So-so night of sleep. I'm getting a lot of liquid during the day intravenously, which means more frequent bathroom trips at night. Also, the early morning visits were not consolidated into one, so I was largely awake since 5 a.m.
Put in 3 miles on the treadmill before breakfast. I was already hooked up to an IV, so I had to wheel the pole across the hall with me. Which brings up an unexpected Kindle bonus -- it fits exactly into the breast pocket on the hospital gown, leaving my hands free to wrangle myself and the pole through two doors and a very narrow passage to get out of my room.
The good news is, I got my run in.
The bad news is, I can't take a shower until the end of the day, because of the long drip time on my chemo (8 hours).
After my run, the nurse comes in. She's wearing a yellow isolation gown and blue gloves.
The good news is, Tuesday is no longer Rectal Swab Day.
The bad news is, I have the organism they have been swabbing for -- which is why they have stopped looking for it -- and I'm back to wearing gowns and gloves when I leave my room, and visitors have to wear the same when they come into the room. No mask for visitors. The organism is VRE (Vancomycin-Resistant Enterococci). Very common in hospitals. I am colonized, but not infected. No treatment for now, but it's one more thing to keep an eye on post-transplant. The new rules are going to make my runs much warmer, especially the gloves.
Some telecommuting. Working on a journals app for both iPhone and iPad. First iPad design!
Visit from someone to issue some tests as part of the morbidly named Co-Morbidity Study that I consented to participate in. I believe the point of the study is to assess pre- and post-transplant activity and fitness levels in transplant patients over 50 and to see how those levels correlate to ... various outcomes. There are a bunch of surveys I haven't filled out yet. This woman was here to administer a couple of physical tests: a grip strength test, and a 5-yard walk test. I believe I passed!
A glance at the first survey shows some questions that will be hard to answer. Compared to one year ago, how would you rate your health in general right now? The choices range from Much better than one year ago to Much worse than one year ago. What's the right answer? In most ways, I'm healthier than most of the staff. But I am being treated for acute myeloid leukemia, which I did not have a year ago.
Tried to order burritos for lunch. Couldn't get either the listed Chipotle Black Bean Burrito or the secret bean and cheese burrito I got a couple of nights ago. Time for a new recipe -- Chicken, Bean, and Cheese Quesadillas. Delicious!
Good afternoon of telecommuting.
No side effects, as of one hour after the end of the chemo. Promising!
Dinner (baked fish, lemon-pepper rice, broccoli!, carrots, sweet potato bread).
Phone calls, e-mail, shower...
A good day!
Monday, February 28, 2011
Sunday, February 27, 2011
D-5
A good night of sleep, maybe the best I've had here. The only disruptions were the midnight and 4 a.m. vitals checks.
Today, the doctors are taking several measures to head off a repeat of yesterday's (relatively mild) side effects. I will receive ahead of time some of the medications I got yesterday to relieve the hives and chest tightness, and I will receive the Campath over eight hours instead of four.
My brown tongue is less brown -- there is less brown overall, and some of the remaining brown is more coffee-colored than chocolate-colored.
A visit from the attending around midday, who clears up some minor misunderstandings I had. The heart sonogram I had on Friday was the echocardiogram, while the picture I have of my chest covered in leads was an EKG. The results of both are, in her words, "boring." Which means "good."
The other misunderstanding I had was about the number of stem cells collected. All along, I have been hearing numbers like 3 million (ideal + backup) cells, 2 million (ideal), 1.7 million (what they actually collected). I was thinking that was the number of cells collected, which seems like a lot. But cells are really small, and those numbers describe many more cells than I thought, because they refer to the number of cells per kilogram of my weight.
I could raise the number of cells we have per kilogram by losing a lot of weight over the next five days, but I'm sure that's a bad idea.
Halfway through the eight-hour drip, still no side effects. Good lunch, completely from my personal provisions: lentil soup, almond butter on ak-mak crackers, dried peaches, a little chocolate, water.
A visit from Dave and Allison, once across-the-street neighbors so close we joked that we lived in one house with a road running through it. They moved to Oswego years ago, but we have stayed in touch and our oldest sons are still good friends. They brought some of David's famous sweet potato bread and some McIntosh apples, and fresh-squeezed orange juice from the Au Bon Pail downstairs. (Thanks, Dave and Allison!)
Seven hours into the drip, still no side effects.
Seven and half hours in -- spoke too soon. Mild hives on the lower arms. Getting some Benadryl and steroids.
Dinner off the menu -- no cooking tonight. Chicken, stuffing, corn, grapes, and broccoli, which was erroneously banned but is allowed by a doctor's note. I went over this with the call-taker. She said it was fine. Dinner arrived later than the usual 45 minutes, with an apology and an explanation. They decided they had to make a call about the broccoli, to make sure, and it took a little while to clear up their confusion. I thanked her for her caution, and she left. I lifted the cover -- no broccoli! I called Food Service, and they said they would send it right up. 45 minutes later, after I was done with dinner, the broccoli showed up. "Too late. But you can take my tray." I also had some of the sweet potato bread, warmed in the microwave. The nurse who warmed it was jealous.
Getting ready to go to sleep. Pretty restful day.
Today, the doctors are taking several measures to head off a repeat of yesterday's (relatively mild) side effects. I will receive ahead of time some of the medications I got yesterday to relieve the hives and chest tightness, and I will receive the Campath over eight hours instead of four.
My brown tongue is less brown -- there is less brown overall, and some of the remaining brown is more coffee-colored than chocolate-colored.
A visit from the attending around midday, who clears up some minor misunderstandings I had. The heart sonogram I had on Friday was the echocardiogram, while the picture I have of my chest covered in leads was an EKG. The results of both are, in her words, "boring." Which means "good."
The other misunderstanding I had was about the number of stem cells collected. All along, I have been hearing numbers like 3 million (ideal + backup) cells, 2 million (ideal), 1.7 million (what they actually collected). I was thinking that was the number of cells collected, which seems like a lot. But cells are really small, and those numbers describe many more cells than I thought, because they refer to the number of cells per kilogram of my weight.
I could raise the number of cells we have per kilogram by losing a lot of weight over the next five days, but I'm sure that's a bad idea.
Halfway through the eight-hour drip, still no side effects. Good lunch, completely from my personal provisions: lentil soup, almond butter on ak-mak crackers, dried peaches, a little chocolate, water.
A visit from Dave and Allison, once across-the-street neighbors so close we joked that we lived in one house with a road running through it. They moved to Oswego years ago, but we have stayed in touch and our oldest sons are still good friends. They brought some of David's famous sweet potato bread and some McIntosh apples, and fresh-squeezed orange juice from the Au Bon Pail downstairs. (Thanks, Dave and Allison!)
Seven hours into the drip, still no side effects.
Seven and half hours in -- spoke too soon. Mild hives on the lower arms. Getting some Benadryl and steroids.
Dinner off the menu -- no cooking tonight. Chicken, stuffing, corn, grapes, and broccoli, which was erroneously banned but is allowed by a doctor's note. I went over this with the call-taker. She said it was fine. Dinner arrived later than the usual 45 minutes, with an apology and an explanation. They decided they had to make a call about the broccoli, to make sure, and it took a little while to clear up their confusion. I thanked her for her caution, and she left. I lifted the cover -- no broccoli! I called Food Service, and they said they would send it right up. 45 minutes later, after I was done with dinner, the broccoli showed up. "Too late. But you can take my tray." I also had some of the sweet potato bread, warmed in the microwave. The nurse who warmed it was jealous.
Getting ready to go to sleep. Pretty restful day.
Name the Parrot
After my colleagues sent me a pirate cap, to cover up my then soon to be and now bald head, sister Mara decided she had to bring an essential accessory.
He or she (I'll say "it" for now) perches on the IV pole and is therefore my nearly constant companion. The nurses don't mind, and some specifically mention that they like it. On my last transport to a procedure, a couple of days ago, I was greeted by name by someone coming up behind me into the elevator.
"How did you know it was me?" I asked, already knowing the answer.
"I think a little bird told her," said someone else already on the elevator.
(I was wearing the pirate do-rag, too, so I was all gussied up for the trip.)
Several people have asked what the parrot's name is. I don't know.
I have thought of one name, relevant but twisted, but I don't want to bias this very intelligent and creative audience by sharing it, yet.
The floor is now open for nominations. You may justify your nomination or let its brilliance speak for itself. Unlike the parrot, which is mute.
= = =
A note on the comment mechanism: Quite a few people have had trouble leaving comments, including me. My workaround is to select the profile (even if already selected), then select Preview, and repeat those two steps until a preview appears. Then, within the Preview box, there is an option to post. Once I see the preview, the post option within the preview always works. If that process doesn't work for you, you can also send me an e-mail and I will post it for you, or you could try using a different browser.
He or she (I'll say "it" for now) perches on the IV pole and is therefore my nearly constant companion. The nurses don't mind, and some specifically mention that they like it. On my last transport to a procedure, a couple of days ago, I was greeted by name by someone coming up behind me into the elevator.
"How did you know it was me?" I asked, already knowing the answer.
"I think a little bird told her," said someone else already on the elevator.
(I was wearing the pirate do-rag, too, so I was all gussied up for the trip.)
Several people have asked what the parrot's name is. I don't know.
I have thought of one name, relevant but twisted, but I don't want to bias this very intelligent and creative audience by sharing it, yet.
The floor is now open for nominations. You may justify your nomination or let its brilliance speak for itself. Unlike the parrot, which is mute.
= = =
A note on the comment mechanism: Quite a few people have had trouble leaving comments, including me. My workaround is to select the profile (even if already selected), then select Preview, and repeat those two steps until a preview appears. Then, within the Preview box, there is an option to post. Once I see the preview, the post option within the preview always works. If that process doesn't work for you, you can also send me an e-mail and I will post it for you, or you could try using a different browser.
Saturday, February 26, 2011
D-6
I spend part of the morning getting to know my new Kindle. I had been hesitant about getting one, since I have no trouble not reading the books and magazines I already have. A Kindle could just be a more expensive way to not read. But a couple of chapters into my first book -- When You Are Engulfed in Flames, by David Sedaris -- I'm pretty excited about it.
I also get a visit from one of the Infectious Diseases doctors who was working on my infections last week. He says everything looks good on the infection front -- no fevers, the pneumonic blob in my lungs is smaller. He hasn't heard about the sinus scan.
In the early afternoon, I get a visit from a Champaign friend and his son, who is a school soccer teammate of Paul's. They are up in the Chicago area for soccer training and made a significant detour to stop by. Get some good Kindle tips. (Thanks, Rob and Randall!)
During their visit, the attending physician stops by to confirm that all of yesterday's tests came back with good news, including an improved sinus state and a clean bill of health on the heart sonogram.
Near the end of the chemo drip, I notice a slight tightening of my breathing passages. It reminds me of when you step out into really cold weather, and your airway hasn't yet adjusted. It is not alarming, but it is one of the side effects that we're supposed to make known immediately. I let the nurse know, and she says she will let the doctor know.
A little later, I notice a slight itch on my upper back. I reach to give a light scratch, and realize that my skin is bumpy. Another page, another nurse. I'm thinking, this must be those hives I've been reading about. She confirms.
Luckily, they are not tormentingly itchy.
I also get a visit from one of the Infectious Diseases doctors who was working on my infections last week. He says everything looks good on the infection front -- no fevers, the pneumonic blob in my lungs is smaller. He hasn't heard about the sinus scan.
In the early afternoon, I get a visit from a Champaign friend and his son, who is a school soccer teammate of Paul's. They are up in the Chicago area for soccer training and made a significant detour to stop by. Get some good Kindle tips. (Thanks, Rob and Randall!)
During their visit, the attending physician stops by to confirm that all of yesterday's tests came back with good news, including an improved sinus state and a clean bill of health on the heart sonogram.
Near the end of the chemo drip, I notice a slight tightening of my breathing passages. It reminds me of when you step out into really cold weather, and your airway hasn't yet adjusted. It is not alarming, but it is one of the side effects that we're supposed to make known immediately. I let the nurse know, and she says she will let the doctor know.
A little later, I notice a slight itch on my upper back. I reach to give a light scratch, and realize that my skin is bumpy. Another page, another nurse. I'm thinking, this must be those hives I've been reading about. She confirms.
 |
| So that's what hives look like. Sexy! |
Doctor comes in to check on me. Prescribes a few things: Benadryl, Pepcid, and some kind of steroid.
Someone brings in a nebulizer to ease the breathing, which never got very tight and was already easing on its own. I can't tell if the nebulizer makes a difference.
As soon as the nebulization is done, in rolls a portable echocardiogram machine, to see how my heart is doing.
Haven't received the echocardiogram report, yet.
I wonder which side effects have signed up for D-5.
Around 6:00, I head for the treadmill for my first Kindle-enhanced run. It's a great combination. I can push the font size up to a point that allows me to read while running, and the page turning buttons are easy to hit while running. I still occasionally go forward a page when I want to go back, because I expect the go-back button to mirror on the left the go-forward button on the right. Instead, both left and right sides have little go-back buttons above larger go-forward buttons. Overall, it does make the time pass more quickly.
My treadmill distance is 3.2, 2 miles of it running at a little over 14 min/mile pace. I run or walk at whatever pace will get my heart rate to 140, and today that was 14:15. Since my pneumonia diagnosis, I think I have only missed one day of running or walking. Today's was the longest and fastest since before the Bad Week. Probably a combination of being further recovered, getting two bags of blood yesterday, and having a Kindle.
Now, I'm waiting for Food Service to deliver the ingredients for Spicy Asian Noodles.
Later, a few phone calls, maybe some online Scrabble, and then a contest between Saturday Night Live and Ambien. My money is on Ambien.
 |
| I think I have hives on my dome. Also sexy! |
 |
| No comment. |
Haven't received the echocardiogram report, yet.
I wonder which side effects have signed up for D-5.
Around 6:00, I head for the treadmill for my first Kindle-enhanced run. It's a great combination. I can push the font size up to a point that allows me to read while running, and the page turning buttons are easy to hit while running. I still occasionally go forward a page when I want to go back, because I expect the go-back button to mirror on the left the go-forward button on the right. Instead, both left and right sides have little go-back buttons above larger go-forward buttons. Overall, it does make the time pass more quickly.
My treadmill distance is 3.2, 2 miles of it running at a little over 14 min/mile pace. I run or walk at whatever pace will get my heart rate to 140, and today that was 14:15. Since my pneumonia diagnosis, I think I have only missed one day of running or walking. Today's was the longest and fastest since before the Bad Week. Probably a combination of being further recovered, getting two bags of blood yesterday, and having a Kindle.
Now, I'm waiting for Food Service to deliver the ingredients for Spicy Asian Noodles.
Later, a few phone calls, maybe some online Scrabble, and then a contest between Saturday Night Live and Ambien. My money is on Ambien.
Recipes
Baked Beans
Order: 1 refried beans (they will be pinto beans in tomato sauce), 1-2 ketchup packets, 1 brown sugar, 1-2 pepper packets.
Add ketchup, sugar, and pepper to the beans, to taste. Mix.
Spicy Asian Noodles
 |
| With chicken and carrots |
Sauce: Put peanut butter in the bowl. Add soy sauce, 1/2 of the honey and 1 hot sauce. Stir and taste. Add honey and hot sauce to taste. Add hot water and stir until you reach the desired consistency.
Chop the scrambled egg. Put sauce and egg on the noodles. Mix. Add broccoli (and other vegetables, if desired) on top. Sprinkle with lemon juice and black pepper to taste.
Chicken, Bean, and Cheese Quesadillas
 |
| Assembled, not yet microwaved. |
Order: grilled chicken breast, 2 pork and beans, 2 string cheese, 2 taco sauce, 2 corn or wheat tortillas, 1 sour cream (optional).
Slice the chicken into small strips. Shred the string cheese by hand. Cover half of each tortilla with chicken, beans, cheese, and taco sauce. Add half of the sour cream to each, if desired. Fold each tortilla over. Take the plate down to the nurse station and ask someone to microwave it for 30 seconds.
Chicken Stir Fry with Extra Vegetables
Order: stir fry (chicken with vegetables), broccoli, carrots, green beans.
Add extra vegetables to the stir fry. Mix.
Lemon Pepper Rice
Order: 1 white rice, 1 lemon packet, 1-2 pepper packets.
Add lemon, and pepper to taste. Mix.
Banana Cream Oatmeal (or Cream of Wheat)
Order: 1 oatmeal or cream of wheat, 1 banana, 1 vanilla ice cream, 1 brown sugar (optional).
Dice half of the banana. Add to the hot cereal and mix it in. Add 2 or 3 spoonfuls of ice cream. Optionally, sprinkle with brown sugar.
Mocha
Order: 1 coffee (regular or decaf), 1 packet hot chocolate (regular or sugar-free), 1 vanilla ice cream.
Mix the hot chocolate powder into the coffee. Stir. Add a spoonful or two of vanilla ice cream on top.
D-7
Friday was D-7, which means next Friday is transplant day.
D-7 means a new set of helpful poisons start running through me, and I get a new team of in-patient doctors. I am now under the direct care of the transplant service. Same nurses, same great food.
(Note: I wrangled a not-on-the-menu bean and cheese tortilla out of Food Service last night, after getting bumped up a couple of levels in the call chain over my disappointment that we still don't have the Chipotle Black Bean Burrito, which is on the menu but perpetually out of stock. It was very good, and the manager personally delivered it. And left his card.)
My new chemo drugs...
Alemtuzumab (Campath)
Possible side effects: itching, hives, swelling of face and hands, swelling or tingling in mouth or throat, chest tightness, trouble breathing; anxiety, restlessness, nervousness, trouble sleeping; change in quantity or frequency of urination; changes in vision; fast, pounding, or uneven heartbeat; fever, chills, cough, sore throat, body aches; lightheadedness, fainting; muscle pain, tenderness, weakness; numbness, tingling, or burning pain in arms, hands, legs, or feet; shortness of breath, cold sweat, bluish-colored skin; skin rash; sores or white patches on lips, mouth, throat; swelling of hands, ankles, feet; tremors; unusual bleeding or bruising; unusual tiredness or weakness; headache; loss of appetite; nausea, vomiting, diarrhea, stomach pain.
Campath is the only chemo drug I received on D-7, and the only side effect yesterday was a brief spell of chills.
Melphalan
Possible side effects: itching, hives, swelling of face and hands, swelling or tingling in mouth or throat, chest tightness, trouble breathing; bloody or black, tarry stools; fast heartbeat; fever, chills, cough; lightheadedness, fainting; new lumps or growths under your skin; severe nausea and vomiting, seizure, or severe muscle stiffness; skin rash; sores or white patches on lips, mouth, throat; trouble breathing; unusual bleeding, bruising, or weakness; yellowing of your skin or the whites of your eyes.
Fludarabine
Possible side effects: blood in your urine, pain in sides or joints; confusion, extreme tiredness, fainting, trouble seeing; cough, chest pain, trouble breathing; fever, chills, sore throat, other signs of infection; numbness, tingling, or burning pain in arms, hands, legs, or feet; skin rash; unusual bleeding, bruising, or weakness.
These drugs are so powerful, you don't even have to take them to feel some of their side effects. All you have to do is read about the side effects to lose your appetite, feel shortness of breath, or have a fast heartbeat. Don't worry. However, if reading the above causes tarry stools, please consult a doctor immediately.
D-7 brought my first visit with transplant team of doctors. The attending physician poured a lot of information at me. I'll have six days of chemo, on days D-7 to D-2. Most patients tolerate the chemo well, which means they do not experience that sickening list of side effects, or at least not much. On one of these days, I'll receive the one (I'm guessing Melphalan, from the listed side effects) that often causes mouth and throat sores. I've heard from other patients and from the attending that a six-hour course of oral cryotherapy (otherwise known as sucking on ice) is very effective at keeping this side effect at bay.
D-1 is a "rest" day in the sense that none of the chemo drugs are being administered. They're still coursing through your system and doing their work.
D Day, next Friday, is Transplant Day, sometimes referred to by patients as Second Birthday or ReBirthday.
Two birthdays in two weeks. How lucky is that?
D-7 means a new set of helpful poisons start running through me, and I get a new team of in-patient doctors. I am now under the direct care of the transplant service. Same nurses, same great food.
(Note: I wrangled a not-on-the-menu bean and cheese tortilla out of Food Service last night, after getting bumped up a couple of levels in the call chain over my disappointment that we still don't have the Chipotle Black Bean Burrito, which is on the menu but perpetually out of stock. It was very good, and the manager personally delivered it. And left his card.)
My new chemo drugs...
Alemtuzumab (Campath)
Possible side effects: itching, hives, swelling of face and hands, swelling or tingling in mouth or throat, chest tightness, trouble breathing; anxiety, restlessness, nervousness, trouble sleeping; change in quantity or frequency of urination; changes in vision; fast, pounding, or uneven heartbeat; fever, chills, cough, sore throat, body aches; lightheadedness, fainting; muscle pain, tenderness, weakness; numbness, tingling, or burning pain in arms, hands, legs, or feet; shortness of breath, cold sweat, bluish-colored skin; skin rash; sores or white patches on lips, mouth, throat; swelling of hands, ankles, feet; tremors; unusual bleeding or bruising; unusual tiredness or weakness; headache; loss of appetite; nausea, vomiting, diarrhea, stomach pain.
Campath is the only chemo drug I received on D-7, and the only side effect yesterday was a brief spell of chills.
Melphalan
Possible side effects: itching, hives, swelling of face and hands, swelling or tingling in mouth or throat, chest tightness, trouble breathing; bloody or black, tarry stools; fast heartbeat; fever, chills, cough; lightheadedness, fainting; new lumps or growths under your skin; severe nausea and vomiting, seizure, or severe muscle stiffness; skin rash; sores or white patches on lips, mouth, throat; trouble breathing; unusual bleeding, bruising, or weakness; yellowing of your skin or the whites of your eyes.
Fludarabine
Possible side effects: blood in your urine, pain in sides or joints; confusion, extreme tiredness, fainting, trouble seeing; cough, chest pain, trouble breathing; fever, chills, sore throat, other signs of infection; numbness, tingling, or burning pain in arms, hands, legs, or feet; skin rash; unusual bleeding, bruising, or weakness.
These drugs are so powerful, you don't even have to take them to feel some of their side effects. All you have to do is read about the side effects to lose your appetite, feel shortness of breath, or have a fast heartbeat. Don't worry. However, if reading the above causes tarry stools, please consult a doctor immediately.
D-7 brought my first visit with transplant team of doctors. The attending physician poured a lot of information at me. I'll have six days of chemo, on days D-7 to D-2. Most patients tolerate the chemo well, which means they do not experience that sickening list of side effects, or at least not much. On one of these days, I'll receive the one (I'm guessing Melphalan, from the listed side effects) that often causes mouth and throat sores. I've heard from other patients and from the attending that a six-hour course of oral cryotherapy (otherwise known as sucking on ice) is very effective at keeping this side effect at bay.
D-1 is a "rest" day in the sense that none of the chemo drugs are being administered. They're still coursing through your system and doing their work.
D Day, next Friday, is Transplant Day, sometimes referred to by patients as Second Birthday or ReBirthday.
Two birthdays in two weeks. How lucky is that?
Friday, February 25, 2011
Visit from the President
Not that President, although that would be great. Anyone have some connections? I am in his hometown, after all. And I did vote for him, enthusiastically. And I do have some constructive suggestions. Of course.
No, I just had a good visit with the new president of the medical center that has been my home these last 6+ weeks.
No, I just had a good visit with the new president of the medical center that has been my home these last 6+ weeks.
I wrote her a welcome note, and urged her to consider non-medical dimensions (food service, patient transportation) in her stated goal of improving the patient experience.
She wrote back, and asked if she could come and talk with me about my observations and ideas. Of course!
It was a good talk. She asked about how I am doing, what I do for a living, and how my family is doing. And then we talked about the needs-improvement aspects of the patient experience, from my perspective.
She comes to this position from other hospitals that handle food and transportation better than they do here. So, not only does she know it can be better, but she knows specific ways that other hospitals have addressed these particular issues. Very encouraging!
It's also encouraging that the person at the very top, less than a week into a new job, values patient input enough to take time out of what has to be a very busy week to listen to a patient.
I hope to be out of here before the kinds of systemic changes required could be implemented, but I am optimistic that the full spectrum of patient care, and especially the non-medical but still health-related dimensions, is going to get better.
You Can't Unsalt Food
I know I don't know all the constraints the hospital food service operates under, and I know it can't cater to me. But I think there are a few simple changes that would be easy to implement, would raise the nutritional quality of the menu, and would be popular with enough patients to justify their addition.
Last week, I got a visit from Food Service -- I think she was a manager. I don't know if it's because I have been asking twice daily for the Chipotle Black Bean Burrito (hidden on the gluten-free menu, for some reason), or if I was the target of a random sampling. (They do not have the burrito in stock, and I have promised to ask for it and make them check for it every day until it's in.)
I wanted to start with what was good about the menu -- a decent variety of breakfast choices, a good selection of lean (meat and dairy) protein choices, a range of plain vegetables that are not overcooked, some fresh fruit. But the manager wanted to hear what I was unhappy about, so I told her what I would like to see.
1. Less salt. One of the reasons I have a hard time getting through meals is that they are too salty for my taste. I know many Americans are too fond of salt, so this high-salt diet may cater to the majority of patients. However, it is easy for patients to add salt to a dish if it isn't salty enough for them, but I can't unsalt a dish.
2. More whole grain fiber. The menu currently has Cheerios, Frosted Mini Wheats, granola, bran flakes, wheat bagel, whole wheat bread, and an apple bran muffin. These aren't bad options, but they are focused on breakfast, and some are only nominal sources of fiber. Consider adding: brown rice, multigrain wraps, multigrain chips.
3. More legumes. The menu currently has red beans and rice, and chili. (Both are too salty, of course.) Consider adding: baked beans, refried beans, bean burrito, black bean soup, lentil soup.
There is (theoretically) a bean burrito, but it's on the gluten-free menu that many patients (and some call-takers) don't realize is open to patients on a regular diet. Also, it has been out of stock since I started ordering it more than a week ago. This past Monday, I received a call back from a call-taker telling me the burritos would be in by Tuesday or Wednesday. As of Thursday night, still no burritos.
The manager also told me that there are baked beans on the menu. This is not true, if your definition of "on the menu" is "visible to a person looking at the menu." However, through some back-and-forth with one of the call-takers, I have determined that you can order "pork and beans," and you will receive what most of us would consider baked beans. So it's on the menu in the sense that you can order it if you know what to call it. It's a small side dish, so I have learned I should order two. There is also another hidden item, which the call-taker described as refried beans but turned out to be un-refried pinto beans in a tomato sauce. With a little ketchup and brown sugar, I made something close to baked beans. (There will be a later post containing the recipes I have come up with, using only items that I can order.)
Overall, my visitor from Food Service seemed interested in my feedback and open to suggestions. She took notes.
With the exception of the salt, I have been able to address my complaints by supplementing the Food Service offerings with outside food -- bean and lentil soups, whole grain crackers, almond butter, Sun Chips, dried fruit, whole-grain cereals, homemade whole wheat fig bars (incredibly good). However, a patient should not have to go outside the hospital offerings to eat a healthy diet, so I'm hoping Food Service will make a few adjustments, someday.
Bon Appetit!
Last week, I got a visit from Food Service -- I think she was a manager. I don't know if it's because I have been asking twice daily for the Chipotle Black Bean Burrito (hidden on the gluten-free menu, for some reason), or if I was the target of a random sampling. (They do not have the burrito in stock, and I have promised to ask for it and make them check for it every day until it's in.)
I wanted to start with what was good about the menu -- a decent variety of breakfast choices, a good selection of lean (meat and dairy) protein choices, a range of plain vegetables that are not overcooked, some fresh fruit. But the manager wanted to hear what I was unhappy about, so I told her what I would like to see.
1. Less salt. One of the reasons I have a hard time getting through meals is that they are too salty for my taste. I know many Americans are too fond of salt, so this high-salt diet may cater to the majority of patients. However, it is easy for patients to add salt to a dish if it isn't salty enough for them, but I can't unsalt a dish.
2. More whole grain fiber. The menu currently has Cheerios, Frosted Mini Wheats, granola, bran flakes, wheat bagel, whole wheat bread, and an apple bran muffin. These aren't bad options, but they are focused on breakfast, and some are only nominal sources of fiber. Consider adding: brown rice, multigrain wraps, multigrain chips.
3. More legumes. The menu currently has red beans and rice, and chili. (Both are too salty, of course.) Consider adding: baked beans, refried beans, bean burrito, black bean soup, lentil soup.
There is (theoretically) a bean burrito, but it's on the gluten-free menu that many patients (and some call-takers) don't realize is open to patients on a regular diet. Also, it has been out of stock since I started ordering it more than a week ago. This past Monday, I received a call back from a call-taker telling me the burritos would be in by Tuesday or Wednesday. As of Thursday night, still no burritos.
The manager also told me that there are baked beans on the menu. This is not true, if your definition of "on the menu" is "visible to a person looking at the menu." However, through some back-and-forth with one of the call-takers, I have determined that you can order "pork and beans," and you will receive what most of us would consider baked beans. So it's on the menu in the sense that you can order it if you know what to call it. It's a small side dish, so I have learned I should order two. There is also another hidden item, which the call-taker described as refried beans but turned out to be un-refried pinto beans in a tomato sauce. With a little ketchup and brown sugar, I made something close to baked beans. (There will be a later post containing the recipes I have come up with, using only items that I can order.)
Overall, my visitor from Food Service seemed interested in my feedback and open to suggestions. She took notes.
With the exception of the salt, I have been able to address my complaints by supplementing the Food Service offerings with outside food -- bean and lentil soups, whole grain crackers, almond butter, Sun Chips, dried fruit, whole-grain cereals, homemade whole wheat fig bars (incredibly good). However, a patient should not have to go outside the hospital offerings to eat a healthy diet, so I'm hoping Food Service will make a few adjustments, someday.
Bon Appetit!
Thursday, February 24, 2011
The New New New New Plan
Once upon a time, the plan was induce remission, take a short break outside the hospital, and the return for a stem cell transplant. The break is good psychologically and physically. The physical part is that your own immune system can attack infections that may have taken advantage of its previously weakened state, providing a better starting point. The psychological advantages are obvious -- being in a hospital is inherently stressful, even when nothing is going wrong.
Then the many doctors discussing my case decided that my infections argued against going straight to transplant, at least on a schedule tight enough to make it reasonable to extend Mara's schedule by a couple of days. So she was put back on her original schedule, and we're back to seeing if my counts start coming back once the infections are being managed.
This past Monday, the plan was to give me Neupogen for four days and see if that boosts my counts to leave-the-hospital levels. If not, go straight to transplant. If so, take a break. Decision to be made on Thursday.
On Tuesday, the doctors determine that they didn't get quite as many stem cells from Mara as they had hoped. Her age is a factor, as is the fact that I outweigh her by as much as I do. There's only so much she can give, and she gave it all. It's enough to do a transplant safely, but it might stretch out my recovery a little. This adds some weight to the take-a-break side of the scale. A break opens up the possibility of bringing Mara back for another donation round, after she recovers. A break, assuming my immune system is up to it, also gives my body a chance to keep beating down any infections I have, known and unknown. Decision day is still Thursday.
On Wednesday, the plan is to extend the Neupogen injections a full week and make a decision next Monday.
Today, the plan is to go straight to transplant. My counts are not moving as much as they hoped. I appear to have the current infections in check -- several consecutive days without a fever, feeling good. Tomorrow, I start the conditioning round of chemotherapy. A week from Friday, transplant.
So that's The Plan. It is more firm than any previous plan, or choice of plans. It's basically back to Monday's plan, and we have arrived at Monday's plan's decision point.
I'm ready. I'm not worried about the psychological break I'm not going to get. I know what it's like to be at less than full psychological strength, and I'm far from there. I am strong right now. I'm a little concerned about the infections I'm clearing up, but I trust the doctors. Also, the longer we wait, especially in a hospital, the more likely I am to catch another infection. And, the sooner I get the transplant, the sooner I'm out of here.
Let's go!
I got half of the remission right -- no detectable leukemia -- but it's not remission unless the blood counts build back up. So a new plan was floated. It might make sense to go straight to transplant. As part of this plan, there was a potential plan to postpone Mara's donation by a couple of days so that my conditioning chemotherapy would end as her donation was ending and I could get fresh stem cells, not frozen.
Then the many doctors discussing my case decided that my infections argued against going straight to transplant, at least on a schedule tight enough to make it reasonable to extend Mara's schedule by a couple of days. So she was put back on her original schedule, and we're back to seeing if my counts start coming back once the infections are being managed.
This past Monday, the plan was to give me Neupogen for four days and see if that boosts my counts to leave-the-hospital levels. If not, go straight to transplant. If so, take a break. Decision to be made on Thursday.
On Tuesday, the doctors determine that they didn't get quite as many stem cells from Mara as they had hoped. Her age is a factor, as is the fact that I outweigh her by as much as I do. There's only so much she can give, and she gave it all. It's enough to do a transplant safely, but it might stretch out my recovery a little. This adds some weight to the take-a-break side of the scale. A break opens up the possibility of bringing Mara back for another donation round, after she recovers. A break, assuming my immune system is up to it, also gives my body a chance to keep beating down any infections I have, known and unknown. Decision day is still Thursday.
On Wednesday, the plan is to extend the Neupogen injections a full week and make a decision next Monday.
Today, the plan is to go straight to transplant. My counts are not moving as much as they hoped. I appear to have the current infections in check -- several consecutive days without a fever, feeling good. Tomorrow, I start the conditioning round of chemotherapy. A week from Friday, transplant.
So that's The Plan. It is more firm than any previous plan, or choice of plans. It's basically back to Monday's plan, and we have arrived at Monday's plan's decision point.
I'm ready. I'm not worried about the psychological break I'm not going to get. I know what it's like to be at less than full psychological strength, and I'm far from there. I am strong right now. I'm a little concerned about the infections I'm clearing up, but I trust the doctors. Also, the longer we wait, especially in a hospital, the more likely I am to catch another infection. And, the sooner I get the transplant, the sooner I'm out of here.
Let's go!
Chocolate or Fungus?
This isn't a question about which I prefer.
I am a big mushroom fan -- salads, omelets, soups, pizza -- though I am not a mushroom connoisseur. I know the difference between a portobello and a shitake, but I have never gone out of my way to eat a porcini, oyster, chanterelle, or morel.
Still, as much as I like mushrooms, good chocolate, especially dark chocolate, is its own sanctified food group for me. (But please don't send me any more, at least not now. I have a hefty supply.) I am sure this is not a rare preference.
I look at mushrooms differently now. My fungal pneumonia and fungal oral infection have taken the "fun" out of fungus for me. Sure, some of them look cute and harmless and round and white there in the produce aisle, but other members of the family stalk hospitals looking for defenseless bodies to invade.
Which brings me to my tongue. The first time the ENT docs came to look at my gum sore, he recoiled a little when I stuck out my tongue.
"How long has your tongue looked like that?"
"Probably since I just finished a chocolate pudding."
He was OK with that, and proceeded with the investigation that eventually led to oral surgery. I took a picture, because I thought it was funny that it freaked him out a little. (He more than got revenge.)
Last night, at the end of a wonderful birthday, I had a couple of exquisite chocolates for dessert. (Thanks, Mara!)
When I was brushing my teeth a little later, I noticed that my tongue looked a lot like the picture above. Chocolate, I thought. I tried brushing my tongue -- no change. The saline mouthwash I use had no effect. Upon closer inspection in the mirror, my tongue appeared to have a slightly spongy texture, but it was hard to say. The brown color was definitely in and not on the tongue.
I called the nurse to take a look, who put in a call to the night doctor, who wasn't sure what it was but prescribed an anti-fungal lozenge. Curse you, fiendish fungi!
I have to believe that this is a new development -- that the initial brown tongue really was chocolate pudding, and that this current discoloration is something new. Doctors have been looking in my mouth several times a day over the last week, and surely they would have mentioned this discoloration.
This morning, my tongue is still brown. It's clearly not a chocolate-coated tongue.
I am a big mushroom fan -- salads, omelets, soups, pizza -- though I am not a mushroom connoisseur. I know the difference between a portobello and a shitake, but I have never gone out of my way to eat a porcini, oyster, chanterelle, or morel.
Still, as much as I like mushrooms, good chocolate, especially dark chocolate, is its own sanctified food group for me. (But please don't send me any more, at least not now. I have a hefty supply.) I am sure this is not a rare preference.
I look at mushrooms differently now. My fungal pneumonia and fungal oral infection have taken the "fun" out of fungus for me. Sure, some of them look cute and harmless and round and white there in the produce aisle, but other members of the family stalk hospitals looking for defenseless bodies to invade.
Which brings me to my tongue. The first time the ENT docs came to look at my gum sore, he recoiled a little when I stuck out my tongue.
"How long has your tongue looked like that?"
"Probably since I just finished a chocolate pudding."
He was OK with that, and proceeded with the investigation that eventually led to oral surgery. I took a picture, because I thought it was funny that it freaked him out a little. (He more than got revenge.)
Last night, at the end of a wonderful birthday, I had a couple of exquisite chocolates for dessert. (Thanks, Mara!)
When I was brushing my teeth a little later, I noticed that my tongue looked a lot like the picture above. Chocolate, I thought. I tried brushing my tongue -- no change. The saline mouthwash I use had no effect. Upon closer inspection in the mirror, my tongue appeared to have a slightly spongy texture, but it was hard to say. The brown color was definitely in and not on the tongue.
I called the nurse to take a look, who put in a call to the night doctor, who wasn't sure what it was but prescribed an anti-fungal lozenge. Curse you, fiendish fungi!
I have to believe that this is a new development -- that the initial brown tongue really was chocolate pudding, and that this current discoloration is something new. Doctors have been looking in my mouth several times a day over the last week, and surely they would have mentioned this discoloration.
This morning, my tongue is still brown. It's clearly not a chocolate-coated tongue.
A quick Google tells me that Black Tongue is an unsightly (I'll say!) but harmless condition, sometimes caused by prolonged use of broad-spectrum antibiotics (which I am on). That's reassuring, but it's still gross.
Chocolate or fungus? In this case, probably neither, or maybe some of each.
Update: Apparently, I have had a brown tongue for at least a week. It's so common that nobody thought to mention it.
Wednesday, February 23, 2011
A Happy Birthday
[This post is going to be amended multiple times as I remember (or Jan reminds me of) gifts and kindnesses that I will surely forget to mention the first time through. It was an overwhelming (in a good way) and humbling outpouring of love and care.]
On Monday, Paul's best friend Andy came up with his mom Janelle. He had the day off from school, and he chose to use it supporting his friend and friend's family. (Thanks, Andy!)
Tuesday, the day before my birthday, I got a visit from Shannon, a nurse in the neonatal unit here and the daughter of a colleague at HK. A card from the Zoll family, a card and gift card from the Finance department, and some excellent mint chocolates, which were delicious and are now gone.
Which brings me to today. Midnight vitals, "Happy Birthday, Mr. Seeley."
7 a.m., birthday greetings from Paul.
8 a.m., regular morning call from Jan.
"What would be the best birthday present?"
Hmmm. To magically not be sick would be great, but that's not in the cards.
"To not have anyone come at me with sharp objects?"
"OK. What else?"
"A surprise visitor?"
"Like who?"
"You." (You don't get to the twenty-fifth year of marriage without knowing the answer to that question.)
And in she walks, talking to me on the phone! Surprise!
Well, not entirely. She had guaranteed that the dirty running clothes she was taking away on Monday would be back by Wednesday, and we already knew from a previous shipment that UPS was not up to fulfilling that guarantee, so I knew someone was coming. And since I know her reasonably well, I figured Jan was a likely candidate, but I wasn't certain. Lucky me, I got my wish.
Jan came loaded with gifts from family and friends.
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| A crown for King Joseph (in his palatial new digs), and a regifted balloon. |
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| A propellor beanie to wear while doing web site work. |
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| A way to have a bad hair day, even if I have no hair. |
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| A pirate do-rag. I need to work on my pirate face. |
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| A hand-knitted cap. So soft. I think it might be alpaca! |
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One of many Christie Clinic Illinois Marathon caps. |
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| A running cap for when it's sunny. |
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| A running cap for when it's cold. |
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| A Patriots cap. From Packers fans. |
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| Running pants, candy, and a card. |
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| A great book and a Non Sequitor joke calendar, courtesy of volunteer extraordinaire Adrian. |
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| A Kindle, plus Kindle gift card. Perfect for treadmill time! |
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| Three of my very favorite women: Char (aka Mom), Jan, Marrow Mara |
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And cakes! One brought by mom and Mara, one brought by Food Service.
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| Hmmm. White cake from Food Service, or cheesecake from The Cheesecake Factory? |
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| The two sweetest treats of the day. |
Not pictured: Many cards and gift cards. Amazing homemade whole grain fig bars. A DVD of birthday greetings from HK colleagues. An oil change and tank of gas and new back wiper blade from Pro-Tech Motors.
All in all, a really, really great birthday. Thank you to all.
Note: When I have guests, I sit in the bed so they can use the chairs. And I always wear the hospital gown, because I can get a clean one whenever I want. But the combination makes me look more sickly than I feel.
Whipsaw Days (Part 4)
[You should read Part 1, Part 2, and Part 3 first.]
[Sometime in the very early morning, Thursday, February 17.]
Still no word on what I can eat. Haven't eaten since 5 p.m. yesterday. Finally someone tells me all I have to is call Food Service, and they'll tell me what I can eat. The doctors communicate with the Food Service, not with the nurses or patients. I'm on a soft food diet -- applesauce, yogurt, gelatin, ice cream (mistake! the surgery site is very sensitive to heat and cold!).
[Sometime in the very early morning, Thursday, February 17.]
I remember nothing of the operation. (Thanks, Anesthesiologist!) The first thing I remember, I’m being wheeled to OR recovery. I've had anesthesia before, and I know that, much to Jan's amusement, I keep asking the same questions over and over. I try to show my medical sophistication by asking, “Have I been asking a lot of questions over and over?” “Yes,” replies the nearest person. "Including that one. By the way, your limit is six.” I don't know what they do when you reach the limit.
While I’m in this forgetful state, they’re telling me (I later confirm) that they were able to get all the fungus without getting as far as the teeth. They need to check what they took to make sure there are clean margins -- the outer edges of the excision show no trace of fungus, indicating that it is entirely contained in the removed tissue -- but they are pretty sure they have succeeded. I have a small depression in the roof of my left palate, right by the teeth. If my palate were a fairway, it would be a sandtrap up against the stone wall lining that side of the green.
It’s the very early hours of Thursday morning. I’m going to be back in my bed by 3 a.m. Incredibly thirsty. Plastic oxygen mask on, which is hot and wet and uncomfortable. Mask comes off. I get to dab my tongue with wet sponge swabs, but not too many. I also get to figure how to pee into a handheld urinal while sitting up on the gurney with my legs sticking forward, still not fully coherent. Amazed I don’t make a mess.
Back up to room. Some pain meds, some Ambien, hoping to sleep a little later than usual.
6:30, maybe 7:00, the Junior Posse comes in, somewhat flustered. They had been taken by surprise by the emergency surgery. (I know how they feel!) How was I feeling? Could they look? My mouth is a tourist attraction.
A little later ... Word from someone (ENT?) confirming that everything looks great – didn’t see anything left behind during the operation, didn’t see any fungus on the margin of the tissue removed. Relief.
Need some rest. Can’t eat, because I don’t know what I am allowed to eat with the recent remodeling of my mouth. Someone will find out.
Relief. Resting. Reporting to family. I feel like I have made it through every test.
In an hour or so, in comes the Senior Posse, with a bad vibe. “How do you feel?” “Apprehensive?” “That’s appropriate, in these circumstances.” The ENTs want to go back in on Friday. They are 99.9% sure they got it all, there is no evidence that they didn't get it all, but that remaining .1% that could quickly explode is going to keep gnawing at them. Until when, I wonder? Until the surgeons have gnawed off any teeth or bit of jawbone that could be harboring these terroristic molds and fungi? 100% solutions are generally bad ideas.
So, a return, non-emergency surgery is planned for Friday. Emotional low point of this Grand Life Detour, so far. The last surgery was scary, and the fact that they feel they need to go back is scary. I think I should talk to some supportive people, which will inevitably will make me cry, but I’m also exhausted. Napping wins over crying.
A little later the ENT anaesthetist is in to talk about how it went last time, so they can adjust for tomorrow. She can’t tell me what they’re actually planning to do this time, and I emphasize that I want that information ahead of time. She’ll see what she can do.
Followed immediately by ID Guy, talking about various scary fungi for a while before I realize he’s delivering good news. I definitely don’t have the Monster Fungus Mucormycosis, which terrifies the medical establishment and would justify a return visit to the OR. I probably have a more common and more easily managed aspergillus, or something like it, my medications have been changed to address this finding, and he’s surprised that there is a followup surgery planned. I emphasize the importance of ID and ENT communicating with each other and with my main team, so we make sure the left hand is not exorcising a demon the right hand has proved does not exist. They will be talking, and I should hear from some doctors before the end of the day.
Some time during the afternoon, during one of the doctor visits, my transport angel from last night pokes his head in to see how I'm doing, as he promised he would.
Some time during the afternoon, during one of the doctor visits, my transport angel from last night pokes his head in to see how I'm doing, as he promised he would.
After 5, which in my mind is the the end of the day, still no word. In hospital time, the end of the day may be closer to 11:59. I ask the nurse if she has heard anything, or if she sees anything on my schedule. No. Maybe it’s not happening!
5:30, call the leukemia nurse from the clinic to ask for some communication, leave voicemail.
6:30, head leukemia nurse in the hospital checks in. I don’t think she’s an emissary, just seeing how I’m doing, but she does have information. Everybody’s been talking. (Good!) We’re not on a quest to find more hidden mucormycosis, because we know it's not that. ENT just likes to revisit their work, to make extra sure they were as excellent as they thought they were originally. It sounds like there’s a low probability of more actual cutting, and there’s definitely less risk from the anesthesia this time because we can plan for me to have an empty stomach. The nurse doesn't know if a decision has been made.
Dinner is something off the soft food menu -- don't remember.
Around 10 (maybe earlier -- still tired), go to bed. Still no surgery showing up on my chart. Hopeful relief. Fall asleep.
Midnight, vitals check, and word that I DO have surgery scheduled for tomorrow, but the time is not known. No drinking allowed starting now. I could get a 6:30 knock on the door, or it could be at 10:00. (More likely the latter, since this is a scheduled surgery.) "I'm going to need an Ambien."
The Ambien is not effective. I take advantage of being awake to take notes on the past crazy couple of days. I get a lot down. Eventually, I feel tired enough to sleep.
Friday, 4 a.m., vitals check, surgery is scheduled for 10:00 am. Not sleeping very well.
6:30 a.m., knock on the door. In comes the ENT team. They take a look at their handiwork inside my mouth, pronounce themselves satisfied, and say, "You don't need any more surgery."
After they leave the room, lying in my bed, I raise my hands over my head in the universal sign of celebration.
I Will
Beat You.
P.S. This is the last installment of Whipsaw Days. It's a been a quiet ride since the pardon from followup surgery.
Beat You.
P.S. This is the last installment of Whipsaw Days. It's a been a quiet ride since the pardon from followup surgery.
Tuesday, February 22, 2011
Whipsaw Days (Part 3)
First, a riddle that arrived on a postcard from my brother who is spending the year in Prague with his family. (Lots of wonderful writing and photos at the blog, written by my sister-in-law Kate.) The riddle itself is from my eight-year-old nephew Ben.
Q: Why can't you hear a pterodactyl go to the bathroom? (Answer at the bottom of the post.)
= = =
[You should read Part 1 and Part 2 first.]
[Wednesday night, February 16]
There is a knock on the door. It's one of the ENT doctors. I need to have surgery. Tomorrow? No, right now. That explains the gurney outside my door.
The biopsy they took from my mouth in the afternoon did indicate that there was a fungus involved. Too soon to know what kind of fungus, but there is one in particular that they can take no chances with, the one that keeps the ENT doctors up at night until they rule it out or eradicate it. She describes it as "very aggressive." I later learn that this means "can kill you in a day," but "very aggressive" provides plenty of dark room for the imagination.
The doctor offers to speak with my wife. I think it's better if Jan hears it from me, so I put off the call while I learn more. The plan is to cut away the inflamed tissue on my upper palate to see how much fungus is hiding underneath it. They can't say how much tissue they will need to remove or how long the procedure will take. If the fungus appears to be contained within the inflamed tissue, then they're done once that tissue is excised. If it has spread deeper into the palate, they will remove more. If it has spread to the teeth, they will remove teeth. If to the jaw, remove part of the jaw. (There would be reconstructive surgery later to replace whatever gets removed.)
Since they don't know how much they're going to do until they start doing it, they can't say how long it will take. I might be back up in my room by 3 a.m., I might be recovering in the intensive care unit at 8 a.m., I might still be in the operating room at 8 a.m. It all depends on what they find when they make their first cuts and how far they have to go to feel that they have gotten it all.
Time to call Jan to let her know that I may not be in a position to give her the daily morning "I'm awake" text/call, and why. She is on my phone's speaker as I review the plan, with the doctor present. As I start getting to the removal of teeth, Jan indicates she's heard enough detail. Jan gets a phone number for being able to contact the ENT team, and they get her number in case they need to contact her.
I say goodnight to Jan, but a far different goodnight than she deserves on her birthday. (Sorry, Jan.) I know she's not going to sleep tonight.
Q: Why can't you hear a pterodactyl go to the bathroom? (Answer at the bottom of the post.)
= = =
[You should read Part 1 and Part 2 first.]
[Wednesday night, February 16]
There is a knock on the door. It's one of the ENT doctors. I need to have surgery. Tomorrow? No, right now. That explains the gurney outside my door.
The biopsy they took from my mouth in the afternoon did indicate that there was a fungus involved. Too soon to know what kind of fungus, but there is one in particular that they can take no chances with, the one that keeps the ENT doctors up at night until they rule it out or eradicate it. She describes it as "very aggressive." I later learn that this means "can kill you in a day," but "very aggressive" provides plenty of dark room for the imagination.
The doctor offers to speak with my wife. I think it's better if Jan hears it from me, so I put off the call while I learn more. The plan is to cut away the inflamed tissue on my upper palate to see how much fungus is hiding underneath it. They can't say how much tissue they will need to remove or how long the procedure will take. If the fungus appears to be contained within the inflamed tissue, then they're done once that tissue is excised. If it has spread deeper into the palate, they will remove more. If it has spread to the teeth, they will remove teeth. If to the jaw, remove part of the jaw. (There would be reconstructive surgery later to replace whatever gets removed.)
Since they don't know how much they're going to do until they start doing it, they can't say how long it will take. I might be back up in my room by 3 a.m., I might be recovering in the intensive care unit at 8 a.m., I might still be in the operating room at 8 a.m. It all depends on what they find when they make their first cuts and how far they have to go to feel that they have gotten it all.
Time to call Jan to let her know that I may not be in a position to give her the daily morning "I'm awake" text/call, and why. She is on my phone's speaker as I review the plan, with the doctor present. As I start getting to the removal of teeth, Jan indicates she's heard enough detail. Jan gets a phone number for being able to contact the ENT team, and they get her number in case they need to contact her.
I say goodnight to Jan, but a far different goodnight than she deserves on her birthday. (Sorry, Jan.) I know she's not going to sleep tonight.
I'm sitting on the edge of my bed, putting on my slippers, head bowed, shoulders rhythmically convulsing.
"I know," says doctor sympathetically, "it’s a lot to take in all at once."
But I’m not crying. I’m laughing (ruefully) at the absurd perfection of this ending to the day, with all its ups and downs. Of course we needed one more twist to make the day complete.
Transport has been waiting outside the room, patiently. He greets me by name with a Mexican accent and a smile. I prepare my room for this unexpected absence: put away attractive small items, lock up laptop. Once I’m on the gurney, he positions himself so he can talk with me, which he does. Talks about how much he loves his job, loves learning about the patients he moves, likes to check in on them after their procedures. He was happy that he was stuck at the hospital for 5 days during the blizzard, that’s how much he loves his job. He is from Acapulco. I tell him I have visited Acapulco, "y yo vivÃa en México cuando yo tenÃa quince años." "Ah, we must talk of Mexico and Acapulco. Good luck, Mr. Seeley, and I will see you again." That is how Transport is supposed to work. For the duration of the trip, I feel less stress than I felt just before and much less than I am about to feel. He is a healer.
"Welcome to the OR Recovery Room."
"Oh, finished already? You guys are very good."
No, the recovery room is also where we prepare for the surgery.
There are some introductions, who’s going to do what. A few minutes in they realize I’m under an isolation order, which means they all should have on an extra layer of stuff -- gloves, masks, smocks -- before I came in and potentially contaminated them. “Wasn’t that information in the order?” “There was no order.” “How can there not be an order?” It’s kind of too late, since I’ve already been wheeled in and some have already interacted with me, but they scramble to put on the gear. Not building confidence.
It feels like a hospital TV show cast – loose banter among staff. More serious than Scrubs, less intellectual than House.
“Is this your first surgery?”
“Yes.”
(Someone yards away) “Vir-gin!”
I have received a bunch of platelets and blood already today, and I’m going to get more. My platelet counts have hovered around 10, and you want at least 50 to feel comfortable cutting someone open. I’m close, but more is coming.
A doctor tells me the side effects of a medication I’ll be receiving: shakes, chills, sweats, kidney malfunction. Also, a risk of anesthesia so close to eating – unavoidable, since this is an emergency – is vomiting into your lungs and then contracting a deadly pneumonia. But they have a way to minimize the risk by pressing on the voice box as I'm going under, so I shouldn't be alarmed if I feel that happening. It sounds very uncomfortable, as I'm picturing that they are manually collapsing my voice box, but they demonstrate and I realize it's not something I need to worry about.
For the first time since my diagnosis, I have a Mortality Moment. They're going to be slicing open my head, from the inside of my mouth. The surgery could go wrong, and I could die. I could vomit into my lungs, and I could die. The surgery could fail to get all the fungus, and I could die. I might not leave the hospital alive. The OR might be the last thing I remember in my life.
But probably not, and the moment passes.
I sign a bunch of waivers. There's a lot of fancy words about risks and side effects, but it all boils down to, "Do you want to live?" "Yes."
Off we go to the OR. I am torn between wanting to see my surroundings, for documentation, and wanting to close my eyes and go to my happy place. Oh no! I haven’t picked a happy place! I’m flipping through mental brochures at the Happy Place Travel Agency. In a hammock on a tropical beach. Floating in a magical cenote in the Yucatan peninsula. Basking on the rocks at the top of a New England mountain. Hurry! Pick one! The building is on fire and is about to collapse!
Not working!
I try a smiling Jan gazingly lovingly down at me. It's corny, but there are pink and red valentines scattered behind her. It's powerful stuff, and it is briefly calming. I think, not only is she helping me now, but I'll be able to tell her afterward how gazing up at her sustained me through the surgery. "You're having surgery?! What are they doing to you?! Oh, God, please don't die!"
NOT WORKING!
I have no idea where it comes from, but now I see what I would see if I were riding a bumblebee circling a foot or two over Moroccan mosaics. Rhythmic, sinuous, infinite -- not bad for a last-minute happy place entry.
But I’m still feeling those side effects they mentioned: shakes, chills, sweats, teeth chattering.
"So, that medication with the side effects you were telling me about? Have we started it?"
"No, that medication starts after the procedure."
"Oh, so these symptoms are just from fear. Thanks."
"Don’t worry, we have something for that."
The last thing I remember hearing is, “At least one of those teeth is coming out.”
Fade to black.
= = =
Q: Why can't you hear a pterodactyl go to the bathroom?
Monday, February 21, 2011
Whipsaw Days (Part 2)
[You should read Part 1 first.]
[Wednesday afternoon, February 16]
In the early afternoon, a doctor from ENT (eye ear nose throat) comes by to look at the gum sore. She takes a full history -- from a feeling five days before that I had burned the roof of my mouth on hot cocoa (completely plausible) through the current "hot spot" on the tongue side of the upper left set of teeth, about halfway back. She looks at it, says it's probably fine, but she will return with a more senior doctor to check it out.
Relief. It's probably fine.
A doctor from ID (infectious diseases) comes by to confirm that my pneumonia is almost certainly fungal. There is no way to be absolutely sure without surgically taking a sample of the lung tissue, and there is no way to do that safely in my condition, so we're going to go with how it looks on the CT scan. Fungal pneumonia is generally less worrisome than bacterial, and does not inherently pose an obstacle to a transplant. It does take a long time to clear up.
More relief. I don't have a pneumonia that's going to run wild.
The first ENT doctor returns with her more senior colleague. He approaches with a swab and asks me to open my mouth.
"I'm just going to take a look..."
"OW!!!"
"... and poke at it."
All that expensive and extensive schooling, yet the doctor has trouble with the basic temporal sequencing concept of Before. Before you do something to a patient, tell him what and why. If it's going to hurt, tell him how much and how long. BEFORE. Perhaps some remedial training from Bert and Ernie would be helpful.
Now he's casting about the room for "any sharp object I can use to take a piece." Happily (?), the other doctor has some sterile scissors in her pocket. He approaches with the scissors, but I'm ready this time.
"Stop. What are you going to do?"
"I'm going to take a small piece of tissue from the infected site so that we can analyze it more closely."
"How much is it going to hurt?"
"About as much as when I poked it."
I can handle that -- after all, I just did. And, perhaps because I know what's coming, it hurts less.
His preliminary conclusion: it's probably nothing, maybe some gingivitis from overly aggressive tooth brushing. But there is a dangerous fungus that spreads very rapidly that he needs to rule out. He says he is "99.9% certain" it is not that, but he will not sleep unless he has ruled it out completely through a culture.
I have a relaxed though not very good dinner. I have pneumonia, but it's not a bad one. I have a gum sore, but it's probably no big deal. I play some online Scrabble, answer some e-mail, go for a walk, have a shower, get ready for bed.
There is a knock on the door.
Read Part 3.
[Wednesday afternoon, February 16]
In the early afternoon, a doctor from ENT (eye ear nose throat) comes by to look at the gum sore. She takes a full history -- from a feeling five days before that I had burned the roof of my mouth on hot cocoa (completely plausible) through the current "hot spot" on the tongue side of the upper left set of teeth, about halfway back. She looks at it, says it's probably fine, but she will return with a more senior doctor to check it out.
Relief. It's probably fine.
A doctor from ID (infectious diseases) comes by to confirm that my pneumonia is almost certainly fungal. There is no way to be absolutely sure without surgically taking a sample of the lung tissue, and there is no way to do that safely in my condition, so we're going to go with how it looks on the CT scan. Fungal pneumonia is generally less worrisome than bacterial, and does not inherently pose an obstacle to a transplant. It does take a long time to clear up.
More relief. I don't have a pneumonia that's going to run wild.
The first ENT doctor returns with her more senior colleague. He approaches with a swab and asks me to open my mouth.
"I'm just going to take a look..."
"OW!!!"
"... and poke at it."
All that expensive and extensive schooling, yet the doctor has trouble with the basic temporal sequencing concept of Before. Before you do something to a patient, tell him what and why. If it's going to hurt, tell him how much and how long. BEFORE. Perhaps some remedial training from Bert and Ernie would be helpful.
Now he's casting about the room for "any sharp object I can use to take a piece." Happily (?), the other doctor has some sterile scissors in her pocket. He approaches with the scissors, but I'm ready this time.
"Stop. What are you going to do?"
"I'm going to take a small piece of tissue from the infected site so that we can analyze it more closely."
"How much is it going to hurt?"
"About as much as when I poked it."
I can handle that -- after all, I just did. And, perhaps because I know what's coming, it hurts less.
His preliminary conclusion: it's probably nothing, maybe some gingivitis from overly aggressive tooth brushing. But there is a dangerous fungus that spreads very rapidly that he needs to rule out. He says he is "99.9% certain" it is not that, but he will not sleep unless he has ruled it out completely through a culture.
I have a relaxed though not very good dinner. I have pneumonia, but it's not a bad one. I have a gum sore, but it's probably no big deal. I play some online Scrabble, answer some e-mail, go for a walk, have a shower, get ready for bed.
There is a knock on the door.
Read Part 3.
D-Day (sort of)
Today is Donation Day for Mara. She just sent me an e-mail from the clinic next door saying it is going well and she is feeling good. Based on the pace of collection, she'll go back in tomorrow to finish providing the number of cells we want.
My own D-Day -- when Mara's forces storm onto the hopefully deserted beaches inside my marrow -- is undecided.
There are tradeoffs between proceeding immediately with the transplant and waiting. I am still recovering from several infections, and you want to go into transplant with as few infections as possible. My neutrophils are finally showing some signs of recovery, which increases my ability to take care of the infections I do have. The last four days of absolute neutrophil count have been 40, 40, 60, 100. They were showing glimmers more than a week ago, but then the infections shifted my body's energies. So, the longer we wait, the more vanquished my current infections will be. On the other hand, the longer we wait, the more opportunity there is for another infection to take advantage of my weakened immune system.
To try to move things along, I am going to start my own course of Neupogen -- the drug Mara took to boost stem cell production -- tonight. If I'm lucky, I'll experience the bone pain that means I have so many stem cells in my marrow that they are bursting.
Update: Mara stopped by. She's feeling tired, but otherwise OK after six hours tethered to the harvesting contraption. She is glad she didn't have to earn her Bedpan Badge.
 |
| Out one arm, through the machine, in the other arm. |
 |
| Mara: Stem cell donor, bag lady. |
My own D-Day -- when Mara's forces storm onto the hopefully deserted beaches inside my marrow -- is undecided.
There are tradeoffs between proceeding immediately with the transplant and waiting. I am still recovering from several infections, and you want to go into transplant with as few infections as possible. My neutrophils are finally showing some signs of recovery, which increases my ability to take care of the infections I do have. The last four days of absolute neutrophil count have been 40, 40, 60, 100. They were showing glimmers more than a week ago, but then the infections shifted my body's energies. So, the longer we wait, the more vanquished my current infections will be. On the other hand, the longer we wait, the more opportunity there is for another infection to take advantage of my weakened immune system.
To try to move things along, I am going to start my own course of Neupogen -- the drug Mara took to boost stem cell production -- tonight. If I'm lucky, I'll experience the bone pain that means I have so many stem cells in my marrow that they are bursting.
Update: Mara stopped by. She's feeling tired, but otherwise OK after six hours tethered to the harvesting contraption. She is glad she didn't have to earn her Bedpan Badge.
Sunday, February 20, 2011
Moving Day
[Sunday]
Now that I am not considered a threat to the rest of the patients on the leukemia wing, they want to move me back. In fact, last night, at around 9:45 they wanted to move me some time that night. I persuaded them that me sleeping was more important than me getting into a new room on Saturday night rather than Sunday morning.
Sunday brought a lot of visitors -- cousins Mindy, Paula, and Jana, my mom, Mara, Jan, and Paul. Not all at once, but there was some overlap. I am now in position to provide my own whole grains and fibers.
A little before noon, my nurse came to tell me I would be moving soon. I had been talking with anyone who would listen about my strong desire to get one of the bigger rooms on the floor. I had been in a regular room and in a small one, and the small was pretty cramped, especially with a visitor. This floor only has large and small, and I wanted to hold out for a large one, given the time I had already served in the small one, plus the length of my stay so far and yet to come. The nurse tells me I am getting one of the large rooms.
With the help of family, I pack up all my stuff and we waited. Around 3:00, someone came by with a wheelchair (to carry stuff, not me). We parade off of South and down the hall to North. Going down the hall. Rolling and parading into my new SMALL room! I stamp my feet, hold my breath, explain how special I am, and get the person in charge to agree (with only a little eye-rolling) to put me in one of the larger rooms. Fortunately, one is coming available within the hour. My nurse who had told me I was getting a larger room stopped by, and she was not happy to hear about the attempted room switcheroo. "I am going to speak with someone about that."
Since my now ex-new room is too small to host the number of visitors I had, we hang out in the lounge with the exercise equipment. We keep getting updates on the room -- it's empty, we've ordered a cleaning STAT, we're still waiting for the cleaners, the cleaners are in there, it's almost ready.
Around 5:30, I get to move in. The room feels twice as large as the one they were prepared to move me into. It's fantastic.
Now that I am not considered a threat to the rest of the patients on the leukemia wing, they want to move me back. In fact, last night, at around 9:45 they wanted to move me some time that night. I persuaded them that me sleeping was more important than me getting into a new room on Saturday night rather than Sunday morning.
Sunday brought a lot of visitors -- cousins Mindy, Paula, and Jana, my mom, Mara, Jan, and Paul. Not all at once, but there was some overlap. I am now in position to provide my own whole grains and fibers.
A little before noon, my nurse came to tell me I would be moving soon. I had been talking with anyone who would listen about my strong desire to get one of the bigger rooms on the floor. I had been in a regular room and in a small one, and the small was pretty cramped, especially with a visitor. This floor only has large and small, and I wanted to hold out for a large one, given the time I had already served in the small one, plus the length of my stay so far and yet to come. The nurse tells me I am getting one of the large rooms.
With the help of family, I pack up all my stuff and we waited. Around 3:00, someone came by with a wheelchair (to carry stuff, not me). We parade off of South and down the hall to North. Going down the hall. Rolling and parading into my new SMALL room! I stamp my feet, hold my breath, explain how special I am, and get the person in charge to agree (with only a little eye-rolling) to put me in one of the larger rooms. Fortunately, one is coming available within the hour. My nurse who had told me I was getting a larger room stopped by, and she was not happy to hear about the attempted room switcheroo. "I am going to speak with someone about that."
Since my now ex-new room is too small to host the number of visitors I had, we hang out in the lounge with the exercise equipment. We keep getting updates on the room -- it's empty, we've ordered a cleaning STAT, we're still waiting for the cleaners, the cleaners are in there, it's almost ready.
Around 5:30, I get to move in. The room feels twice as large as the one they were prepared to move me into. It's fantastic.
Whipsaw Days (Part 1)
[Wednesday morning]
Tuesday ended with a diagnosis of pneumonia. Wednesday morning, I get to see pictures. (There's an app for that!) The good news was that its shape suggested that it was a fungal pneumonia, which are generally not as aggressive as bacterial. I mention the sore spot on my gum, which they look at. "We'll keep an eye on that."
Mom comes! She's in town to see her brother Fred, in his final days, but also to see me.
The Posse comes in. No news. "Any pain." "Well, I have this sore spot on my gum." Mouth sores are common with chemotherapy, so they look but are not concerned.
Lunch, including lentil soup my mom brings up from the Au Bon Pain downstairs. I am about 10 bites into the soup when there is a knock on the door.
In comes a nurse from ENT (eye nose throat), wheeling a tall cart with tubes, drawers and a monitor. Imagine a movie in which the hero has been captured and is being held in a room. The door opens, and in comes a new character wheeling a cart. You don't even have to see the contents of the cart to know what's coming -- torture. It's kind of like that in the hospital room. When an unfamiliar face comes to your room with a large toolbox, there will be procedures.
The nurse explains that the CT scans showed lots of crud in my sinuses. Could be no big deal, could be a big problem; residue from chronic sinusitis, or a sign of an active infection. For the first day in many, my nasal passages are completely clear.
I abandon my lunch, get onto my bed, and submit to a very close detailed scoping tour of my nasal passages. First, the nurse sprays a couple of numbing agents up each nostril. Then, she sticks a flexible scope up one nostril and in much farther than I thought one could go. There are multiple cavities to explore, on each side. I could watch on the monitor, but I go with the ever-popular if-can't-see-it-maybe-it's-not-really-happening strategy. The nurse is looking for dark crusty stuff in particular, which if found could be very serious.
My mom, however, has a front-row seat and, with less personal involvement, is able to watch. She says the insides of my nasal cavities look amazingly clean and empty. (Thanks, Mom!) Fortunately, the nurse confirms that this is not just the biased opinion of a loving mother -- no dark crusty stuff, barely enough mucus to take a sample. All clear on the sinus front.
Back to lunch and just some more hanging out with my mom, relieved that the pneumonia didn't look serious and that my sinuses did not appear to be harboring any killer organisms.
Read Part 2
Tuesday ended with a diagnosis of pneumonia. Wednesday morning, I get to see pictures. (There's an app for that!) The good news was that its shape suggested that it was a fungal pneumonia, which are generally not as aggressive as bacterial. I mention the sore spot on my gum, which they look at. "We'll keep an eye on that."
Mom comes! She's in town to see her brother Fred, in his final days, but also to see me.
The Posse comes in. No news. "Any pain." "Well, I have this sore spot on my gum." Mouth sores are common with chemotherapy, so they look but are not concerned.
Lunch, including lentil soup my mom brings up from the Au Bon Pain downstairs. I am about 10 bites into the soup when there is a knock on the door.
In comes a nurse from ENT (eye nose throat), wheeling a tall cart with tubes, drawers and a monitor. Imagine a movie in which the hero has been captured and is being held in a room. The door opens, and in comes a new character wheeling a cart. You don't even have to see the contents of the cart to know what's coming -- torture. It's kind of like that in the hospital room. When an unfamiliar face comes to your room with a large toolbox, there will be procedures.
The nurse explains that the CT scans showed lots of crud in my sinuses. Could be no big deal, could be a big problem; residue from chronic sinusitis, or a sign of an active infection. For the first day in many, my nasal passages are completely clear.
I abandon my lunch, get onto my bed, and submit to a very close detailed scoping tour of my nasal passages. First, the nurse sprays a couple of numbing agents up each nostril. Then, she sticks a flexible scope up one nostril and in much farther than I thought one could go. There are multiple cavities to explore, on each side. I could watch on the monitor, but I go with the ever-popular if-can't-see-it-maybe-it's-not-really-happening strategy. The nurse is looking for dark crusty stuff in particular, which if found could be very serious.
My mom, however, has a front-row seat and, with less personal involvement, is able to watch. She says the insides of my nasal cavities look amazingly clean and empty. (Thanks, Mom!) Fortunately, the nurse confirms that this is not just the biased opinion of a loving mother -- no dark crusty stuff, barely enough mucus to take a sample. All clear on the sinus front.
Back to lunch and just some more hanging out with my mom, relieved that the pneumonia didn't look serious and that my sinuses did not appear to be harboring any killer organisms.
Read Part 2
Saturday, February 19, 2011
No News IS Good News
When I don't make a blog post for the day, that has typically meant things were not going well. In those cases, no news had meant bad news.
Today, there is no significant news to report, which is good news. I enjoy uneventful days.
Having been freed yesterday afternoon from the contact restrictions that confined me to the corridor and, when out of the room, to a mask, smock over my gown, and gloves, I am back to running (walking) the larger sixth-floor maze. Last night, I covered roughly 2 miles (based on time).
Tonight, I used what I knew of my walking pace to determine a half-mile course through the non-patient part of the sixth floor. My first attempt was about 30 seconds short, so I added a leg down a dead-end corridor. The second pass came out just about right. Then I jogged the third lap and walked the fourth.
Today, there is no significant news to report, which is good news. I enjoy uneventful days.
Having been freed yesterday afternoon from the contact restrictions that confined me to the corridor and, when out of the room, to a mask, smock over my gown, and gloves, I am back to running (walking) the larger sixth-floor maze. Last night, I covered roughly 2 miles (based on time).
Tonight, I used what I knew of my walking pace to determine a half-mile course through the non-patient part of the sixth floor. My first attempt was about 30 seconds short, so I added a leg down a dead-end corridor. The second pass came out just about right. Then I jogged the third lap and walked the fourth.
But, Wait. There's More!
Host: Well, Joe, let's review what you have won so far: a stay (of indeterminate length) at the Bernard Mitchell Resort, hot and sweaty nights (but not the good kind), interrupted sleep, chemotherapy, mouth sores, rashes, hair loss, weight loss, gagging, 4 a.m. bloodlettings, guided tours (of indeterminate length) of the medical center, and unlimited meals from a very limited menu.
But now you have also won...
....a New MONIA!!
[Audience applauds madly.]
Joe (to himself): This is the worst game show concept ever.
= = =
Tuesday afternoon...
I had sinus and chest CT scans mid-afternoon, trying to identify an explanation for my persistent fever. Later in the afternoon, one of my doctors comes in, without her usual smile. "I'm sorry. You have pneumonia."
Pneumonia is a terrifying prospect for a patient with a compromised immune system. It can get out of control quickly, and it can kill you. Every day, multiple times a day, doctors and nurses check my breathing with their stethoscopes. It's always clear. Patients are encouraged to breathe deeply and to cough, both ways of making your lungs a less hospitable place for pneumonia.
I was surprised. I have had pneumonia, and it knocked me out. Trouble breathing, incredible muscle aches. I had none of those symptoms. I think, because my immune system is currently ineffective, I can't mount the inflammatory response that produces the typical symptoms.
The plan is to adjust medications and monitor. The good news is I'm already receiving the kinds of medications I would be put on, so in effect we have already been treating it. If it's viral, we just have to wait it out.
I'm finally feeling well enough to walk. After dinner, I put on my smock, gloves, and mask. I'm a little unsteady standing up, and I feel weak.
When I begin the walk, I am moving slowly. I am lightheaded. I feel like a sick person. And a scared person. And I'm angry at this stream of illnesses and conditions. Walking is my way to fight back. As I'm strolling, then walking, then striding up and down the hall, I have this refrain going through my mind, one word per step:
I will
beat you
I will
beat you
I will
beat you
I will
beat you
I will
beat you
...
The longer I walk, the stronger I feel. By the end of the walk, I feel practically normal. I have had runs that left me feeling good, but I have never had one that took me from feeling sick to feeling healthy.
Friday, February 18, 2011
If the Cancer Doesn't Kill You...
It's taken me over a month to realize it -- I've had a few distractions -- but it is challenging to order a single day's worth of nutritious meals off of the menu, let alone enough meals to get a patient through an extended stay like my own. By nutritious, I mean meals that follow current dietary guidelines.
I can't find the menu right now, but I believe the only whole grain sources on the menu are Cheerios, Bran Flakes, oatmeal, apple bran muffin, and whole wheat bread. Some of these are only nominal whole grain sources.
The only significant non-animal protein sources are (highly sweetened) soymilk, (white) rice and beans, a soy-based fake chicken patty, and meatless chili. (For the chili and the beans, you would need to also order corn.) If you eat eggs and dairy, there are milk, cheese, cottage cheese, yogurt, and eggs.
I eat everything, so I don't have ethical or moral problems with my food choices here. However, I believe the menu fails to support current nutritional advice. Apparently, the menu is far better than it was a few years ago, which is disturbing to contemplate. My guess is that they increased the number of lean meat choices, most of which are decent or better -- grilled chicken, baked fish, roast pork, roast turkey. The meatloaf is unreliable -- the first time I tried it, moist and tasty. The last time, and it will be the last time -- grey and gristly.
Personally, I have been constipated most of my time here, despite eating fruit and/or vegetables at every meal, and despite a steady dose of stool softeners. I'm sure it's the lack of fiber, at least relative to what I typically eat. Perhaps it was coincidental, but my first normal bowel movement in a long time came the day after my mom brought me some lentil soup from outside. It is crazy to constipate patients with your menu and then prescribe stool softeners (or laxatives) to fix the problem you created.
I spoke with an unsympathetic dietitian yesterday about the situation. First, she pointed out that Nutrition and Food Service are completely separate departments and have no interaction. (Brilliant!) She argued that most patients need as much protein as possible, so that's why there are so many meat choices and so few non-meat choices. Also, they get very few complaints about the food, and they have to serve what people like. It's also true that most patients are not in the hospital as long as I have been and will be, so they aren't going to be as bothered by limited choices. And lots of people in this country are obviously happy with salty low-quality meat- and starch-heavy meals, or Bob Evans and Denny's would go out of business. But I would still expect a hospital to at least make it possible to order meals that comply with current nutritional recommendations and maybe even use hospitalization as an opportunity to help people consider some healthier food choices for the long term.
I hear I'm getting a visit from the Food Service side today. I will try to be tactful.
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