Web sites about cancer aren't accessible

“Stay informed” is high on the list of advice given to cancer patients.  And there’s a lot of information about cancer online. A lot. But a great deal of is inaccessible to cancer patients and caregivers who are blind, including me.

Here are a few of the cancer-related sites where I encountered accessibility problems, including important things such as graphical links without alternative text, form fields without labels, and large blocks of material repeated from page to page with no way to skip over them :

• Lance Armstrong Foundation (http://www.laf.org)


• American Cancer Society (http://www.cancer.org)


• Leukemia and Lymphoma Society (http://www.leukemia-lymphoma.org)


• WebMD (http://www.webmd.com)


• Johns Hopkins University Kimmel Cancer Center Leukemia Service (http://www.hopkinskimmelcancercenter.org/specialtycenters/facility.cfm?facilityid=22)


• M.D. Anderson Cancer Center’s Leukemia Department (http://www.mdanderson.org/departments/leukemia/)

The Lance Armstrong Foundation and Kimmel Center sites are just about completely useless to patients and caregivers who depend on screen reading software, as I do. I find this especially galling, since the Armstrong Foundation is Austin-based and Johns Hopkins is an important research center and likely offers valuable information. It’s doubly annoying since my Ph.D. is from Hopkins.  I guess I should have been more responsive to all those letters begging for money over the years.

The Mayo Clinic’s Leukemia page (http://www.mayoclinic.org/leukemia/index.html) gets it almost right—the search form isn’t labeled (JAWS just says “Edit,” and you have to guess the purpose of the field), but the text on the page is organized under properly tagged headings and sub-headings, making it easy to navigate to the material I want (and, incidentally, allowing me to skip over the repeated navigation links).  There are even warnings about links that will cause a second window to open! Those particular links point to another Mayo Clinic site, www.mayoclinic.com (not .org), and, much to my surprise, those pages even have a “Skip to main content” link in addition to structured information! Someone at Mayo is making a deliberate and largely successful effort at accessibility, and that effort deserves recognition. Thanks, Mayo Clinic!

Making Web content accessible isn’t rocket science, and professional Web designers and developers like the ones who create and maintain the sites listed above should have heard about it by now.  The US government’s standards for accessible electronic and information technologies, including Web-based information and applications, took effect in June 2001.  That’s more than four years ago now. The World Wide Web Consortium published its Web Content Accessibility Guidelines 1.0 two years earlier, in May 1999. In Web-time, in other words, this stuff has been around nearly forever.

Accessibility is what I do for a living, but this isn’t simply about professional pride, nor is it only about the frustration and anger I feel personally as I try to learn more about leukemia and how it may affect my life. Millions and millions of people, in the United States and elsewhere, are being directed to the Web for medical information that can dramatically affect their lives—patients, caregivers, friends, co-workers, medical workers, researchers, people caught up in war, people caught up in ordinary life. Many of those people have disabilities.  There’s no excuse for major medical sites’ being inaccessible to them—to us.

Milestones

As of yesterday I’d been home from the hospital for a month (including last weekend’s short stay). It’s not a long time in the grand scheme of things, but it does seem like some sort of milestone just the same. I marked the occasion by going to the SWRCC (Southwest Regional Cancer Center) for another blood test, to see if my counts were high enough to start the next round of chemo.

They weren’t, but they’re getting there.  The hemoglobin count was actually down a little, to 12.4 from 12.7 on Friday.  But everything else seems to be on the way up.  My platelets were very high (“You could donate platelets,” said Micky, the chemo nurse who brought me my lab results).  The ANC (Absolute Neutrophyll Count, a term I hadn’t heard before) was up slightly, from .2 on Friday to .4 yesterday—it needs to reach 1.2 before chemo can start again.  The good news is that my monocytes were up to 66%; this was another term I hadn’t heard before, but Micky said it’s an indicator that the neutrophyll count is on the way up.  The upturn in the platelet count is an indicator, too, at least in my case—when I was in the hospital, my platelet count shot way up several days before the neutrophyll count started to climb. Micky showed the results to Dr. Tucker, who said I should come in for another test on Thursday; depending on the results, the next round of chemo (second of four consolidation rounds) will start either Friday or next Monday.

Dr. Tucker said I’d “surprised” him—my white count had seemed to be on the way up after bottoming out right around the time I went into the hospital last weekend, but then it had dropped again. I don’t think I like giving that sort of surprise.  That makes me chary about the counts we’re getting now, especially since my hemoglobin was down yesterday, and I feel a little tired this morning for no particular reason. So I don’t quite believe that I’ll be ready for the next round either Friday or Monday, though rationally I know I probably will.  It’s strange, not being able to count on your own blood. And I don’t know whether to hope for Friday or Monday! Friday would be good, I guess—the sooner we start up again, the sooner the whole thing will be done. But I don’t really want to be thinking like that—I need to be in the flow, whatever that is, and not get ahead of myself. Having been through one cycle creates expectations about what the second one will be like, but those expectations probably aren’t reliable—so far, just about nothing has been quite the way I’d expected it to be, and I suspect that’s the only thing we can really count on in all this. I keep telling myself that Anna and I have to keep making plans, both individually and together; but we also have to know that those plans can only be provisional, that they’re subject to change at a moment’s notice (or for that matter without even that much). I think that that’s always been true, really, but it wasn’t something I’d acknowledged in the days BL (Before Leukemia). All the reading I’d ever done about contingency, ephemerality, chance, self-organization, order, chaos—it all turned out on the one hand to have been just reading, just notional understanding.  But then, on the other hand, all that reading (not the specifics but the general drift) is coming back to help me understand the situation I’m in now. Not that I feel like I understand it: it’s more that I’m trying to relax (!) and allow myself to experience it fully, whatever “it” is. “Dream as though I’ll live forever,/Live like I’ll die today,” as Zoe Lewis sings in “Going On.”

Speaking of plans, last week’s big events weren’t about me at all, though.  Friday evening was the opening of the Austin Museum of Art’s show 22 to Watch, in which Ledia has a big installation called Inland Sea—it brings water from the big, sort of boring fountain out in front of the building (AMOA has the bottom floor of an office building at  the corner of 9th and Congress downtown) and pumps it through clear PVC pipe that takes it inside the museum space and through a whole series of bending and turning pipes, then takes it back out to the fountain again. I went to the opening with Deborah Hay (the choreographer) and Rino Pizzi, and got there early enough to hear the sound of the water moving through the pipes. There were a few other pieces in the show that produced sound, too, which I enjoyed as we went on a 30-minute tour of the show led by Dana Fries-Hanson, the AMOA director.  The tour also underscored how little physical stamina I have, even after a month—by the time the tour ended I was really tired and had to sit down for a while.  (Turned out I was parked on a bench just opposite Ledia’s piece, so I got to eavesdrop a little as Dana brought various museum patrons over to see it.)

Meanwhile, Anna was in Houston at a workshop on self-relations therapy taught by Stephen Gilligan, the major proponent of self-relations theory.  She’s been interested in self-relations for some time now, and has attended several workshops as well as participating actively in an email list that draws practitioners from around the world, and she had had this Houston workshop on her calendar and in her plans for months and months. Her plan to go seemed to be in jeopardy when I had to go back into the hospital last weekend, and we were both very sad about that.  But then it turned out that by Wednesday night I felt strong enough and healthy enough for her to go, so she drove off early early Thursday morning in order to get to the site outside (in The Woodlands, unfortunately Tom Delay territory) in time for the workshop’s 9:30 start. She felt some anxiety about leaving me at home, but it was really important for her to go and I’m really delighted that my health didn’t hold her back. And of course I wasn’t alone—I had dinner with friends each night, and others came by for lunch, and friends and neighbors called to ask if I needed anything from the grocery store.  And Ledia was in and out, putting the finishing touches on her installation and then coming home to check email and grab something to eat, then going out on another errand.
So there were other kinds of milestones last week, measured not in terms of time but in terms of possibilities open and acted upon. We’d reached a point in the chemo cycle where Anna could pursue her own interests secure in the knowledge that I was well enough to manage, and we could maintain and deepen our connections with new and old friends while Ledia was bringing her creative work to fruition even as she prepared to drive out to San Francisco later this week to explore the possibilities of a more permanent move.

Thursday will mark another milestone of sorts: two months from the day Anna took me to the Emergency Room at St. David’s, where I was diagnosed and admitted to the hospital. I’m not ready to tackle the importance of that one just yet.

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

Chemotherapy begins-- even at home

Hello, dear friends.  Thanks for all the messages and good wishes that keep coming our way!  It’s been over a week since the last update, so it’s time for another one. The bottom line is that things seem to be going quite well!

I’ve now finished my first cycle/course of chemotherapy—that was Monday, Wednesday, and Friday last week.  Each of those days I received two 250cc. Doses of cytarabine—one at the Cancer Center in the morning, the second one at home in the late evening. Each dose took 3 hours to deliver, so I got to bed fairly late those days—well after midnight on Monday, a little after midnight on Wednesday, and just before midnight on Friday.

So far there haven’t been any of the really evil side effects—no nausea (yay!), no mouth-sores (also yay!), and so far not much more hair loss than I had pre-chemo.  The chemo does drive my blood counts down, so by the end of the week I was experiencing fatigue and shortness of breath because my red blood cells weren’t as plentiful as they had been.  But yesterday the doctor ordered a shot of something that boosts the production of red blood cells, and by mid-afternoon I was feeling better and stronger—so much so that I’ve scheduled myself an appointment with my trainer at the gym later this morning! I have a strong feeling that I’m going to experience muscle pain tomorrow morning: I have no muscle tone and I feel like all the weight I lost in the hospital (30 pounds) was muscle mass, leaving only skin, bone, and flab.  So we’ll be starting from not much at the gym today…

One of  last week’s chemo-adventures was that Anna and I learned to administer the home dose of chemotherapy.  Each day the nurse at the Cancer Center would send me home with a simple black fanny  Pac strapped to my waist.  In the pack were an IV bag containing the evening’s dose of cytarabine, which in turn was connected to a small pump about the size of the first transistor radio my grandmother bought me in the early 1960s; heavyweight surgical gloves to protect the hands against possible spillage of the drug—it’s *bad* for the skin; a syringe loaded with 10cc. Of saline solution  and two syringes with 55cc. Each of heparin—the syringes were for cleaning the “port” in my PortOCath after the IV was finished.  Oh, and I forgot the alcohol swabs for wiping the port down before inserting the syringes, and a little pink plastic needle to seal the tube from the IV bag at the end, to prevent any spillage.  Lots o’ stuff!

The IV was connected to my PortOCath before I left the Cancer Center, so we didn’t have to deal with that aspect—all I had to do get things started in the evening was to press two buttons on the pump and open two little valves, one on the IV line and one on my PortOCath.  That started the IV running, and I could hear a reassuring little whirring sound as the pump did its thing.  When it was finished, the pump made a sound sort of like a Parisian ambulance (which was very different from the infuriated noise it made on Monday night when I tried to restart it without opening those valves first; I had to restart it because I had forgotten to take my anti-nausea pill an hour ahead of time…).  When the IV was done and the alarm had sounded, Anna disconnected me, using the instructions she had carefully written down at the Cancer Center as the nurse demonstrated the process.  (There was a great moment of theater when Anna did the disconnect routine for the first time at the Cancer Center—announcing dramatically at the end, “Well, I didn’t kill him!” which had the other patients in hysterics and the nurses a little startled…)

A number of friends came by to visit during the week, and on Saturday night we even had a small impromptu dinner with a few people other than us.  These visits are terrific—starting to feel like we’re getting our life back.  At the same time it’s coming home to me that my life-- *our* life—has changed irrevocably, which is at once a daunting recognition and an opportunity.  So Anna and I are talking a lot about what really matters to us and enjoying each other’s company.  And one of the things that matters to us—it’s incredibly important—is staying connected with our friends.  I don’t recommend leukemia as a method for establishing and sustaining those connections (just like I don’t recommend it as a weight-loss program), but I wouldn’t trade the connection.  That sense of connectedness has been a great gift from all of you, and we thank you very, very much.

And that’s the news from this side of Lake Woebegone, where—you know the rest.

If you’re in Austin, please come and visit! Just give us a call to make sure we’re not sitting in the doctor’s office or something.  

Much love,
John, Anna, and Dillon

After a week at home

Hi, all. Sorry for the long silence since our last update. I’ve been at home since the 22d, enjoying it very much—spending time with Anna and various friends, going out to eat (including a couple of really wonderful meals), resting… I’ve felt stronger each day, able to do more before having to rest, able to sit up longer to eat and talk and laugh and read.

Not that the week was entirely free of medical events.  On Wednesday I had yet another bone marrow biopsy, this time as an outpatient at the Southwestern Regional Cancer Center, which is, fortunately less than a mile from our house. On Thursday I went back to the hospital as an outpatient, to have a device unfortunately named a PortOCath implanted—a catheter into which chemotherapy and other drugs can flow and from which blood samples can be drawn; and on Friday Dr. Tucker called with the welcome news that I’m still in “complete remission,” no leukemic cells in evidence.

This morning began a whole new phase of this adventure: consolidation chemotherapy, on an outpatient basis (yay!).  We arrived dutifully at 8:15 for our 8:30 appointment.  A little before 9:00 a nurse came and got me and took me to the room where they draw blood samples, then led me back to the waiting area.  Some undetermined amount of time later—felt like forever, was probably something like 15 or 20 minutes—another nurse came and ushered me into what I think they call the Infusion Room—a large, open room with hardwood floors (!) and 16 big soft leather reclining chairs.  She sat me down, and very quickly realized we hadn’t received even rudimentary patient education in what was about to happen; so, patiently, she described the process, explained the potential side-effects (ugh), etc., etc.  She gave me an anti-nausea drug, then, at about 10:30, finally started the chemo going.  Anna sat in the next chair with her laptop, working hard on a major presentation in between calls to our nutritionist and listening to explanations of the chemotherapy; an hour or so later she went to meet Diane, her assistant, for lunch, then came back with a burger, fries, and milkshake for me (still have those high caloric requirements, you know!). And at 1:15 the chemo was done, and a few minutes later we headed for home.

Tonight I’ll have my second dose of the day—a home health nurse will come to the house to start it at 10:30 PM (12 hours after the first dose started) and clean everything up when it’s done at 1:15 or 1:30 AM…

We repeat the process on Wednesday and again on Friday, but there will be some differences.  The IV will take only 90 minutes instead of the nearly 3 hours it took today, and hopefully it will start well before 10:30 so that the second dose can start and end earlier too.  Also, they’ll be sending me home with my very own bag of chemo and an IV pump to administer it, all in a convenient fanny pack.  The pump’s about the size of one of the early transistor radios, and there are only two buttons that I need to know about: a start/stop toggle and an on/off switch, which are on different rows and even differently shaped so I can tell them apart.  We’ll have to learn how to flush the catheter with saline solution and Heparin (to clean it and keep it from clogging), using pre-loaded syringes that they’ll also send home with us, and which they’ll mark so I can tell them apart by touch.

So… off we go, into the wild blue yonder—I’ll have four of these cycles, at intervals of three or four weeks depending on how well I tolerate the high dosage. And of course they’ll be doing blood counts (for each cycle there will be a nadir when my white- and red blood counts and my platelet levels bottom out, then they’ll come back up to normal levels); and I have a funny feeling there’ll be more bone marrow tests and a host of other things.  I’ll probably whine about all of it, but I’m actually enormously grateful that the medicines and technologies have reached a state of development that allows chemotherapy as an outpatient (even at home!) and gives me a fighting chance.  And of course I’m grateful, too, for the love and good wishes that keeping coming to me from Anna and Dillon—that’s such vital energy!

Many, many thanks, and much, much love.

More to come.

John, Anna, and Dillon

P.S. For those of you who are in Austin—we welcome visitors! (We’ll need to be careful when my counts bottom out, but other than that---).  So please call us!