D+25 -- I Have a Drinking Problem

Lauren is in town for a couple of days, cooking up some great food — Norwegian rolls, Spanish chicken stew, fresh lemon-limeade, strawberry-blackberry pie — and driving up with me yesterday (Monday) for my second check-up back at the clinic.

I have not yet needed to be driven to Chicago, physically, but I do need to have a second driver in the car. It is a long enough drive, and I can get sick so quickly, that I could start a drive feeling fine and not be able to complete it. I do some of the driving, but I also take naps (while not driving).

On Monday, I was a little extra draggy — didn't go for a walk, got winded going up the stairs again, felt especially lightheaded when standing up. I predicted that my hemoglobin levels would be low when I got the blood test results in the afternoon.

My family and I are becoming very familiar with the stretch of I-57 between Champaign and Chicago. I think we're even seeing the same hawks sitting on the same fence posts on our various trips.

Whenever I have parked up at the clinic, I have had to go to the very top of the garage before finding a spot. My dad has always found a spot on or near the first deck. Lauren is currently in first place, after finding a spot about 8 cars in from the exit we take to walk across the street to the clinic.

I check in for my appointment and get sent over to Apheresis for my blood draw. Apheresis takes vitals and then sends me over to a different lab, because my doctor wants to make sure the Prograf level test is done on blood drawn from my arm. (My blood pressure is 100/60, which is low for me.) Then it's back to wait for my appointment.

I get called in at 3:00, half an hour before my appointment. Maybe we're going to get out of here sooner than expected. Some questions from a nurse, then waiting in the exam room.

I feel something on my tongue. Like a small piece of food, but I haven't eaten in hours. I pick it off my tongue and put it on a tissue. It's the size of a split pea, mostly yellowish, but with fine streaks of black or dark brown. Then I feel more, almost all smaller than the first. Some look like single short hairs, an eighth of an inch long. Some are just pale little yellow chunks. I gather them on a couple of small tissues to show the doctor, but I know what it is.

Ever since I had the Black Tongue, the flora of my mouth has been out of whack. Brushing my teeth and rinsing with mouthwash after every meal helps. Brushing the tongue is very helpful, but I can't brush all the way to the back of my tongue due to the gag reflex, and that is where things grow — on my tongue — during the day. For some reason, the party dies down at night. At times during the day, I can feel a bumper crop of crap back there, but I can't get rid of it.

Now, waiting for the doctor, my tongue is shedding. It's disgusting. But good!

The fellow comes in. I proudly show him my harvest of whatever it is that's coming off my tongue. He appreciates the visuals and gives me permission  to throw them out. He has preliminary blood test results for me. Mostly reasonable, especially the hemoglobin, so my prediction was wrong. My creatinine level is higher than desired, an indication that I am dehydrated and that my kidneys are having some trouble. He floats the idea that I might get a rehydration IV before leaving and/or receive one at home in the next few days. He leaves. More waiting, more shedding.

Around 4:30, my doctor comes in. She wants to know how often I'm peeing. I think every four hours is pretty normal, but it's not enough. She wants me drinking enough that I'm peeing every one to two hours. Also, no tea, not even herbal, which has been a staple of my days. Even herbal teas can dehydrate you. So, I have really had two drinking problems: not drinking enough, and some of what I'm drinking being the wrong stuff.

My doctor's solution to the dehydration problem — drink more of the right stuff — illustrates one of the things I like about her. She seems to be firmly in the "first, do no harm" camp of medicine, where other doctors seem to think first what medical intervention will help — what pill, what procedure. My doctor, though not averse to prescribing procedures and pills, respects the body's ability to heal itself, given a little help.

After my appointment, I have to get some blood redrawn, because the sample that provided the preliminary good news about blood counts turned out to have clotted, rendering its results invalid. This means I leave the clinic not knowing my blood counts or my Prograf levels.

Today (Tuesday), is a day of heavy drinking and frequent trips to the bathroom. I check in with my doctor at the end of the day, having not heard anything. As I assumed, no news is good news. The second blood draw yielded valid and solid blood counts. My Prograf level is a little higher than desired, which probably explains the elevated creatinine counts. She adjusts my dosage.

I'm headed back on Friday for a pulmonary function test and the first bone marrow biopsy since my transplant.

But right now, I have to go pee.

D+22 — One-Week Anniversary of Being Home

A decent night's sleep in my wonderful bed, with my wonderful wife. Even without the vitals checks, blood draws, and medication deliveries, I still wake more often than I used to during the night. I might still be adjusting. Last night I awoke three hours after going to sleep, lay awake for about an hour, awoke again after three more hours, and then got another hour or so of sleep. I'll take it.

It is quite cold this morning for my walk. 25 degrees and windy. The only skin that's going to be exposed is around my eyes and nose, so that is where I apply sunscreen. Overkill, in March, early in the morning? Maybe. But the Black Book keeps saying you can't be too careful, so I try to be more careful than I need to be. It's working so far.

It feels like winter, but it looks and sounds like spring: a lot of crocuses, a few daffodils, and many more bulbs in leaf but not yet in flower; chickadees, finches, titmice, cardinals, robins, a woodpecker.

I'm feeling (a little) stronger every day. Yesterday, I forgot to use the mountaineering approach to the stairs and didn't pay for it when I got to the top. I feel that I'm walking faster than a few days ago. I think I might even be able to jog a little, so I give it a try. I am disappointed, but not surprised, that jogging is too tiring. I am surprised that it only took 5 steps to determine that. Lovely day for a walk, isn't it? Especially a walk accompanied by castanets, which are actually the three nibs of my Hickman Triple Lumen, hanging from my chest and clacking against each other with every other step.

The day is uneventful. (Yay!) Breakfast; meds, temp (normal), and weight (steady, but 15 pounds less than when I entered the hospital); some race site work; lunch; a nap; more site work; some basketball (watching, not playing); dinner; U.S. v Argentina (1-1!); a little work on taxes (boo!); meds and temp (normal); bed (yay!).

D+19 — No News Is Good News

There is nothing much to report from the last couple of days. Win!

Both mornings have started with an early morning walk, trying to beat the sun. (More on my need to have something approaching a vampire's fear of the sun in a later post.) Then breakfast, some work, a nap either before or after lunch, some more work, another nap, dinner.

Yesterday, I walked by myself. On the path around the pond in Mattis Park, as I was approaching the footbridge, I saw a hawk sitting on the railing. It kept peering down over the railing and then back at me, and it allowed me to get within 10 feet. I rued my failure to bring a camera. It finally lit out for a nearby tree. As I crossed the bridge, two squirrels bolted from under the bridge to a different tree, so I think I spoiled the hawk's breakfast plans. (Sorry, hawk!) (You're welcome, squirrels!)

Today, I walked with Jan. This is a great small pleasure, for both of us, though I do ask her to slow down occasionally. My exact words are, "Slow down, Sparky." This deprives her, she jokes, of the satisfaction of walking faster than a man recovering from treatment for leukemia. Those who know Jan know that she's usually multitasking and doing whatever she's doing at a quick pace — that's how she gets so much done. So it runs against form for her to stroll, even when we are walking somewhere in no particular hurry, and the current situation is not the first time I have tried to rein Sparky in while we're walking or when she drops something in the kitchen.

I have learned that I should take naps before they take me. Late in the afternoon yesterday, I headed upstairs to get something. Going up stairs dispels any illusion I may have that I'm back to normal. I have a muscle memory for how quickly I go upstairs, and I have had to unlearn that. First, I slowed the pace. That was not enough. Now, I climb them using the technique I learned when climbing Mt. Rainier with my dad, just out of high school — when the air gets especially thin, you take a few steps, rest; take a few step, rest.

When I got upstairs and into the bedroom, whatever my mission was got deprioritized so that I could lie down for a brief rest. That was when the nap saw its chance and ambushed me, dragging me off into Sleepytime Woods for an apparently much-needed rest.

Today, enlightened, I took a brief nap after lunch and a longer one before dinner. So take that, naps. You're not the boss of me.

Around midday today, I had a return visit from the home care nurse, to show me how to flush the lines on my Hickman Triple Lumen. She was supposed to do that on Monday, but the supplies had not been delivered. Even if they had been, the lesson would not have been conducted, because the supply order from the hospital had been incomplete. When I was back at the clinic on Monday, the nurse said she would get the full order sent down. Yesterday morning, I received a box of supplies, but they were the original incomplete order. Late in the afternoon, I received a second box of supplies, containing the full order. So I now have everything I need, and twice as much as I need when it comes to heparin and alcohol wipes. Jeff tells me the alcohol wipes are useful for getting a fire started in the woods when it's wet, so that would be useful, except that's not a situation I have found myself in very often. I can't think of any use for extra heparin that wouldn't be criminal.

Anyway, supplies on hand, I had my lesson on line flushing. Wipe the nib vigorously for 30 seconds with the swab (and then don't let it touch anything to I'm done), take the cap off the 10cc saline syringe, push out the air bubble, attach the syringe, release the line clamp, squeeze in the saline, take the cap off the 5cc Heparin syringe, squeeze out the air bubble, detach the saline syringe, attach the heparin, squeeze it in, detach it, close the line clamp. Repeat for the other two lines. To keep track of which I have done, take advantage of the three different line end colors and go in this order: red, white, blue.

At the hospital, they used a different wipe, which one nurse said was better than the alcohol wipes. Every time I straightened up my room during my stay, I had another 3 or 6 or 8 of these stronger wipes lying around, which I stored in a plastic bag, which came home with me. So I have a good supply of them, although they are so good at cleaning that you need to wear gloves, which I don't have yet. Maybe I'll snag some on my next trip up.

As I push the plunger on the syringe, I can't help picturing a junkie, since that's the only image I have of people using a syringe. I have to do this every other day for at least a couple more weeks, so I'm sure I'll come to feel less like a junkie over time.

Fantastic dinner tonight, courtesy of our friend Mary, with a big assist from her dad on the roast beef. I had had the exact same combination once in the hospital: roast beef, mashed potatoes, gravy, broccoli, brownie. It was one of the better meal options there, but tonight's was a completely different experience, and only slightly because I was sitting at my own dining table. Flavorful roast beef, real mashed potatoes, a gravy that you had to mix because it separated, chewy brownies... Mmmmm....

= = =

Update (translation: I forgot something): Tuesday morning, I received a call from my doctor. "I need to talk to you about your Prograf levels." Hmm. Could be minor, such as I need to take a little more or a little less. Or, something else...

I get to see (hear) the medical sleuth at work.

"Are you sure you did not take you Prograf yesterday morning before coming to the clinic?" I am as certain as I can be, although that's only about 90% certain, since my short-term memory isn't great. The doctor says it's chemo brain -- let's go with that.

"Where did you have your blood drawn?" There are two choices on my clinic's floor if you are having blood drawn. I had been directed to the apheresis lab, which I'm guessing is the more sophisticated of the two, and that is where I had gone.

"How did they draw your blood?" From one of my lines.
"For all of the blood?" Yes.

Eureka! (She didn't say that.) Prograf levels cannot be tested in blood drawn through the line — something about Prograf sticking to or being absorbed by the line over time and then being released from the line when you draw blood through it, greatly inflating the result. My doctor is not happy that the lab tech did not draw my blood correctly, but relieved that I'm not in danger. If I truly had the level reported by the test, my doctor tells me, I would be in kidney failure. Since I'm feeling well, and had my Prograf level tested shortly before discharge, she feels comfortable waiting until my Monday appointment.

D+17 -- Excellent Report Card

In the morning, I receive a visit from a local home care nurse. There is some paperwork, and then the plan is for the nurse to show me how to flush my lines. However, the supplies have not been delivered to my house, so she can't do it. It's not a medical problem, because I'm headed back to Chicago for my first outpatient appointment after release from the hospital today, and they can do the flushing there.

The nurse also notes that the supplies ordered for my flushes are missing a typical component, the syringes of saline. I add that to my list of questions for the doctor this afternoon.

At noon, my father and I drive back to Chicago, this time the outpatient clinic. While I head over for my blood draw, my dad heads back to the unit I just left, to see if he can retrieve the two items I left behind: the new foam pillow that Jan brought me, which was disguised as a regular pillow and so avoided the packing frenzy; and the marionberry preserves from Jeff, which were hiding in the refrigerator by the nurse's station. No pillow, but the preserves are still there, thank goodness.

I get my vitals taken, lines flushed, blood drawn, and dressing changed. The nurse notices that the whites of my eyes are slightly yellow -- a topic to raise with my doctor.

I head over to the waiting area to see my doctor. It's a short wait. First, a nurse reviews how things are going and reviews my two lists of medicines, making notes for the doctor.

Shortly, my doctor comes in, with most blood test results already in hand. I'm doing about as well as one can do at this point. While the white blood cells have dived — expected after discontinuing the Neupogen — the leading indicator of successful engraftment, the platelets, are increasing a good pace. My appetite and energy level are very good for D+17. She attributes at least part of this condition to my positive and cooperative attitude. (It had never occurred to me to be uncooperative with the doctors, due to my confidence that they knew what they were doing, but apparently I would be surprised at how often that happens.) She resolves the differences between my two medication lists, answers my long list of questions, and concludes with, "See you next Monday."

The last time we talked, by phone, she had said she expected to see me weekly. Subsequent interactions with other doctors and nurses had prepared me for the possibility of a return visit on Thursday, so "next Monday" was the cherry on the sundae for a very good Monday.

After she left, the fellow and the transplant nurse came in. The fellow had a serious face. "So, you've heard... you're being re-admitted tonight." Since this was the same fellow who previously promised to increase the frequency of my nightly interruptions and told me on discharge day that discharge time was not midday but 7:00 p.m., I wasn't fooled. I just hope he reserves his kidding for patients he knows are on to him, because it could distress less prepared patients.

The nurse and I discussed a few things, and she got the information she needed to update my line flushing supplies.

Then my dad and I drove home, in a very good mood.

Simple Pleasures

Highlights from my first 24 hours at home:

• Papa Del’s pizza
• A salad that is not predominately iceberg lettuce
• Watching basketball with Paul
• A shower with a higher flow rate than a spray bottle
• A bath towel larger and more absorbent than a dish towel
• Peeing into a toilet instead of into a handheld plastic urinal
• A comfortable bed
• Sleeping with Jan
• A long morning walk outside with Jan
• Bread from Great Harvest

Bliss.

There's No Place Like Home

Just a quick note, since I have some other things to do today. I'm now at home, feeling pretty healthy. It's great to be here.

Some future blog post topics: the excellent medical care I received, the things that can wrong over the next few months (a short list), and the precautions I need to take to minimize the risk that things do go wrong (a long list).

Interesting fact brought to my attention by the man who delivered my medications today -- today is St. Joseph's Day. (St. Joseph is the patron saint of people named Joseph.)

Goodbye Room

In the sickly green room
There was a telephone
And a button red
And no view of--


Anything much outside my head

And there were transport staff who didn't care

And sleep in bursts and one bad nurse

And sweats and chills and countless pills

And a small TV and surgery

And fiber-free, oversalted food

And a secretary supremely rude

Goodbye room

(Not a moment too soon)

Goodbye space without leaf or bloom

Goodbye gown and goodbye pole

Goodbye oatmeal piping cold

Goodbye shower that doesn't wet

Goodbye pillow that makes me sweat

Goodbye oversalted food

And goodbye to the secretary supremely rude

Goodbye transport that doesn't care

Goodbye hospital, hello fresh air.


(Any similarity to the children's classic Goodnight Moon is entirely intentional.)

D+14 -- Last Night!

The night passes reasonably well. Again, I forgot to ask for my recent sleeping meds. However, this time I don't need them, and I fall back to sleep after each interruption, eventually. Part of my difficulty returning to slumber is my growing excitement about walking out of here some time tomorrow. At one point, my eyes get teary -- I'm not crying, but close.

Later, I have Earth, Wind & Fire songs running through my head -- "Sing a Song," "September" -- upbeat songs that are hard not to dance to. (Except that I'm in bed.) Not sure why those songs, this night, though my musical preferences are heavily influenced by the music I listened to in high school. Judging by the number of songs from the baby boomer high school years running in commercials these days, I assume I am not alone in my arrested musical development.

I have a now-typical morning of breakfast and some work, broken up by a return visit from the president of the medical center. She tells me she has been keeping up with this blog, tracking my progress, and getting useful information about what it's like to be a patient here. We talk about my next few months and her first few weeks ("like drinking from a fire hose"). It is clear, again, that she has a strong will to make it easier for the staff to provide a better patient experience. I have done what I could during my 9+ weeks. Thankfully, my time here is up. However, I am confident I am leaving the medical center in very good hands :-)

Respecting the wishes of my subconscious self, I put on Earth, Wind & Fire's greatest hits.

The attending and fellow drop by. WBC = 8100 (but it doesn't matter). Platelets are up, hemoglobin slightly down.

Mara calls, to check in. She's very happy with the productivity of her stem cells, after concern over the slight shortage. "Quality over quantity," is her explanation. Works for me!

Dad brings macaroni and cheese from the Au Bon Pain. It is a completely different dish than the macaroni and cheese from Food Service. I can taste a few cheeses, and I want to eat the whole thing. Adrian, volunteer extraordinaire, stops by, and he and Dad engage in a freewheeling discussion of the history of mathematics, mathematical heroes, and more.

Dad heads to the train station, to arrive in Champaign this evening. He'll be back late morning tomorrow to break me out of this joint.

Listening now to Eric Clapton's Unplugged album. Probably going to Bonnie Raitt next.

In the late afternoon, a nap pounces on my eyelids. I am awakened by a call from a local pharmacy about a prescription I need to get filled up here since it can't be filled in Champaign. They will deliver it tomorrow, in the early afternoon. Depending on how early "early" is, we may be all packed up and ready to go, waiting on them.

Paul e-mails me a homecoming preview: (Thanks, Paul!)

I work on the race web site with the UNC-LIU game on.

Last dinner from Food Service: frank and beans, fries, salad. (Papa Del's pizza is on the menu for tomorrow's dinner.) More basketball, including the Illinois-UNLV game. Looks like they brought back the Illinois team from the beginning of the season, the one that plays for 40 minutes. More work on the race site. A little packing. (!)

To bed.

Last night!

D+13 -- Not At All Unlucky

It's nice sleeping without being tethered to an IV pole, although I have not had too much trouble with it. Only a few times have I wrapped the line around myself while sleeping. And visiting the bathroom is simpler. Initially, and for quite a few weeks, I made it harder on myself than it needed to be, by keeping the pole plugged in and navigating the five-footed pole around the power cord, to the bathroom and back. Inevitably, on the way back, I would end up maneuvering the pole's feet around the cord in such a way that I arrived at bedside with the lines wrapped once or twice around the pole. Then came the epiphany that just as I could unplug the pole and go for a walk, or run on the treadmill, I could do the same for these much shorter walks from bed to bathroom. (My mom always said I was smart.) I would have felt smarter if I had figured this out in week one, and I wouldn't have had to be smart if someone had passed along this tip when my IV life started.

Anyway, it's nice sleeping without the IV. Unfortunately, after an untethered 1:30 trip to the bathroom -- and you would be surprised at how happy that sliver of freedom made me -- I am not sleeping at 2:00 a.m. Instead, I am designing (in my head) an online system that would help Illinois Marathon entrants find available rooms in our area and surrounding communities. As it is, all of the race's partner hotels are telling callers that they are full, though we have some (probably outdated) information that a few of them, and some additional places, have rooms. So I'm building a system in my head in which area hotels directly update an online directory of availability, instead of the current weekly phone survey that is obsolete by the time we get the results. (My mom always said I was smart.)

But this isn't what I want to be doing at 2:00 in the morning. I realize I forgot to ask for my A&A (Ambien and Atavan) before going to bed. (Smart, but forgetful.) I get them now, and sleep until 7:30 with a brief interruption around 5:00 for vitals and a blood draw from the arm. Monday and Thursday mornings are the arm draw days. I'm almost wistful -- this should be the last blood draw from my arm while in the hospital.

Is it my imagination, or does the air constantly pumped into my room, air that is normally dry to the point of causing nose bleeds, seem a little more moist today, and smell vaguely like spring? Could just be me anticipating breathing fresh air in a few days, for the first time in nine and a half weeks. Or it could be that some trace of the warm, moist spring air outside survives the filtering process. I'll go with the latter, since it's a more real connection to spring.

A good breakfast, a good morning of work, back on the IV for two hours (magnesium).

My dad brings in another lunch. Food Service is going to wonder if I'm on a hunger strike. More work.

I have a new attending today; they stay with a unit for about four weeks. He's not totally up to speed with all the details of my case, but he is able to answer some questions. So, I learn that, barring complications, I can travel by public transportation (bus, train, plane) by the middle of June. I can shave with a regular razor when my platelet count reaches 30 (thousand) for sure, and my supervising physician might even be OK with 20. When I get home, I should try sleeping without any chemical aids for a few days before deciding you still need the help. (This was my plan anyway.)

"Can you tell me my counts?"
"Counts? They don't really matter anymore, now that you're past 4000. I think is was 5000 something... maybe 5800..."

Counts don't matter?! I have a graph to update! As soon as he leaves, I request a copy of today's bloodwork results.

5100! (But I guess the specific number no longer matters.) My platelets and hemoglobin are also slightly higher than yesterday, without the benefit of transfusions, so I'm creating the various types of blood.

Because I have reached the magic number (4000), I no longer receive Neupogen shots. Going forward, this means I can expect my blood counts to drift down before they climb again. For example, the WBC might go as low as half of its Neupogen-induced peak. The doctor says this is normal.

A little more work, some blogging, a walk, dinner (grilled tuna steak on a salad, McClintock fig bar for dessert), a shower.

I am (almost certainly) going home on Saturday. Once I'm home, the pace of blogging is likely to slow down. There will be fewer changes from day to day, and I will have more responsibilities. But it's still a different-than-normal life, so I will post something every few days. If something interesting comes up, I'll post more often, but I'm hoping it's all pretty boring for months and months and months.

5100! 5100.

Communication Breakdown

There is room for improvement in the Nurse call system. We all have a big red button on our bedside remote, labeled Nurse. We have many different reasons to press it: need water, pump alarm going off, having trouble breathing, and so on.

Typically, the call is answered by the unit's secretary, who then (in theory) informs the appropriate person to take care of the request. Secretaries have more duties than just answering these calls, so sometimes they are away from the nurse station. In that case, somebody else will respond -- could be a nurse, or an NSA. If you're lucky, it's your nurse, and he or she says, "I'll be right there," and you know it's true. If it's anybody else, you enter a zone of uncertainty.

The initial response to pressing the button is inevitably, "Can I help you?" After you convey your request, you almost always hear, "I'll tell your nurse," and that's the last you hear from the secretary. Typically, the nurse comes by in a few minutes, so all is well.

However, there have been more than a handful of times that the nurse does not come in a few minutes. A few days ago, I called the nurse station about a pump alarm. "I'll tell your nurse." Fifteen minutes later, the alarm is still going off, and there's no nurse. I call again. "I'll tell your nurse." Five minutes later, the nurse comes, pleased at having timed her arrival just as the alarm was going off. When she hears that the alarm has been going off for 20 minutes, she is puzzled. She had not received a page after my first call. (She had received the second page, but mistook it for one about a patient she was attending at the time.)

My worst case, when I first started having a significant fever, required about 75 minutes and multiple requests for attention before there was any indication of a response, and that was only because my father went out into the hall to find out what was going on.

There was a small but extreme case of non-communication a few nights ago, where the responder never spoke, just opened the channel, heard the pump alarm, and closed the channel again, causing me to call again. He or she perhaps figured that the treatment I was receiving not only cured leukemia but also gave me mind-reading capabilities.

Earlier today, I called about a pump alarm, and the secretary hung up on me without saying anything (but did tell the nurse, who came shortly).

As I write this, I am 15 minutes past "I'll tell the nurse," with a pump alarm going off. Just called again. "I'll tell your nurse." I've been here long enough (9 weeks, 1 day) to know that all this alarm means is that my magnesium is done, and I don't need to worry, and I barely notice the alarm anymore because I have heard it so often.

The nurse comes in, 20 minutes after my first call. She did not receive a page after my first call. Earlier today, she walked past a patient room, heard the alarm, went in, asked if the patient had called, and learned the patient had called 20 minutes earlier. In that case, again, no page.

So, one problem is the secretary (or whoever receives the request from the patient) not actually following through on the promised response to tell the nurse.

Even if the nurse has been contacted, there is no guarantee that the nurse can respond right away. There are plenty of legitimate reasons that you might not get an immediate visit from your nurse: your alarm is less pressing than the needs of another patient at the moment, your nurse has been called away from the floor, the pagers aren't working...

Whatever the cause for the delay, let the patient know. It's common courtesy, and good customer service. "I'm sorry. Your nurse is with another patient right now and might not be there for 15 minutes." "I'm sorry. I paged your nurse but haven't heard back. I'll try again, and if I don't hear anything, I'll send in another nurse."

Because if we don't see a nurse within 5 minutes, we start wondering if you actually paged the nurse, and with good reason. In many cases, we're going to worry, and with good reason. Worry is bad for our health, so don't undermine the excellent medical care we're getting with your poor communication skills. Keep us informed, unless you know, for sure, that the nurse or whoever is about to walk into our room.

= = =

And another (minor) thing... I don't really understand "Can I help you?" as the standard response to the call button. I pressed a button that effectively means, "I need help." "Can I help you?" is not the right response. I'm constantly tempted to say, "I certainly hope so."

"How can I help you?" makes more sense, but maybe the hospital's supply of that question has been commandeered by Food Service so that they can get their calls off to an inefficient start by asking how they can help me instead asking for my name, which they need before they can actually help me by taking my order.

I associate the phrase, "Can I help you?" with either mixed or negative situations. There are the sales staff who approach you as you browse the offerings at a store, which is sometimes appreciated and sometimes not. I associate it even more with people who are actually saying, in a sarcastic way, "Stop invading my (expansively defined) space/bothering me/existing." Parents of teenagers may know what I'm talking about.

= = =

Of course, tone makes a big difference. And many of the secretaries say, "Can I help you?" with a tone that makes it clear they want to know how they can help you. These are the ones that often fulfill the request themselves, if it's not medical: bring you water, or a copy of your most recent labs, or a juice.

On the other hand, others convey annoyance, boredom, fatigue...

There is one secretary here who surpasses them all in her negative tone. Her rendition of "Can I help you?" is set to a melody familiar to parents.

I do not have the knowledge to write this score. I could not even
have told you how many lines on a staff. Original draft
by my father, with help from Wikipedia. Final draft by me.

It's the melody that usually goes with the lyrics, "Do I have to?" So you feel like that's what she's really saying, despite the words.

This same secretary has a lot of trouble keeping her finger on the Talk button long enough to complete her response. So after you burden her with your unreasonable request for water, or pain relief, or breathing assistance, you might get the response, "OK, I'll (click)." You'll what? Forget to page my nurse? I'm sure you have better things to do than respond to patient requests for help, but once you've stirred yourself to listen to my plea, the least you can do is hold the button down for the whole 10 seconds (or less). If that's too hard, please get another job.

D+12 -- Exponential Growth

At the very beginning of the day, which is to say just after midnight, one of my pump alarms goes off. This is no longer alarming to me, since I have learned what the the different alarms mean.

There's the bird-like dee-deet dee-deet .... dee-deet  that means the medication has been delivered. There's the deet ........ deet ...... deet .... that means the battery is running low. And there's the deeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee that sounds like a patient flatlining, if TV medical shows are to be believed. That one was alarming the first time I heard it, even though I was not hooked up any machine that could evaluate whether I was dead or alive. The flatline alarm means the battery has run out of power.

Usually, the nurses work out the timing so an alarm does not go off in the middle of the night. Not this time, but this late night alarm isn't as disruptive as it might have been, since I still haven't fallen back asleep after vitals.

I press the Nurse button on the remote. I hear the click indicating the channel is open, and then the click indicating it's closed. I press the button again. "Can I help you?" "Yes, my pump alarm is going off." "I know. The nurse is on his way." She sounds annoyed that I called twice.

I realize that when she responded to my first page, she immediately heard the alarm, closed the channel, and dispatched my nurse. As far as she was concerned, she had solved my problem. However, since she did not respond to me, I had no way of knowing that.

This complete lack of verbal communication with the patient was the most extreme case of a more general problem with the Nurse button, a failure to let the patient know what is going on.

I don't have a very good night of sleep, but it's enough. Breakfast is good: oatmeal with bananas, dried cherries, walnuts, a little brown sugar, and a sprinkle of cinnamon; a cream cheese "omelette" (scrambled eggs that I wrap around some cream cheese); grape juice. I realize I should have ordered some milk for the oatmeal, and then realize there are drinks in the Nutrition Room on the floor. To the Nurse button!

*click*
"Can I help you?"
"Do we have milk in the Nutrition Room?"
"Yes."
"May I have some?"
"(unintelligible and cut off)" *click*

Nurse button, take two.

*click*
"Can I help you?"
"Could I please have some milk?"
"(unintelligible and cut off)" *click*

Nurse button, take three.

"Can I help you?" (Annoyed?)
"I'm sorry, but I have not been able to understand your answer the last two times. Could I please have some milk?"
"Yes."
*click*

(Thank you for holding the Talk button down for the entire duration of your response this time!)

The milk arrives. That was Not Easy.

Some work, some nap to make up for last night.

Doctors come. WBC = 2700. (200, 300, 700, 1400, 2700...) Neutrophils are 2200, which means I am officially not neutropenic anymore, and have some defense against bacteria. I am still very vulnerable to infection, because other parts of the immune system are not back yet, while still others are being suppressed by medication to reduce the chance for rejection. Medically, I could maybe go home Thursday, more likely Friday. Logistically, Saturday is the first day that works. So, barring a late-breaking infection, I'm going home Saturday. (!)

I used white for the bars, to symbolize white blood cells,
and red for the background, for blood in general.

Dad comes, with lunch from Au Bon Pain. Some visiting, some more work.

I take care of some medical administrivia back home. For some reason, the rest of my family was assigned a new primary care physician earlier this year, as if we were new to the system, and as if Paul were an adult. I restore Paul to his pediatrician of 15+ years, Jan to her doctor of many years, and move Jake to a new doctor that comes highly recommended, since Jake is now too old for a pediatrician and we don't know anything about the doctor he had been assigned to. I also change my primary care physician to the same doctor as Jake, since I have lost confidence in my previous doctor.

On the home front, the stairs and upstairs hallway get new carpeting, which is great except that the installers leave 90 minutes worth of cleanup, which the housecleaners have to take care of before getting to the cleaning they were planning to do today. The installers also leave a note: "Sorry for the inconvenience. Our vacuum broke." The manager is incredulous. According to him, installers don't travel with vacuums and would not leave a note. Note in hand, Jan later invites the manager to come see it, and to check out the quality of the installation while he's at it. Like she needs another hassle.

Dad heads off to the Art Institute. I do some more work, get in a 30-minute walk, and get disconnected from the IV pole. I will now take all medications orally. If I need electrolytes, I'll get reconnected, but not for long.

Dad returns with dinner -- Black Bean Turkey Mango Brown Rice bowl, and a coconut chai, with dessert (oatmeal chocolate chip cookies) provided by sister Lauren and niece Isabel.

Dad heads off. E-mail, Facebook, blogging, get ready for bed.

2700!

D+11 -- A Joyful Pain

After midnight vitals, I have trouble getting back to sleep. This has been common, though the anti-dynamic duo of Ambien and Atavan have been fairly effective in the past, and I went to bed with both of them this night.

The problem this time is that I have these small aches, all over, but mostly in my legs. "Now what? Oh, wait... I've read about this... side effects Mara might (did) experience as the Neupogen puts stem cells into overdrive, and the marrow becomes crowded with new cells. That would be awesome!"

The pain isn't bad, but it's enough to keep me awake. Tylenol to the rescue, followed by a good, long sleep (by hospital standards).

When I wake up, I do some work for the race.

Breakfast is from Food Service, enhanced from the pantry: oatmeal with fruit cocktail (ordered peaches -- close enough), dried cranberries, walnuts, whipped topping (because I'm a small-time hedonist); orange; hard-boiled egg; grape juice. I don't drink the grape juice straight -- too sweet -- but a little of it in a glass of ice water is refreshing.

Almost makes you wish you were, right?

Some work, by phone and computer.

A call from my supervising physician. She sounds happy. She tells me my counts are looking great. Today's WBC is 1400. (200, 300, 700, 1400...) It's looking likely that I get to go home this weekend. (!) Another bit of good news is that, contrary to my expectations, my only guaranteed return visits to clinic are Monday mornings. I may need to return more often if complications (such as an infection) appear, or if the regular Monday bloodwork turns up something that requires further testing. 

A nurse comes in and tells me we are starting to shift some of the IV medications to tablet or capsule form, another necessary step before being able to leave. The countdown has definitely begun, though it is less determined than a rocket launch. It could go, "4, 4, 3, 2, 2, 1..."

The fellow brings me a copy of the Black Book.

Meanwhile, following the guidance of her copy of the black book, Jan has been arranging the housecleaning, the carpet-cleaning, the removal of couches, the purchase of couches. Also, co-directing a marathon and publishing a magazine. Yikes.

The attending stops by. Yes, the counts are good. (His guess for today had been 2000, so he's 1 for 2 on predictions.) I mention that the information in the Black Book and the information from various medical staff is not consistent. Don't have any houseplants. Houseplants are OK, but not up close and not where you spend a lot of time.

We have already determined that the Black Book dietary information is outdated, but there are other issues. One page reads as if you can't shop, cook or drive. Another page says to avoid grocery shopping. Yet another page says to shop when the store isn't crowded. (But it doesn't mention that you need to thoroughly wipe the shopping cart handles, which are cesspools in an easy-to-grab form.) Some passages are repeated often from one section to another. It may be relevant to display that information in multiple places, but it should be clearly identified as repeated information, because otherwise the reader tends to skip over it and may skip too far. Overall, the book reads like a committee product that lacked an editor, which seems pretty likely.

The attending asks if I would look through the book and provide feedback. You get three guesses as to my response, though if you need three for a yes/no question there's something wrong with your reasoning skills, and if you've been reading this blog, you only need one, and it shouldn't be a guess.

My dad arrives around noon. I have lunch and do some more work, for Human Kinetics and the race. Dad heads off to check into his lodging and to bring back dinner.

Feeling a little bit more of that joyful pain. During the day, it's not disruptive enough to bother asking for Tylenol.

1400!

D+10 -- Generally Great, with a Side of Kvetching

A good night of sleep, perhaps helped by the new pillow Jan and Paul brought me yesterday, definitely helped by Ambien and Atavan. The hospital pillows are on the insubstantial side, which is actually OK with me. However, they are encased in plastic, for sanitary reasons, which means you always wake up with a clammy pillow under your head, even with a pillowcase between your face and the plastic. There have been nights that I assumed I had a high fever because my pillow was so damp, an assumption dispelled by the every-four-hours vitals check.

Breakfast was partially from my pantry (Kashi Honey Puffs, dried cherries, walnuts, golden raisins) and partially from the food service (pepper, mushroom, onion, and cheese omelette).

Some work in the morning. The fellow comes by, with nothing much to say except that the WBC (white blood cell count) is 700. (200, 300, 700... I like the looks of that.) Above 4000 and you can defend yourself (and leave the hospital).

I shave. I have some scattered whiskers below my nose, and some more on my chin. What they lack in numbers they have started to make up in length, and they're annoying. (On the plus side, maybe this means I'm through with the hair loss side effect of chemo.) I have to use an electric razor, for safety reasons. With such low platelets, a nick could bleed profusely. Also, with my white blood cell count so low, a nick is an infection risk I need to avoid. Knowing this would be the case, Jan had picked up an electric razor way back in January.

Twenty minutes into shaving a very small area of my face, I have made little progress. The razor buzzes convincingly as it passes over the whiskers, as if it were doing something, but the whiskers remain. Their numbers are slightly diminished, and some of the others are shorter than before, but I have essentially the same scraggly excuse for a mustache and soul patch that I started with. For all I know, the few whiskers that show up in the sink left my face on their own, to get away the constant buzzing. Maybe Jan picked up a toy electric razor -- "Shave like your dad! (Safe for kids 2 and up.)" Or maybe this is really a facial massage device, shaped like a razor to protect the fragile male ego -- "Give yourself a facial massage, while looking like a man." But it's clearly not an effective razor. It wouldn't hurt a whisker.

Lunch from the pantry -- lentil soup, marionberry jam on ak-mak crackers, seltzer, mango. More work in the afternoon. A nap.

The larger posse comes by in the afternoon, confirms the counts. I learn the following:

• WBC over 4000 is one threshold for leaving the hospital.
• Sufficient platelet creation that I do not need daily transfusions is another threshold. Every two or three days is OK (though inconvenient). I might be there already.
• Red blood cell and hemoglobin counts are rarely an issue. If the other numbers are sufficient, these almost always are, too.

Also, upon leaving the hospital:

• Avoid houseplants. I can look at them from across a room, but I cannot be near them or care for them in any way. Soil contains fungi and bacteria, and I have already learned how much fun fungi can be.
• No gardening or yardwork, at least through this summer, maybe into the fall. (Same issue as with houseplants, only worse.)
• Minimal sun exposure. Run early in the morning or late in the day, with a hat, with either full-length sun-blocking fabric or a high SPF sunblock.

There are many more restrictions, all contained in the Black Book, which Jan took home with her so she can begin preparing our house to not kill me. Thorough housecleaning, carpets cleaned (some replaced), drapes cleaned (or removed), plants removed... Lots to do, with, unfortunately -- but also fortunately! -- not much time to do it.

I provided a stool sample a couple of days ago, so I ask if the results are in. The doctors weren't aware of any results, and didn't even seem to be aware that the test had been run. Either there are no results to report, or whatever test was run came back negative and therefore didn't show up in red on my daily chart.

I did conduct my own ALOA (Arm's Length Olfactory Analysis) of the stool sample at the time of its creation, and I got the results immediately. Despite all the praise I have received for how I'm handling my condition and treatment -- the grace, the courage, the wit -- I can confirm that my shit does, in fact, still stink. A lot.

More work, 30 minutes on a bike, time to order dinner. My appetite is a little weak, so I think carefully about what appeals to me. The roast pork with gravy is pretty good, as is the bread dressing. Add some broccoli and corn, plus desserts from my pantry, and it should be a good dinner. I call Food Service. "Food Service. How can I help you?"

I'm not sure why so many of the call takers start the interaction this way. The only reason I would be calling is to order food, the only way you can help me is to take my order, and the only way you are going to allow me to order food is to ask for my name so you can verify who is calling from the room and determine my dietary restrictions, so really it would be better if you just asked for my name right up front.

For a while, I would answer the "How can I help you?" question with "I would like to order breakfast(/lunch/dinner/some food)." And they would inevitably ask, "First and last name, please." Now, I don't bother to answer the question and just tell them my name.

I start my order. Pork, dressing with gravy, broccoli... "I'm sorry. Broccoli is not allowed on an oncology diet." It is the case the people in my condition are not supposed to eat raw berries and raw broccoli. However, neither of those items are on the menu. It is not possible to order raw broccoli or raw berries, yet somehow the system is programmed to prevent oncology patients from ordering cooked broccoli.

Many, many weeks ago, when my neutrophil counts first took their dive into oblivion, this same restriction had been imposed. When I asked the doctors about it, they said it made no sense and appended a note to my dietary plan saying that broccoli was OK. So I have happily been ordering broccoli every few days, both because I like broccoli and because it is the only member of the very nutritious cabbage family available, unless you count the 5 shreds of red cabbage in the tossed salad. (I don't.) I asked the call taker to check the notes. "I don't see any note about broccoli. Oh, and you can't have the bread dressing, either. I think it might have broccoli in it."

I am feeling stubborn, even angry, in the face of this capricious reimposition of an irrational restriction. "I'll call you back."

I press the big red Nurse button. "Is there a doctor available to clear up my dietary restrictions?" I feel guilty immediately. This is not exactly an emergency, and I could stomach mashed potatoes and green beans for tonight and address the problem tomorrow when the doctors come by on their regularly scheduled rounds. And I only have 15 minutes to get a reply, because the Food Service phone shuts down at 8:00.

At 7:55, with no doctorly intervention forthcoming, I call back to Food Service. "Thank you for calling Food Service. May have your first and last name?" I inefficiently take a moment to thank her for the efficient way she answers calls, and then restart my order. I mention that I wanted to have broccoli but was for some reason being prevented. After some discussion, she agrees that a ban on raw broccoli should not block me from ordering cooked broccoli, and she provisionally allows me to order the bread dressing. She will find out why the dressing is blocked, and then send me either that or my backup of mashed potatoes.

When dinner arrives, it has beautiful, bright green broccoli. Also, the least appetizing glop of bread dressing I have ever seen -- it looks like the fake food you sometimes see on display plates at lesser restaurants. It has a glossy sheen, and when I lift a forkful, the rest of it tries to come along for the ride. You win some, you lose some.

I see that I delivered several sides of kvetching, not just one. But it was still a great day. 700!

D+9 -- Counts!

Went to bed with both Ambien to help me sleep and Atavan (anti-nausea and pro-sleep). I sleep pretty well.

I have been on an every-8-hours Zofran regimen since yesterday. It's working -- only barely nauseous when I wake up.

I get some Lasix because my blood pressure has been getting a little high, for me -- 150/80. This is a result of all the liquids dripping into me all day: Prograf, vancomycin, meropenem, magnesium, platelets (sometimes), red blood (sometimes), more... The Lasix does bring my blood pressure down to more normal, for me -- 120/70. Lasix works by reducing the amount of fluid in your body, which means I have to pee every 30 minutes.

The doctors visit, with news! My white blood cell count is 300, indicating that the stem cells I received 9 days ago have settled into their new home and have been getting to work. Tomorrow's numbers will allow us to start narrowing in on a go-home date. (I later find out that the count was 200 yesterday, but the doctors had visited before the counts were available.)

Jan and Paul visit, with treats! Seltzer, McClintock fig bars, chopped nuts, golden raisins, a mass of cards. Claire also comes by, getting in a visit with her college roomie (and me).

Around 7 p.m., I go for a walk. With the two bags of blood I got today, I figure I should be pretty peppy. I'm wrong. 1.2 miles in 25 minutes, and it's hard. And the nausea is coming back. But at least I get some good laughs from my current Kindle reading, A Walk in the Woods.

After my walk, it's time for my regularly scheduled Zofran. (Maybe that's why the nausea started to come back -- I was jonesing for my next hit.) 

Dinner, help Paul with some studying by phone, do some Illinois Marathon data work, go to bed. Although, since I spent most of the day in bed -- sitting up, usually -- it would be more accurate to say that I put my Advanta™ 2 bed into the "Bed" position and turned out the light.

D+8 -- Nausea

(Saturday)

The Infectious Disease docs wanted another stool sample and left a "hat" the night before that sits in the toilet bowl. At 6 in the morning, I get to make another public "I made a poopie" announcement. The nursing assistant who comes to process that hat's contents is very pleasant about her role, at one point saying, "Thank you so much." Um... you're welcome?

When I finally get up, I am nauseous. I request and receive a Compazine tablet. It doesn't help. We try some Zofran, which also doesn't help. More Zofran. A little better. I order and eat a late, bland breakfast, even though I don't feel like eating. Although it's the most nauseous I have felt during my 8+-week stay, I would rate it about a 4 on a scale of 10. Compared to how some people feel at this point in their treatment, I'm getting off lightly.

The doctors report that my white blood cell count is still beneath detection.

Jeff comes by a little after midday, with a St. Patrick's Day tam, and a necklace.

The tam and necklace go so well with my gown, and with
my nausea-hued face.

Mid-afternoon, I order a bland lunch -- noodles with parmesan and a salad.

Jeff heads to the airport. We agree that we should get together before another two decades pass. Jeff has sweetened the prospect of visiting Oregon with some mouth-watering descriptions of the food he and his wife eat, either at home or in area restaurants.

Shortly after Jeff leaves, Claire arrives. Claire was Jan's college roommate, and we spent a few days in Maine with her, her husband David, and their dog Marseilles last summer. Claire was giving a presentation in the Chicago area and was able to stay over the weekend to see me and (tomorrow) Jan.

Late afternoon, Claire leaves and I take a nap. The anti-nausea medicine is working well enough that I order a fairly normal dinner, though still on the bland side -- baked fish, baked potato, broccoli.

Eventually to bed.

D+7

Not much to report here from TN655. Not quite as peppy as yesterday -- being low on hemoglobin probably explains part of that. Blood counts still not moving -- sometime next week is when we expect to see them climb. Got in a walk (cut short by a medication pump going off because its delivery was complete) and a shower.

I watched the critical 10 minutes of the Illinois-Michigan game, which was a perfect miniature of the entire season. "We can score at will, in many ways... This is boring... Let's stop playing this way... Will there be Rice Krispie Treats after the game?... Oh, crap. We lost, again."

Also watched a lot of CNN.

Relay for Life

We're coming up on Relay for Life time, all over the country. As I marvel at the sophistication and relative precision of the medical care I'm receiving, I'm keenly aware that the care is far better than it was five or ten years ago, thanks to all the research that has been done. A lot of funding for that research comes from Relay for Life and similar events.


If you're reading this, you know at least one person who is benefiting from that funding. You almost certainly know more than one, and some of you have yourselves been beneficiaries.


If you're reading this, you're already supporting me, and it helps. I love seeing comments, and even just seeing the names that pop up on the list of followers. I also know that there are many more people reading than are listed as official blog followers, and that helps, too. Connection is part of the cure.


If you're looking for a way to support future cancer patients, I encourage you to participate, physically and/or financially, in the upcoming Relay for Life. There is almost certainly one in your community. In case a local effort doesn't grab your interest, here are a few other efforts that I know of, from my son Jake, my niece Lucy, and my friend Jeff. Details below.


Jake = ==


Dear family and friends,

Each year, the Haverford Men's Soccer team engages in a community service project. For 2011 we have decided to raise money for cancer research by participating in the Relay For Life that will take place at Haverford College on April 2-3, 2011. On that night, we will walk around a track as a team from 8 pm to 8 am: cancer never sleeps, so neither will we! (For one night, at least). We have decided to donate to the American Cancer Society because cancer has affected our team in a particularly potent way this year—several players currently have family members battling the disease.

I have volunteered to be the coordinator for our relay team. I've set up a team page at the following URL:

http://main.acsevents.org/goto/haverfordmenssoccer

If you follow that link, you will see a team roster. (It's not too populated at the moment, but many players are fundraising without having registered online yet.) Click on my name, and you will be presented with a button labeled "Donate." I would greatly appreciate any level of donation you feel comfortable making—even $10 brings us closer to our initial team goal of $1000, which we hope to meet and exceed very soon.

Please contact me with any questions you may have about the Relay For Life event or donation process. And thank you in advance for your time and generosity!

With love,

Jake Seeley

www.haverford.edu/athletics/soccerm

Lucy = = =

I am walking in the Relay for Life in honor of the people I'm close to personally who are currently battling this disease:  My Uncle Joe is fighting Lukemia, My Good Friend Dianne Legg is fighting Lung Cancer and my Soccer Teammate's Mom is fighting Breast Cancer.  I feel my participation in the Relay is the least I can do to help my family and friends and to help raise money so the American Cancer Society can help them and others battle the disease.

Click here to visit my PERSONAL page.
If the text above does not appear as a clickable link, you can visit the web address: 
http://main.acsevents.org/site/TR?px=19518001&pg=personal&fr_id=31342&fl=en_US&et=ZyoALzkCduLPrNExcp4Vow..&s_tafId=643990

Jeff = = =

(see his blog comment) (not Relay for Life, but just as good)

D+6 -- On a Roll

Another good, uneventful day. Reasonable energy level. Took a nap and a walk. Jeff brought in pizza for dinner.

Got some platelets. I have virtually no white blood cells (expected at this point).

Getting ready for sleep.

Meanwhile, Across the Seas...

I have mentioned before that my brother Karl and his family are spending the academic year in the Czech Republic. He is teaching, and his wife Kate has been keeping a marvelous blog of the year, which is going to be a lasting treasure, especially for their sons (currently 6 and 8).

Recently, Karl has dipped his toe into the blogging waters. For a really well-written piece on regime collapse (Egypt and friends, Soviet Union and friends), with the right mix of personal and historical references, I recommend his latest.

Did I mention that the rest of the blog is wonderful, too?

D+5 -- An Excellent Day

Unlike the previous morning, I wake up this morning actually feeling awake. I get exactly the breakfast I order, including, for the first time, a little bit of whipped cream with the waffles. (Third time's the charm, I guess.) I also top the waffles with marionberry fruit spread, an Oregon specialty delivered by my friend Jeff, who visited last evening and is in town for several more days.

I work on a web site prototype, take a short nap, go for a walk, have lunch, take a shower, do some more work, have another nap. Jeff brings in some dinner, we start to catch up on... um... about three decades. It's a good day.

Last night, when ordering dinner, I unraveled the mystery of the single ounce of mango smoothie. The normal serving is 10 ounces, but the call-taker only managed the first digit while taking the order. So, the person filling the order was probably thinking, "Some of these patients have crazy requests, but whatever makes them happy..."

Today, I notice that I have three spare rolls of toilet paper in the bathroom, including the one I obtained myself. Had I overlooked two rolls during the Great Toilet Paper Panic of D+4? Or had housekeeping replenished my supply since then? Beats me.

Related to the Great Toilet Paper Panic was the fact that I was experiencing diarrhea. This could be the result of a bacterial infection, so they took a sample for that. It could also be a common side effect of chemotherapy. If it's bacterial, they'll add another antibiotic to my stew.  If not, they'll give me Imodium. In the meantime, the nurses want to keep track of my bowel movements. "Just let me know when you have your next one." A few hours later... I have news to share. I press the red Nurse button on my universal control. "Can I help you?" "Uh..." -- realizing that I am broadcasting this news to everyone within earshot of the nurse station -- "... my nurse wanted to know when I had a bowel movement, and I just did." "Thank you. I'll let her know." (Are they snickering? Probably not.) No matter how formal the language, and no matter that I was merely following my nurse's request, I still feel like the toddler in potty training who runs down the hall yelling, "I made a poopie!" Except I don't get a little sticker.

It has been great having Jeff visit. We were friends, teammates, and fellow theater techs in high school and again in college, and best men at each other's weddings. And then... not much contact. I knew he had moved to Oregon, but I didn't know his mother died until well after the fact. And even when I did find out, I didn't manage to get in touch. Bad friend! But as soon as he learned of my incarceration, he was proposing a visit. Good friend!

Which brings me back to why I named the parrot Leuk. Leukemia is horrible, but it has brought blessings along with the suffering. Renewing friendships, seeing how many people offer so many types of support, learning how valuable even the smallest gestures are, learning (therefore) ways I want to be better... priceless.

D+4 -- An Interrupted Nap

I had a great night of sleep. 9:30 to 7:30, with the least possible number of interruptions. Even my self-scheduled bathroom trips ended up coinciding with visits for vitals or medicine. Very efficient.

I was still tired when I woke up. I've been tired all day. Not a sick tired or a sore tired, just curl up in bed and close the eyes tired. This is normal a few days after transplant, exacerbated this morning by Benadryl as premedication for another platelet transfusion. The whole day has been more or less one long nap with occasional breaks for each end of the digestive tract. (Is there a limit to how long you can sleep and still call it a nap?)

Jan and Jake visited in the morning before heading back to Champaign after a good long weekend here.

I told the doctors about what great sleep I got the night before. On the way out, the fellow said he would try to arrange vital checks every two hours. It took me a moment to realize he was joking.

I had been observing to staff that I was running low on toilet paper, and the matter had been referred to housekeeping, but housekeeping did not have the same urgency about the matter as my bowels did. I didn't quite run out, but I could see the future and it wasn't pretty. When I later went out on the corridor, I asked a nurse for help, and he raided an empty patient room for me. Nurses are great.

= = =

Not a banner day for food service. This morning, after the call-taker expressed mild delight at my plan to put cut peaches instead of sugar on my oatmeal -- "that sounds really good. I'll have to try that" -- the tray arrives without peaches. Or silverware. I call. "We'll get that up as soon as possible." 45 minutes later, silverware, and peaches for my cold oatmeal. In the meantime, I eat my egg and sausage, and slice up a mango. (Thanks, Adrian.)

Lunch is great -- leftover curry over noodles, from last night.

Snack -- fried mozzarella sticks with marinara sauce and a mango smoothie. 45 minutes later, the snack arrives. The cheese sticks are pretty good. For some reason, I receive a single ounce of mango smoothie. Which, 45 minutes after it is poured into an uninsulated plastic cup, no longer qualifies as a smoothie. It is now a chug of warm mango syrup, which I can't bring myself to try. I know there are restrictions on what we can eat based on our condition, but I cannot imagine what would make one ounce of mango smoothie acceptable but a full cup a danger to my health.

Transport Followup

I have described the patient transportation system here (Transport, Return of Transport) as approaching dysfunctional. In the interest of fairness, here is some nuance.

In my first account, I mocked the musings ("Dumbocrats") of a person behind the desk at the x-ray waiting room. I had a second encounter with the same waiting room, and again Transport was lacking. My trip was supposed to be a round trip, which means my transporter waits for my brief procedure to be over and then immediately takes me back to my room before I am exposed to even more pathogens than are already at work on me. I came out of the procedure, and my transporter was gone. The x-ray tech took it upon herself to get me back up to my room. As we came to the elevator, Mr. Dumbocrats was there, having left his post to help me, my wheelchair, and my IV pole over the gap between the elevator and floor. And then he rode up, to help me off the elevator. The transportation system still broke down, and his political philosophy is still incomprehensible to me. But I have to give credit for seeing a need and going outside his job description to fill it. (Thanks, Limbaugh/Beck Fan!)

In a later account, I mentioned a visit from a transportation manager (probably assistant manager). Particularly alarming to me was learning that the target maximum waiting time was two hours. While I hoped I misheard, or she misspoke, I had nothing else to go on, and my own observations had done nothing to make me doubt that number.

I had a more recent visit, from a different (probably assistant) manager. We reviewed my experiences and observations, and I asked about the target wait time again. This time, the answer was 30 minutes. I know (from personal experience) they're not hitting that number, but at least that is reasonable target.

We talked about the problem with waiting: the patient is isolated, scared, and without information, and these conditions are harmful to patient health. I mentioned Mara's idea of equipping patients with pagers so that they can get in touch their nursers. The manager pointed out that patients are never truly abandoned. There are always medical staff nearby, though they may be out of sight. Perhaps the x-ray or CT or other staff should take responsibility for checking in with patients left in their area.

I also learned that the dispatch system is not quite as primitive as I feared. I imagined (in my negative frame of mind) that a free transporter simply called in and got the next name on the list, which could lead to lots of inefficiencies depending on relative locations. I gather that there is a more sophisticated process, with patient and transporter location being factored in.

There is obviously lots of room for improvement, but the situation is not as bleak as I thought. Hurray.

D+2

Similar pattern to the day as yesterday -- feel pretty good through the morning, get in a workout just before one dose of ProGraft runs out so that I can get in a shower during the changeover to the next dose, then start to drag through the afternoon. Napping/reading...

Some nausea this afternoon -- got a pill to help.

Had some more good food brought in for supper -- salmon burger and cole slaw.

Will probably go to sleep early tonight.

D+1 -- wonderfully quiet

Quiet day. Excellent!

Jake is in for the weekend to visit, and Jan arrived (and slept over) yesterday.

Some web site work in the morning, a 40-minute walk at 1:00, half-napping most of the afternoon, Thai food (from the outside) for dinner, some online Scrabble.

Something's going on inside, because I'm tired, but other than that I feel fine. I'll take it.

Mara to the Rescue

When I was diagnosed with aplastic anemia about six years ago, my two sisters had their blood typed for being potential stem cell donors. My brother was not tested, because he has the same intestinal condition that I do, though more severe. There is some thought that ulcerative colitis is an auto-immune disease,  as are some types of aplastic anemia, and it makes little sense to trade one compromised immune system for another.

Sibling matches are the best donors for leukemia patients.  Other cancer patients can receive their own stem cells. I need a brew that is hostile to any lurking leukemia cells (currently undetected, possibly non-existent, but you can't be sure), while also friendly enough not to pick fights with my liver or kidney. My own cells would presumably leave my organs alone, but they might not go after my leukemia cells -- Hey, that bro's gang colors indicate he's one of us. Let's go borrow a cigarette instead beating him to death.

Anyway, it turned out that Mara was a match and Lauren was not. We might have predicted this, since Mara and I are almost twins -- 11.5 months apart, and, I think, we have always gotten along fairly well. When we were very little, she would aggressively defend me against neighborhood friends/bullies who were being mean to me. (Good training for today.) We have similar personalities -- observant, analytical, introspective. It was her joining the high school track team that led me to join, with positive side effects that continue until today. I was intimidated by the thought of belonging to a real sports team, despite plenty of evidence that I was fast. But once Mara joined, it seemed safe enough to give it a try. We had some overlap in our social circles, which overlapped more when I stayed for an extra senior year and joined her graduating class. (No, I was not held back for academic reasons.)

Lauren and I had a more contentious and probably typical big brother/kid sister relationship. Part of that was surely age -- four years apart, enough to make her a strange being rather than a peer. Part personality -- Lauren is the most spirited and outgoing of the four siblings. (Naturally, such assessments are relative. In plenty of other families, Lauren would be the quiet one.) How did I torment her? Let me count the ways. Or, at least the two that get regular recountings at family gatherings. There were many more, petty and demeaning.

The more benign was when she was 5 and terrified that a monster was hiding under her bed, preventing her from getting out. Joe to the rescue! I volunteered to climb under the bed and give the all clear. "Looks good... Nothing here... Wait... Oh, No! There's something! It's got me! Aaahhhrrg!"

The more sinister incident involved a friend (maybe two) and I dangling Lauren out of a third story window of our house. Partway out, all the way out? Don't recall. Lauren currently says, forgivingly, that she probably deserved it, but I can't remember (or imagine) an offense worthy of that treatment. (Sorry, Lauren!)

Anyway, the sisters had discussed the matching results and decided that it was probably for the best that Mara was the match. As much as Lauren loves me and has forgiven my youthful terrorism, she still could harbor revenge at a subconscious and sub-cellular level. Best to not take any chances.

= = =

Jan arrives a little after 11. I haven't seen her in nine days, which is the longest we have been apart since the first year we were married. She looks good! I don't notice that she's had a recent haircut, another measure that I'm functioning normally.

Premedication starts at 1:00. Benadryl, Atavan to calm me down -- usually not a need of mine, but I'll take it -- and a steroid. It gets hard to type straight. I eventually give up, and I am in and out of sleep until nearly 5:00. At some point, I helpfully wake up and pass along a piece of wisdom to Jan: "flash cards."

Jan keeps a log of the "action":
Transfusion start: 2:22
Second bag: 2:40
Third bag: 3:05
Fourth Bag: 3:25
Done: 3:40
Joe conked out until 4:45.

= = =

Getting started. Leuk pointedly turns his back on the proceedings.

Most of the transplant team. Who knew that some of the Yellow-Bellied
Sneetches would go into medicine?

Everything gets checked multiple times. My name, after seven
weeks, remains Joseph Seeley.

The nurse gets an arm workout by trying to enlist
more gravity into the flow.

Most of the time, I am asleep.

The nurse squeezes every last drop of each bag. 

Finally up, and having a cold one to celebrate. (Ice water.)

We have joked that now I will be more in touch with my feminine side, since my blood will be my sister's. Since I already enjoy a number of activities that are conventionally but baselessly categorized as more womanly -- gardening, cooking -- it's not clear what that would look like. Maybe I won't get into many bar brawls going forward. Unless Mara has a dark side she's not sharing.

Seems like the whole thing went well. No reactions to the cells or to the premedications (other than drowsyness.)

As hoped, a day will little drama and plenty of significance.