Galling

On Saturday, April 16, I went to sleep back on the sixth floor of the hospital. Someone had written "Welcome back!" on the whiteboard. Thanks, I guess. I do appreciate the welcome and, if I have to be in the hospital, I'm glad it's with familiar and highly competent staff.

On Sunday, we learn that I have c diff — very common among hospital patients and others taking heavy antibiotics — and I start some new antibiotic. A sharp pain under my right lung suggested that I might also have a gall bladder problem, which could also explain at least some of the recurring nausea and vomiting. During Saturday and Sunday night, the pain was constant and caused me to ask for relief. During the day, it only hurt when I breathed deeply.

My attending physician tells me I have an ultrasound scheduled for some time on Monday, and I should not eat for six hours before the exam. What time is the exam? Can't say, so don't eat after midnight, to play it safe. Well, I'm not usually eating after 8:00 pm, so this should be fine.

Sunday night into Monday is a second straight bad night of sleep. They're pumping me full of saline solution, even though I am no longer dehydrated, so I have to get up every 1 to 2 hours to pee and/or have vitals checked and/or have blood drawn. "Welcome back!" (The Thursday night before I got readmitted to the hospital was the very first post-hospital night that I had slept all the way through.)

Monday morning comes. No breakfast, because eating or drinking would interfere with the ultrasound. Which is when, again? They can't say. Late in the morning I learn that my exam is scheduled for 2:00, which means I am going to go from 7:00 p.m. Sunday to 3:00 p.m. Monday (if I'm lucky) — 20 hours — without eating or drinking, because they couldn't give me any idea of when my exam would be. I express my unhappiness, but what can they do? There are 15 people ahead of me. The cable guy and the appliance repair guy can at least pin it down to morning or afternoon, which allows a little planning. And you can eat while you're waiting.

Transport shows up to take me to the ultrasound exam (early!), and my mom and I head down. I get rolled into one of two outpatient ultrasound rooms, as the other outpatient room and an inpatient room seem to be occupied. The exam takes about 15 minutes. At the end, the tech tells us she called Transport about 10 minutes ago, because they've been running late today and she wanted to get a head start on the waiting. (They're running late today?)

Forty minutes later, my mom wanders back to where the tech headed when she was done with the exam. Several techs are sitting there, at least a couple of them waiting for Transport to clear patients out of their rooms so that they can get another patient down for an exam. It is clear that they, like the other techs and the nurses, are consistently frustrated by how long it takes Transport to get patients where they belong. In this case, transportation may explain why it takes so long to get through 15 patients — the exams are quick, but it takes a long time to get the patients out of the exam rooms.

Back in my room, I finally get to eat and drink. A little later, the report: I do have something going on with my gallbladder, though I'm not clear what — stones, infection, maybe both. Another drug, and a followup appointment on Thursday. Then we're on the way home.

Back up on Thursday. Blood work. The phlebotomist is excellent — a painless stick, pride in her work. A meeting with a surgeon, whose initial inclination upon hearing my symptoms was, "This is a no brainer." (Take out the gallbladder.) Now, examining me, he rethinks. The pain went away after two days, and I'm having no other symptoms. I do have gallstones, and they could bring the pain and illness back at any time, but there's no rush. With yet another new medication, and some dietary adjustments, I might be able to shrink the stones and avoid surgery, at least for now when I have a lot of other things going on medically. A dye scan will provide more information.

Every morning, I take these pills, plus a multivitamin. Same
in the evening, minus the multivitamin and the four small
pills on the right. The number of medications doubled in the
past week.

I ask the resident (the surgeon is gone) whether the gallstones are related to rest of the recent assault on my body. He doesn't think so, which makes them just a cruel coincidence, like my medical plate isn't already full enough. How galling!

At my next appointment on Thursday, with a transplant nurse practitioner, I learn that my blood counts are really good. My platelets are higher than they have been since before I was diagnosed with aplastic anemia, six-plus years ago, and are now fully in the normal range. Hemoglobin is also better than it has been since chemo started in January. I ask about the gallstones. Her experience, contrary to the opinion of the resident, is that stem cell transplant patients have more gallbladder issues than the average patient. There's chemo, immunosuppression, changes in diet, rapid weight loss — a lot of reasons for the body to get out of balance. This makes me feel slightly less aggrieved.

Since Monday, I've been feeling pretty good. I've been adding short jogs (about a minute for every four minutes of walking) to my morning outings, and my appetite has been good. I have been enjoying the birds and flowers, both while out on my jog/walks and through our windows.

I head back up to meet with my doctor this Monday (April 25), and I have a radioactive dye scan scheduled locally later this week to have a closer look at my gallbladder, to make a more informed surgery decision. If there's no surgery, I'll be able to have the Hickman Triple Lumen removed from my chest, which would be a nice treat. No more line flushing, no more plastic-bag-and-tape jobs before every shower — it would be another step toward normal.

(Thanks to Jan for the title.)

Brief Update

I came back from the hospital yesterday (Monday). We found two explanations for my recurring intestinal insurrections: an intestinal infection called Clostridium difficile ("c diff") and something (infection?) going on with my gallbladder. Either one could explain the symptoms I have been having. Maybe they have been taking turns!


I now have medications for each condition, and a followup appointment on Thursday to discuss the fate of my gallbladder. 

Nice surprise from my stay: My room had a fully functioning shower — hot water and water pressure.

No surprise: Spent 50 minutes waiting for transport after my ultrasound. Probably would have been longer had one of the techs not made a phone call after 40.

More later. Feeling pretty good now.

Failing to be Boring

Since being pronounced the "most boring patient" just under two weeks ago, I have had three separate bouts of nausea+vomiting+diarrhea. Last night, after a really good day, during which I even mixed a little jogging into my morning walk, was the most draining (literally and figuratively) of the three. Around 2:00 a.m., I started having a new additional symptom — shakes and chills — so we called my doctor.

We discussed going to the local ER vs. driving up to Chicago. My past experiences with ERs is that you often wait a very long time to be seen, unless you're bleeding heavily. I thought the odds were good that I could get to Chicago in less time than it would take to be seen locally, and then I would still need to be transported to Chicago. The doctor called the ER in Chicago so that they were expecting me. Jan called our friend Bonnie to ride up with us, and the two of them split the driving.

We checked into the ER in Chicago around 5:00 a.m. Initially we were given the impression that they would start some treatments in the ER (like IV drips to re-hydrate me and provide additional antibiotics) and that I would shortly be admitted back to the sixth floor. As the morning dragged on, we learned that there was not currently an available bed up on the floor I would be heading to. The ER nurse recounted a cautionary tale of a patient warehoused in the ER for five days while waiting for a room.

Around 7:00, the blood cancer fellow comes by doing his rounds. He tells me there will be a bunch tests to look for infection, but I might also get scoped, from both ends. And don't eat anything for now, because the GI doc may decide now is a good time to take a peek (I'm already empty). The fellow has blood test results from blood taken shortly after my arrival. Good counts! My platelets are at 130, which is higher than they have been since I was diagnosed with aplastic anemia six-plus years ago. My white counts are also very good, with hemoglobin lagging but still good enough.

There's less privacy in the ER than there is on the blood cancer floor, where each patient gets his or her own room. The ER is more similar to a cube farm. Each "room" is a (fairly large) curtained space, which means you hear what's happening on nearby beds. There's the woman from Puerto Rico who can't breathe or communicate in English. (Fortunately, at least one of the doctors speaks passable Spanish.) There's the man with some excruciating pain, leading to over an hour of "ohhh... ohhh... ohhh... OHHH... ohhh... oh, God... ohhh... ohhh... ohhh... ohhh... Jesus!... ohhh... ohhh...." It could be the soundtrack for a particularly unimaginative porn flick. After an hour, he receives some pain relief, and a few hours later, I see him walking out a much happier man.

The attending comes down to visit. As he puts it: the number one suspect for my symptoms is an infection, the number two suspect is an infection, and the number three suspect is an infection. So they will initially focus their attention on getting some cultures (blood, stool) to look for infection. There are several types of infection, not based in the intestines, that can cause the on-again off-again pattern I have been experiencing. Or, it could be something intestinal. He does not think it is graft-vs-host disease, because of the pattern.

I get cleared to eat, since the attending does not think any scoping is in order at this time. I start thinking about what I would order of the menu that I have memorized from my previous stay, but it turns out to be a waste of time. In the ER, they decide what you want to eat and when. For a patient in the hospital because of nausea and vomiting, this seems like an approach sure to fail to supply adequate nutrition. Of the lunch that is delivered, the only food I feel like eating is the tomato soup and the crackers. I supplement later with more crackers and some ginger ale.

Back to privacy: I have an 8-foot curtain at the front of my space. Unfortunately, the front opening is 10 feet wide, leaving me 20% exposed when peeing into a handheld urinal. Oh, well.

I take a nap. The mattress is nice and firm, but there are no pillows in the ER. They earlier brought me some extra blankets, folded up to form a "pillow" slightly softer than a log.

At 5:30, my dinner  arrives! They have decided I would like roast turkey, dressing, french fries,  cooked carrots, salad, applesauce, milk, and decaf coffee. I hope they're right... but they're mostly wrong. I have a little turkey, a little dressing, a few fries, a little applesauce. Then I hear I've got a room to move into, so I stop eating, figuring I can order what I want when I get up there.

At 7:00 p.m., I get transported to my old stomping grounds. It's one of the medium-sized rooms -- not palatial like my last one, not claustrophobic like one I spent a few weeks in. It will be fine for what I hope is a stay lasting only several days.

My nurse and NSA remember me from my earlier nine-week stay. Around 7:30, I place an order for some bland food: baked fish, plain noodles, canned pears, ginger ale. A mere 2 hours later, my order arrives. I pass on the fish, since I don't know that it hasn't been floating around the hospital for two hours. At least the noodles with parmesan hit the spot.

And then, after an intake interview with nurse and my nighttime meds, it's time for bed.

This Doesn't Always End Well

Around the time we were preparing for me to leave the hospital, we learned that someone in town was following a somewhat parallel path. Her son was a teammate of Paul's on the high school soccer team, so we knew each other from the sidelines. She was diagnosed a week before I was. Like me, she was being treated in Chicago. If we had been in the same hospital, we would have been on the same corridor.

We spoke once by phone, after I was home and a few weeks before she was going to receive her own cells back again. Her treatments had been hard on her — multiple rounds of chemo and radiation. The week after her transplant, we learned from her husband she was doing OK but was tired and had a fever. A couple of weeks ago, she was doing better.

She died earlier this week. Wake and mass tomorrow.

I Am Woman

The first half of this week featured a sequel to last week's intestinal distress. Like most sequels, it didn't live up to the original, at least in intensity. Also, it was too long. Instead of all the symptoms combining on a single day, this time each symptom got its own day: Diarrhea Monday, Upchuck Tuesday, Nausea Wednesday. Di and Chuck just mailed it in, if you ask me. In Act Three, however, Nausea, merely a supporting player in the original, stole the show. I was so impressed, I had to go to bed around 6:00 pm and not get up until this morning.

I checked in with my doctor on Tuesday. As long as these symptoms come and go, without fever, and not too often, we (I) will just ride them out. If the symptoms persist, I'll get scoped. Colonoscopy, sigmoidoscopy... I don't know. Seems viral for now, but it could be a manifestation of graft-vs-host disease.

My doctor also had the second round of results from my bone marrow biopsy. Round One was that I have strong numbers of all the right kinds of blood cells in my marrow. Round Two is that the blood cells are more than 99% female — XX, not XY. (Or, as Sen. John "Not Meant To Be Factual" Kyl of Arizona would put it, my blood cells are more than 99% male.)

Since my donor was my sister, this is excellent news. The less host (XY) blood there is, the more successful the transplant has been, and the less chance there is for any leukemia to have made it through the treatment.

The final result we're waiting for is whether there are any cells with "deletion 7": chromosome 7 missing some genetic material. My leukemic cells had this marker, so they will be relatively easy to find if any have made it. I should find out Monday.

Until then, I'm very happy that my blood is (almost) all woman. Hear me roar.

D+36 -- What Could Possibly Go Wrong? (Part 1)

The two main risks for a stem cell transplant patient, after transplant, are infections and graft-vs-host disease (GVHD). The latter is when the new immune system (the graft) starts to attack one or more organs of the old body (the host). More on GVHD later, and I hope it's not from personal experience.

To minimize the chances of GVHD, I take a medication that suppresses the activity of my new immune system, which isn't yet fully functional anyway. My white blood cell counts are lower than normal, which is normal at this point. The combination of low counts and medication makes me exceptionally vulnerable to infection. A bacterium, fungal spore, or virus that a healthy person would typically dispatch without breaking a sweat — without even noticing — can now easily and quickly make me sweat. And spew. And squirt. (Feel free to take this as a warning to proceed at your own risk.)

A couple of weeks ago, I had a mild sore throat. Neither Jan nor Paul were sick. Based on the symptoms, my doctor felt it was likely a virus and, as long as I didn't develop a fever, it was safe to ride it out. It went away after a few days.

This past Wednesday, after a really good Tuesday, I wake up anticipating another really good day. It starts well enough. I get up, have a bowl of cereal (first breakfast), do a little work. My belly is slightly gurgly, and I am a little queasy.

As I am taking my morning medications, I choke on one of the pills. The choking leads to gagging, which leads to my first post-transplant upchuck. It feels more like a gag reflex than something more serious, but it's reason enough to call my doctor. (The rule for transplant patients is, everything is reason enough to call the doctor -- a splinter, a small cough, a tiny rash, a reddish eye, a mild earache...)

Is anyone else in the family sick? No? She tells me to keep hydrated and watch for fever. If I can't stay hydrated, or if I develop a fever, she wants me back up at the clinic, and possibly readmitted. I'm not really in the mood for eating, but I can drink, and I do. I tell Jan what's going on, and she asks for regular updates.

Meanwhile, my body is doing its best to dehydrate me. It is the Day of Diarrhea. I do not spend the whole day on the toilet, but there are quite a few increasingly fluid trips. Between trips, my intestines are occasionally at peace and sometimes amusingly noisy — gurgles, gloops, rumbles, blips. And sometimes it feels like miniature dolphins are playing tag inside Joe's Intestinal Fun House. And that's usually when it's time to make another trip to the bathroom. I also keep a bucket with me.

Lunch is a piece of toast. Then I take a nap, during which Jan can't reach me, so she comes home to work and keep an eye on me.

In the afternoon, I'm feeling that the worst is over. The diarrhea seems to have played itself out — could there be any more in there? My parents call, knowing that I was ill earlier in the day, wanting some peace of mind before they go out to a play. I reassure them, honestly.

As soon as I hang up, the dolphins start chasing each other again, but they're headed the other way. And my bucket's in the other room! Paul, home from school, runs into the living room (my "office") with the bucket and gets out as fast as he can.

This episode is more convincing than the morning's, which I could pass off as a gag reflex. This one is more productive, more gripping, longer lasting — everything a vomiting episode would want to be, really.

I'm feeling a little better, as one often does post-purge. I don't have a fever. Still, I'm clearly not well. Jan has some race commitments at the end of the day, and it turns out Paul has a movie to watch for school at roughly the same time. We put out a couple of calls for a "sitter," and quickly find a willing tandem: Robert, when he's done with soccer practice, and Cathy in case Robert is late.

After Robert arrives, I make some white rice. I have been drinking all day, but the only food I've had is cereal (temporarily) and toast (also temporarily). I sit down to some plain rice, while Robert gets a can of Guinness for dinner.

After two bites of rice, the dolphins are at play again. I'm off to the bathroom, with my bucket. Which is a good thing, because I'm already retching before I reach the bathroom. Then I'm on the toilet, forcefully emptying my digestive tract from both ends, simultaneously. (Why is that even possible? Wouldn't that create a vacuum in the middle?) All the drinking has its effect, so I'm peeing at the same time, and the retching is so powerful that my eyes are watering. I'm dehydrating through four types of orifice at once! I dub this accomplishment, The Quad. Rarely attempted, never enjoyed.

(Maybe if I had drunk more heavily in college, this experience would have been less novel. No regrets there.)

The Quad marks the high/low point of this infection. The rest of Robert's visit is uneventful, even pleasant. (Thanks, Robert!) During the night, I run a low fever but not above the call-the-doctor threshold. The next day, I'm still queasy but everything stays down. Friday is a good day, Saturday better.

Time to get back to boring.

D+31 — "Our Most Boring Patient"

My mom and I drive up for my regular Monday appointment. Mom takes the lead in the parking spot contest, finding a space two spots from the exit we take to reach the clinic. And one of those spots is reserved for the handicapped, so it's going to be hard to do bettter.

On the elevator ride up to the appointment, two young men get on, wearing doctor's jackets. I hesitate to say they are doctors, because they appear, to my mom and me, to be in high school. That makes me feel old.

I get my blood drawn at Phlebotomy, as it should be. I get my dressing and caps changed at Apheresis. The fellow declares me their "most boring patient." Fantastic!

The doctor tells me I'm doing great — all the counts are reasonable. Why am I doing so well? At least in part, because I was admitted in good shape, and because I'm "so young." (Thank you, Doctor! I needed that.)

We won't know the bone marrow results until tomorrow (hoping for lots of blood cells), later in the week (hoping for entirely Mara's cells), and later next week (hoping for no signs of leukemia). But the doctor thinks it likely there will be good numbers all around.

To go with the probable good news, I get some certain good news:

• I don't need to go back for two weeks.
• I can drink alcohol, in moderation. (Since I get light-headed on a full glass of beer, this will not be a hardship.)

I'll drink to that!

D+28 — Blood, Breath, and Bone

(Friday)

Lauren left Wednesday morning, and my mom came in Wednesday evening, the final leg of the Seeley Family Relay — dad, Lauren, mom, each coming in from the Boston area.

On Friday, my mom and I drove up for a bunch of tests: blood work, pulmonary function, and a bone marrow biopsy.

I check in at the clinic, and they send me to Apheresis for my blood work. When I get there, they say I have to go to Phlebotomy. (Apheresis draws from my lines, Phlebotomy from my arm.) The first clinic blood draw was faulty, because they drew from my line and got invalid Prograf levels. The second time I had blood drawn, I was sent to Apheresis and then (correctly) redirected to Phlebotomy. The Prograf level was measured fine, but they had to redraw for some other tests because a sample clotted. Anyway, I go off to Phlebotomy without a fuss. Maybe the third time will be the charm.

When I arrive at Phlebotomy, the clerk tells me I need to have my blood drawn at Apheresis.  I tell her I'm sure I am supposed to have the blood drawn from my arm, and she accepts that. (There's no downside to the arm stick, except the arm stick, whereas drawing from the line can distort test results.)

Once I'm in the Phlebotomy bloodletting room, I start reading the appointment sheet I was handed when I checked in. There's a note saying, "Blood must be drawn at Apheresis!", so I start to doubt my decision to insist on Phletobomy. I page my doctor, who (as always) calls back within minutes. I tell her there is some confusion about where I should have my blood drawn. She is not surprised. Despite the note directing me to Apheresis, she wants the blood drawn at Phlebotomy, because one of the tests is a Prograf level. Uh oh.

I don't recall hearing we were testing my Prograf level, so I took my Prograf in the morning, which invalidates the results. My doctor tells me it no longer matters where they draw my blood, so I have it drawn where I am. I will get a Prograf level when I return on Monday.

Then I'm off to the Pulmonary Function Test. I had one of these during my hospitalization, pre-transplant, as a benchmark, and the goal is to compare then to now. I sit in a cylindrical booth while the tech explains what's going to happen. There are several different tests, repeated a few times. I clamp my mouth around a breathing tube and obey instructions. For a couple of the tests, the booth is sealed around me -- combined with the tube in my mouth, I feel slightly claustrophobic. It's a good thing the booth has transparent sides.

The first time I took this battery of tests, the tech used a drill sergeant approach. She would tell me to breathe in deeply and then breathe out as hard and as long as I can. Then she would start yelling, "Keep going! More! More! More!", even as I was sure I had breathed out every whiff and maybe a wisp of lung. Then we would do it again. Each time, I felt like I had let her down because I stopped breathing out before she stopped yelling at me. (It's not a mean yell, and I have heard from others that this is a common technique for getting people to maximize their scores on these tests.)

Today's tech has a much more relaxed style. He tells me what we are going to do and then calmly directs me through each test. He has the monitor turned so that I can see my own data being recorded, and I see that even when I think I can squeeze no more from my lungs, the numbers are still climbing. So I keep exhaling. The biofeedback approach, intentional or not, suits me better than being yelled at.

I have no idea how today's numbers compare to my earlier numbers, but I feel like my lungs are fully functional. On my way back out to the waiting room, I hear the tech from my first test battery, behind closed doors, barking, "More! More! Keep going!"

Off for the biopsy, my fourth in 2011. Sadly for my insurance company, there is no "every fourth one free" policy. I'm fairly relaxed, because these biopsies have not been too uncomfortable. The woman doing the drilling this time has little trouble getting through for the marrow pull. In the past, there have been a couple of short painful pulls. This first pull is surprisingly painful and feels like it is drawing marrow from my hip, my thigh, my shin, and my ankle. I know this is not physically the case, since even though the hip bone is connected to the thigh bone, and so on, their marrows are not connected. The second pull is less painful. And each of the next four — I had previously consented to supply marrow for research, so they're collecting much more than usual — is less painful than the one before.

Then it's on to extracting a core sample of bone, in the same numbed spot. She spends some time finding just the right place and angle, but once she settles on one, she has pulled out a sample — extra large, again for research —before I realize that she's done.

I'm feeling good. On Monday, all these test results will let me know if I'm doing as well as I think I am.