Number and Adjustments (D+82)

Went up to Chicago on Monday, and got some good numbers:

• The genetic test looking for deletion-7 (which would indicate a trace of leukemia) came back negative. This doesn't mean there's nothing there, but it's as clean a bill of health as I can get.
• My blood counts are still looking good, and are better than they were over the weekend (while the blood clot was keeping them down).

I also got a couple of adjustments to the plan settled on over the weekend:

• Because I have a bone marrow biopsy coming up in mid-June, I should not currently be ramping up my Coumadin levels. You can't be on blood thinners during a bone marrow biopsy. The injectable blood thinner I am on clears the system within 12 hours, so I will stay on that alone until the biopsy and then make the transition to Coumadin, which build up in the system over time and stays in the system for a long time.
• My local hospital is testing my blood for a genetic predisposition to clotting. Except, they aren't! When the test results come back, we will know whether Mara has such a predisposition but we won't know anything about me. The Chicago hospital will run the same test, using some genetic material they already have. If I have it, we'll want to check our sons.

(The fact that I bleed my sister's blood creates an interesting criminal scenario.)

Lying down seems to provoke the pulmonary embolism, so I have been sleeping the last couple of nights in a sitting position. It's better once I get up and start moving around.

Only When I Breathe (Day+79)

It has been a while since I checked in. Not much was going on. We went to Rockford last weekend for the State Cup soccer tournament. Paul's team won their Saturday game, which earned them a quarterfinal match against the defending state champs. The game was 1-1 at halftime, with both teams having missed some good chances. In the second half, the other team pulled away, but it was a good overall effort. Every year, his team closes the gap on the top teams in the state.

On Saturday night, I started having some pain in my left calf. I have had varicose veins there for a few years, but never any associated pain. Now, the veins themselves were tender to the touch, and standing shot pain from my ankle to my knee. One possibility was a blood clot in my leg. We checked in with my doctor, who gave me a few things to look for — redness, swelling, pain moving to other places.

Over the next few days, the pain got slightly worse, but it did not change in the ways I was supposed to be alarmed about. The worst pain was when standing after sitting or lying down. It was fine when I walked or jogged, and fine when sitting or sleeping. But if I got up to make a sandwich after sitting for a while, it hurt enough that I made some of my lunches and snacks while pacing around the kitchen.

By Thursday morning, my leg felt a little better when I got up. I could stand still without discomfort. Around the middle of the afternoon, I noticed a slight stabbing under my lower right ribs, and up into my right shoulder. It reminded my of last month's (possible) gallstone attack, though the location was a little lower and more to the side. It got more intense until, around 5:00, in consultation with my doctor, we decided it was time to seek medical attention. My doctor suspected a renewed gall bladder problem. All I knew was that every time I breathed, it felt like someone was twisting a knife under my ribs.

At the E.R., I get to use my "go to the head of the line" card — a transplant patient with a suppressed immune system does not spend time in the waiting room, so I am fairly quickly taken into my own room. Jan is there to support me, and our friend Bonnie is there to support Jan.

Getting out of the waiting room quickly does not mean that the rest of the night moved quickly. Since I am not bleeding or having a heart attack, the testing proceeds at a leisurely pace. (I'm not complaining.)

First, blood and urine tests. Given the nature and location of the pain and the recent gall bladder history, they are looking for signs that the gall bladder or liver are malfunctioning. After about an hour, those tests come back negative.

The pain continues to mount. I get some morphine through an I.V. they stuck in my arm, but it doesn't seem to do anything. They ask where the pain is on a scale of 1 to 10. I have a hard time answering this question. If I don't breathe, it doesn't hurt at all. If I try to take a normal breath, the pain quickly reaches a no más point. Is that 10? I can use my yoga breath training to use only the top third of my lungs, and that is a tolerable pain. I assume I have never felt pain at level 10. That might be reserved for prolonged and painful labor or having your testicles caught in an escalator. Since I'm still (except for my blood) a guy, and I don't bodysurf escalators naked, I don't anticipate having either of those experiences.

So, what is my pain? I can't push through it to breathe, but it isn't the worst pain imaginable. Is 9 too high? Is it even a linear scale? For most of the night, I go with 8, plus or minus 1. But only when I breathe. Looking back, that seems high. But maybe a given pain always hurts less in the past than it does in the present.

Next, ultrasound of my abdomen, again looking at liver and gall bladder, but also pancreas and kidney. Another hour or so, and more negative (good) results. Not only do all of the suspect organs look fine, but there is no sign of gallstones.

Next, x-rays of my chest. The protocol involves taking and holding a big breath, but that really is not an option, so I don't know that they get good pictures. The results are generally negative, but do show something that looks like pneumonia. I don't have the other symptoms of pneumonia — fever, phlegm — so it might be scar tissue from the pneumonia I had in February.

Next, a CT scan of my chest. Positive test results! Wait, that's bad. I have a pulmonary embolism, a blood clot in my lungs. I need to be hospitalized and started on blood thinners immediately. I don't know anything about pulmonary embolisms at this point, but it sounds scary.

One likely scenario is that a clot had formed in my leg, causing the pain earlier in the week. It, or some of it, broke loose on Thursday, relieving the leg pain but migrating through the circulatory system until getting lodged in my right lung. If I remember my high school biology correctly, this makes sense. On the way to the heart from the legs, the veins get larger and larger, so a dislodged clot has clear sailing. From the heart, the blood gets pumped to the lungs through an increasingly finer network of blood vessels, and a clot stands a good chance of getting hung up there.

The morphine still isn't doing anything, but my yoga breathing works. Or maybe the morphine is working, and if I didn't have it in my system, I would know what an 8 or 9 on the pain scale really feels like.

I get admitted to a hospital room around 3:00 a.m. I get a morphine pump, which means that every 10 minutes I can press a button and get a small dose. I can't detect any benefit, but whenever I take too deep a breath and remind myself why I'm in the hospital, I press the button. There is a timer built into the pump, so that if you press the button before 10 minutes has elapsed, it just chirps at you.

Not much happens on Friday. We keep adjusting the pain medication higher, to no obvious effect. I take some naps, since I didn't get much sleep the night before. Jan comes to keep me company starting in the mid-morning. My lunch is, against expectations, excellent: grilled salmon, brown rice pilaf with cranberries, broccoli. Dinner is a picnic courtesy of our friends the Morgans. After dinner, I take a walk in the corridors, with my I.V. pole. Just like old times. At this point, I have heard that I could be going home as soon as Sunday or as late as Tuesday. After my walk, the pain begins to ease.

After breakfast on Saturday, I get a full ultrasound scan of both legs, from ankles to groin. Having identified a blood clot in my lungs, we're searching for any more that might be hiding. The results are positive: I have a clot in the leg that had been hurting, and another in the other leg. Since I have already started the treatment for clots, there isn't much to do with the news. And they have decided that I don't have pneumonia, so I might as well go home.

The diagnosis means more medications: I am currently on an injectable blood thinner and a blood thinner in tablet form (coumadin). When my blood reaches the desired level of unclottiness,  I'll just be on the tablet form, but I will then be on that medication for months.

The lung pain is mostly gone, at the moment (Sunday night). Today, it only seems to occur if I have been lying down, and it's never as bad as it was on Friday.

Tomorrow we go back up to Chicago for the regular blood tests and check-in with the doctor. And there are some additional test results to get from my weekend visit to the hospital, to try to identify a cause for the clots. Having cancer (though usually not leukemia) is another factor leading to clots, as is being sedentary. I go for daily walk/jogs, and I move around the house during the day to prepare food or take medications, but maybe I need to take more frequent and purposeful activity breaks.

There are also genetic causes. My brother has had blood clots in his legs. Maybe I have a genetic predisposition to clots that was masked by my low platelet counts during the years I had aplastic anemia and now has a chance to shine. Bodies are very complicated!

Mothers Day (D+65)

Nice day today. We took in a couple of soccer games, as Paul's team won its semifinal and championship games in his club's hometown tournament. Paul took a hard fall in the second of yesterday's games and missed this morning's game with back spasms, but he recovered enough to play some good minutes in the championship game.

I have to protect myself from sunlight. Some sources say it's because sunlight can trigger graft-vs-host disease, and my doctor says it's because I will burn easily. This is why I go for my walk/jog early in the morning or in the evening. Youth soccer games are typically very sunny affairs with no shade to be found. Luckily for me, the boys played on a field with trees on the east and north sides, and an officials tent on the west side, which meant I was always able to find a place to sit out of the sun and take in the game. For two of the weekend's four games, this meant being at the opposite end of the field from most of the action, but it was still a lot of fun to be out watching Paul and his teammates play some beautiful soccer.

Other precautions I need to take, besides avoiding sunlight, all to minimize the risk of catching something:

• Avoid small children (or, as they are known in the transplant world, "disease vectors")
• Avoid people who work with or have small children
• Avoid people who are sick
• Avoid crowds (because you never know who in the crowd might be sick)
• Avoid shaking hands
• Avoid salad bars (because you don't know who preceded you through the line, touching the serving utensils, maybe sneezing on the food...)
• Avoid meat and cheese sliced at a deli (less risky than a salad bar, but still...)
• Avoid yard work, gardening, dusting, and vacuuming (because it kicks up fungi and bacteria)
• Wash and/or sanitize hands frequently (because even with all of the above precautions, you're still touching things -- money, handles -- that are also loaded with microorganisms that a fully functioning immune system can usually handle

As long as I am taking the anti-rejection medication, my immune system is suppressed. So I take a bunch of anti-bacterial, -viral, and-fungal medications, and I take the precautions above.

Tomorrow, Jan and I head back to Chicago for my now-bi-weekly appointment. The highlight is that I'm also having my Hickman Triple Lumen taken out, another sign of progress ("you won't be needing transfusions") and another step closer to normal existence (no more line flushing and extra shower precautions). Jan will also get to meet my doctor in person for the first time.

As for Mothers Day, it was pretty low key. In addition to the soccer games, Jan also got in a couple of naps. I made dinner — baked chicken, roasted white and sweet potatoes, asparagus, salad (spinach from our garden, clementines, glazed walnuts, peppers, mushrooms). We got some flowers, but they have to stay outside — cut flowers, or more precisely the vases of stagnant water in which they sit, are another infection risk we need to avoid. Instead, we got a mass of potted lilies that are sitting on a table on our patio and that Paul can plant soon.

Happy Mothers Day to all you moms out there!

May Day

The scan we did earlier this week of my gallbladder came back negative, which is positive news. There were no signs of blockage or wall thickening or sludge or anything that indicates it should be taken out. It's not even clear, given the new evidence, that the pain and nausea and other from a couple of weeks ago was due to a gallbladder problem. Maybe it was, and the problem has passed, or maybe it was a red herring. I do have gallstones, but so do lots of other people without any negative impact.

So, I get to keep my gallbladder, which means there is no more reason to keep the Hickman Triple Lumen in my chest. It is coming out next Monday morning (May 9), before my now-biweekly Monday afternoon checkup. No visit this coming Monday.

Occasional running partner and local TV sportscaster Aaron Matas interviewed me as part of a story on charity runners and Illinois Marathon. He boiled 45 minutes or so of ums and ers, and some pithy observations, down to a small gem. This broadcast marked the start of a 12-hour  Seeley media trifecta: I was on TV (cameo from Jan), Jan was on the radio, and Paul was on the cover of the local newspaper sports section, by virtue of finishing right next to the winning woman in the Friday night 5K. (Paul wants all to know that even though the picture shows him slightly behind the women's winner, he did kick past her before the actual finish.) If he ever stops loathing to run, he's going to be really fast.

Yesterday was the third running of the Christie Clinic Illinois Marathon. Since Jan is a co-race director, it's been crazy hectic in the Seeley household for the last week — even more than it has been for the last several weeks. So far, it looks like Jan got enough sleep, food, and liquid during the week to stay out of the emergency room on the day after, an improvement over last year.

The race went off extremely well. I missed being as fully, physically involved as I have been the last two years. It's draining, but it's also a kind of high, with great camaraderie, reminiscent of working on a theater production (only bigger). This year, I was confined to the house, both to protect me from exposure to infection and to conserve my energy. I have to keep reminding myself that I am still recovering.

I kept the web site updated as we transformed the home page from come-to-our-race to the-race-is-almost-here to the-race-is-here to it's-done! The last couple of days, I answered one of the race hotlines, and I also pretended to be Jan as I processed a backlog of her email. (If you got a reply from Jan that seemed unusually terse, that's why. It's so hard to find good help.)

In general, I have felt quite good since my second discharge from the hospital. Some new medications for confirmed and potential infections probably help, and my mom has been in town since then as well. She says she's like the umbrella you take with you so it won't rain — I am fine when she's here. She is leaving on Tuesday, and we hope it doesn't start "raining" when she leaves. Besides exercising her maternal medical magic, she has done a lot of cooking and yardwork and bringing-of-tea and general errand-running — a big help.

Looking forward to an excellent May.

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.