for saying “Next time, you should let us know in advance that you’re coming in,” but because that snafu was the latest in an increasingly long string of misadventures and things gone awry, and my reserve of good humor was just plain empty. I’m sure it didn’t help that my red blood count was so low, either. I was still fuming as Helen got me settled in my room and when Peter came in to see how I was doing. The idea of the chest x-ray made me even crazier. But when they came in and told me the story about the bungled account setup at the admissions desk, I just started laughing. Somehow it flipped from something that was about to turn me into a raging lunatic into something that was just plain silly. It will be important for me to hang on to that sense of the absurd—I’m sure I’ll need it. But I also need to look hard at that wall inside myself that I’ve run into. It’s not just frustration. It’s fear, too. I’m not ready to look too hard at that right now, but I’ll have to.


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