D+18 — "Home" Sweet Home

The apartment with the sickeningly "fresh" air is going to work out after all, and Jan and I spent our first night in it. I will be here for an unknown number of weeks.

Jan talked to one of the owners of the apartment complex, and he was very sympathetic. The caretaker and other staff put in extra time airing out the apartment and washing the wooden floors (again) while Jan was at the hospital. By the time we got here Friday evening, the air was still slightly perfumed but easily tolerable.

The apartment is very nice. There is a main living/kitchen/dining area, of off which are a bathroom with shower, a bedroom, and a master bedroom that has a Jacuzzi in its bathroom.

I slept better than usual, though I still woke up four times to pee. That's several times less than a typical night in the hospital, and each time brought the small thrill of not having to pee into a small plastic urinal so that the nurses could track my output and the larger thrill of waking up and not being in the hospital.

Today (Saturday), I get a visit from a home health care nurse who hooks me up to my own IV pole for four hours of saline fluid. She also collects two-plus hours of information about medications, medical history, current state... A lot of the questions, especially ones like when did I start taking a specific medication, seem like they would be better answered by the hospital. I don't remember very clearly when a specific medication started, especially since several medication changes happened during my dilaudid daze.

In the morning, Jan and I took a walk on the balcony that runs outside the door along the length of the third floor. Coincidentally, the balcony is about the same length as the corridor I have been walking since mid-October.

During the day, we have been trying different foods that appeal to me. The best find so far has been whole milk, which meets my need to consume fat with one of my medications.

All in all, the last day of 2011 was pretty good, compared to most of the first and last three months. Here's to a better 2012.

D+16 — What Was The Plan, Again?

(Midday, Thursday)

The only things that seem certain right now are (1) that I am having two procedures today, one to put in a PICC line (a line going in just above my elbow) and one to remove my current jugular line, and (2) that the doctors are aiming to discharge me today.

I have heard "getting discharged" and "going home" used interchangeably, and given my experience the first time around, we were operating under the assumption that, in our case, they both meant returning to Champaign. Yesterday, my doctor made it clear that his definition was, leaving the hospital but staying fairly close. Since we live two-and-a-half hours away, "going home" excludes Champaign in my attending doctor's definition.

For round one, in the winter, my main doctor (not my current attending) was willing to make an exception because I was very stable and, despite all I went through, I had come through fairly strong.

Anyway, we were completely unprepared for this development, so we have been scrambling to find an acceptable place nearby. There are not many options.

On the other hand, we are more comfortable with staying near the hospital for a week or so than with going back to Champaign. I'm not as strong as I was upon discharge in the winter, and sticking close offers some comfort.

We have a reservation at a Hampton Inn 24 miles from the hospital (mostly highway).

We have a lead on a furnished apartment available for short-term least only a couple of miles from the hospital. Not sure about wi-fi, which would be essential for Jan and very useful for me.

We won't know if the Magnificent Mile condo that some friends have let Jan use in the past is available this weekend until this afternoon, but we suspect it is not.

We don't know if staying in the hospital into the weekend is an option.

(Mid-afternoon, Thursday)

The social worker has given us a lead on an apartment within two miles of the hospital. It looks fantastic. We also checked out a couple of extended stay hotels about 20 miles away.

Jan has rented a car, so that Jake and Paul can have a car, and is heading up to Chicago. Unfortunately for her, it is heavily perfumed to cover the smell of smoking. So, she is driving with the windows open, cold and nauseated.

I now have a PICC line in my left arm.

(Late afternoon, Thursday)

I get a very apologetic call from the nurse practitioner in charge of discharging. She and others who would be involved in the paperwork needed for my discharge have not been able to do what they need to do for me, due to an emergency on the floor for most of the afternoon. So the new plan is to stay one more night and have my jugular line removed tomorrow morning.

I'm OK with this development, though it's too bad that Jan had to rush up here this afternoon when it turns out she could have come up tomorrow morning.

As the nurse continues to apologize, I interrupt her. First, I understand that I am not the only patient. Second, I'm grateful the emergency wasn't me. Third, I think this actually works well for me. It allows me to have a night unconnected to the IV pole but still with nursing attention as needed. It's like a dry run for being out of the hospital.

(Early evening, Thursday)

The apartment is physically very nice, reports Jan, but it has a serious and probably disqualifying flaw. Like the car, it is redolent with what is sold as "air freshener" but which instead recreates the experience of being stuck in a broken elevator with someone who wears way too much cologne or perfume. All night. It nauseates Jan, and there is no way she can sleep there. Jan wonders if I would be able to sleep there either.

Right now, we're hoping the apartment complex has another apartment that hasn't been stink-bombed, but we suspect the air fresheners may be policy rather than an anomaly.

(Later in the evening)

The air freshener is apartment complex policy. Somebody in charge thinks it is better than the miscellaneous foreign smells (Chinese food, curry) left behind by some of the guests. We are working with one of the owners (who is out of town) and with the caretaker to see if an extended period of airing out will help. Give us curry anytime.

Jan may stay in the hospital tonight, choosing the nightly interruptions over the air freshener. And we may have to find another place to stay.

D+14 — Trying to Eat

First, the WBC:

0.1 D+8
0.2 D+9
0.6 D+10
0.8 D+11
1.7 D+12
2.6 D+13
3.1 D+14

The WBC is no longer doubling, but it's still growing fast enough that the doctor wants to send me home on Thursday (D+16). Thursday allows me to come back Friday and report right away on how things are going at home. If I were to go home Friday, I wouldn't be able to come back until Tuesday because of the weekend and the holiday, and that's too long a gap for the first return appointment.

In order for me to go home with the fewest complications, I should be creating my own platelets consistently, and I should be taking medications only by mouth. Otherwise, I would have to go home with an IV pole, or stay in the hospital over the weekend.

One of the medicines the Infectious Disease team wants me to take performs best when taken with a fatty meal. Normally, this would not be a problem, but my current appetite makes it hard to eat anything and especially rebels at fatty foods. This evening, just the smell of a fried fish sandwich and fries caused me to retch up some juice I had managed to get down a couple of hours earlier.

Fortunately, my nurse suggested I give Ensure another try. I had found it repulsive weeks ago, but this time I was able to drink an entire bottle. So, if I can't eat regular food, I can at least drink Ensure. I sure hope my taste recovers soon.

= = =

P.S. I added a music video from my family to the D+12 post.

D+12 — A White (Blood Cell) Christmas

(with thanks to several commenters for suggesting the title for this post)

WBC

0.1  D+8
0.2  D+9
0.6  D+10
0.8  D+11
1.7  D+12

The doctors are not bothering to look at the ANC because, at this point in the recovery from a stem cell transplant, such a high proportion of the white blood cells are neutrophils that it is extremely unlikely that my ANC isn't high enough.

At this rate of exponential growth, my WBC will be sufficient for going home in a couple of days.

In addition to getting the WBC where it needs to be, we also need to figure out how to adjust my meds to the reality of being at home instead of in a hospital, and also how to monitor blood counts and deal with shortfalls as needed.

Not home yet, but I can see it from here.

Especially with a little help from my extended family.

Dilaudid Daze

Note: This timeline may or may not be accurate. I don't really know. I know the events below happened, and most likely in the order below. I am less confident in the specific days. The problem is that, until Christmas Eve, I have found it very difficult to write while getting enough pain medication to be able to swallow.

(D+9, Thursday?)

The morphine did its job for my back spasm. However, the next day, my throat was increasingly red and sore, and I was increasingly reluctant to swallow. Different nurses had different approaches to this problem, as the problem gets worse:

• I just have to do this. (For a few rounds of medication, I am able to force myself to swallow tablets and capsules. Then I start gagging upon swallowing anything without a smooth texture.)
• We can crush tablets and mix with applesauce, which I might be more capable of swallowing. (For a few more rounds, I am able to do this. Then I start gagging on the presence of any grains of anything.)
• We can open the capsules and mix the contents with applesauce. (But eventually, I can't swallow even water or applesauce.)

At some point, we switch from morphine to dilaudid. One nurse says dilaudid is more effective, while the doctor says the two are essentially the same, but you use smaller doses of dilaudid to achieve the same effect. The main side effect of either one is confusion and sleepiness.

I often find myself waiting longer than expected to get my dose. First, there is a wait for the task of resolving my pain to rise to the top of the nurse's pile. Then, if we are changing the dose, there is a wait for getting through to the doctor on call and waiting for the dose inquiry to rise to the top of the doctor's pile.

Or at least, I think that's what's going on. I am not always competent to judge my nurses. One time, I asked for a dose of dilaudid around 6 in the evening. Around 8, I was talking to Jan and complaining that I had not received a dose for hours. My night nurse, who had just checked my records, overheard me and corrected me — I had been given a dose at 6:18 and either forgot or slept through it.

There were definitely other times that I was not fully in charge of my faculties, such as when I would fall asleep while eating or it would take me an hour to write a paragraph that, upon later reflection, was pretty incoherent and often full of repetition. In these cases, I was probably getting more than I should, even though it was not sufficiently managing the pain.

In a discussion with the nurse practitioner on my case, we decide it's time to switch to a pump.

A few hours later, I request my next dose of dilaudid, because my throat pain is no longer tolerable. My nurse tells me I can no longer request dilaudid, because my order has been switched to the pump. 

Patient: Can we set up the pump, then?

Nurse: No.  We don't have one on the floor. But we have put in a call to transport. 

Patient: (Uh oh...)

About every half hour, a different nurse pokes her head into my room to tell me that the pump is coming. I become increasingly skeptical and agitated. I make the point that it isn't a good policy to cancel one medical treatment in favor of its replacement until that replacement is actually in hand.

A couple of hours into waiting for the pump, a nurse observes that I can get a one-time dose of dilaudid. That would have been good to know a couple of hours ago, but I am relieved to finally get some pain medication.

I get a visit from a transportation manager, apologizing for the mix-up. Then I get a visit from the nursing manager. From the two visits, I gather the following:

• Our floor did not have a pain pump. Each floor is supposed to have one.
• The initial request for a pain pump got lost.
• My nurse was fairly new to the floor, which may explain why she didn't think of the one-time dose.

The pump supplies a continuous flow of 1 mg of dilaudid per hour, and I have a button I can press every 10 minutes to get an additional 0.3 mg. The idea is that if I ever pump myself into unconsciousness, I won't be alert enough to keep pressing the button.

On Saturday, I wake up with a tolerable sore throat. The pain pump is set to ensure that I receive at least 1 mg per hour, and I had added a few extra shots when I woke up during the night to pee. This tells me that even a fairly low dose does a fair job of managing the pain, which means the unmanaged pain wouldn't be so bad. Good news!

We lower the background dose on Sunday, which is Christmas, and I don't press the button all day. I can swallow without pain, so I'm back to my only eating-related problem being the fact that all food tastes terrible.

D+10 — Counts!

At this point, it's all about the counts.

My white blood cell count (WBC) has been essentially zero since my last round of chemo, as expected. The WBC is normally between 4000 and 10,000, and I need those white blood cells to fight infections. On D+8, they went from zero — listed as <0.1, because WBC is measured in thousands — to 0.1 (100). Yesterday, D+9, the counts were 0.2, and today, 0.6. They increase exponentially for a while, so they should reach the normal range in a few days. 

In addition to the WBC, the other noteworthy number is ANC (absolute neutrophil count). Neutrophils are a subset of WBC. In this case, we're looking for 500, the minimum value for being able to fight infection on my own. Above 1500 is normal. We haven't been measuring this yet, since there haven't been enough white blood cells to take a subset. I bet we measure ANC from now on.

D+7 — I Knew It Could Be Worse

My typical night is not a good night of sleep. In addition to the external interruptions of vitals checks and medication changes and blood draws — sometimes from a line and sometimes from a needle in the arm — I also get up every hour to pee.

Last night, shortly after getting into bed, I got a back spasm at my tailbone. I have had back spasms before, but usually with an obvious cause like a sneeze or a poorly executed lift of something heavy. This one was just out of nowhere. And it was bad.

It took a while for a nurse to come in and talk to me. She wanted me to rate the pain on a scale of 1 to 10. I always have trouble with this question. After all, no matter how much something hurts, it could hurt more. Can you ever reach 10? In this case, I decided that writhing and moaning was equal to 8, which was high enough for my nurse to make an inquiry. Of course, that takes time, during which I'm still writhing and moaning on the bed. The first drug they tried didn't help, and then they switched to morphine. Not very much morphine, but it did the trick. So, two hours after the start of spasm, I started my typical sleep in 60-minute pieces.

But that's not all! The mucositis has gotten worse over the course of today. No mouth sores or diarrhea, but the pain of swallowing has reached the point of me not being willing to eat. Since this afternoon, we have been trying to find the level of pain medication (currently morphine) that will allow me to swallow. So far, we haven't found the dosage, but I'm sure we will.

So, not a very good day. But I am one day closer to being through this uncomfortable phase. In a couple of days, we should see the start of countable white blood cells. Almost there.

D+6 — Could Be Worse

I am now six days beyond the transplant. Everything is going as expected: blood counts extremely low, no appetite (probably because all food tastes bad), and mucositis.

Mucositis is the inflammation of the mucus membranes lining the digestive tract, from the mouth to the anus. These cells, like leukemic cells, divide rapidly, and busulfan (the key drug in my most recent chemo) attacks both with ferocity. Symptoms are mouth sores, painful swallowing, and diarrhea, which are all the result of the mucus membrane dying and shedding.

My mucositis started a couple of days ago, with a slightly sore throat. Since then, swallowing has been a little painful, but it has not reached the point that I can't bear to eat. It can get that bad, and that could still happen for me. But it might not. Currently, my appetite and the way food tastes are greater obstacles to eating than the pain of swallowing.

Mucositis usually lasts five or six days, and I am into my third day. Every day it's not horrible is one more day I'm avoiding the most severe symptoms. Or, as I tell myself many times every day, about many things, it could be worse. (And it's going to get better.)

= = =

The next big event to look forward to is the appearance of white blood cells in my daily blood tests. The white blood cell count has been negligible for a while now. Some time around D+10, give or take a day, there will be enough white blood cells to count. Their numbers then typically grow very rapidly, and they are the primary factor in being able to leave the hospital.

In my case, they could start showing up as early as D+8, because I am receiving neupogen shots. This is the same drug my sister Mara injected herself with before having her stem cells harvested. In my case, the idea is to speed up stem cell production so that I get my white counts up a little sooner than I would otherwise, because then I can help fight my current infection(s).

D+2 — Fever Gone

No fever at all today. It might be the round-the-clock Tylenol, or it might be, if I do have an infection, that one of the powerful antifungal/viral/bacterial medications I am on is keeping that infection in check.

The cause of the sustained high fever remains a mystery. (Solving the mystery is now a matter of curiosity rather than urgency.) Here are the suspects:

• An infection stirred up by the sinus surgery the day before my transplant (I did have a low fever before the transplant)
• Reaction to the transplant
• Some other infection

Although I am on Tylenol now, that was not an option during the fever. The key pre-transplant chemo drug, busulfan, is hard on the liver, and Tylenol accentuates the effect.

Instead of Tylenol, I got a special pad for my bed. It's a thin plastic pad with a honeycomb of channels that fill with water, connected to a machine that keeps the water at whatever temperature you want. Even though it did not decrease my temperature, at least for the first day, it did increase my comfort. Or maybe it kept my fever from getting even higher.

I'm now rid of the fever and the pad. My complaint of the day is a strong metallic taste in my mouth. It makes everything taste terrible. I hear it's a common post-chemo experience. 

It will pass.

And then something else will be my complaint of the day.

And as long as I have a complaint of the day, it means I have another day. Under the current circumstances, that's a victory.

Transplant Day

Tuesday was transplant day. A little after 10 a.m., I got four bags of my sister's stem cells.

The rest of the day I was very tired. Then I started running a fever, which continued all night.  The nursing assistant kept taking my temperature, and the temperature kept rising: 38.5, 39.3, 39.7, 39.9.  Normal is 37.0 (98.6); 38.0 is when they start calling it a fever. 38.5? If I weren't feverish, I could do the conversion. Instead, I page the nursing station and ask for the conversion so that I could text Jan a number she could understand. (39.9 = 103.8)

Wednesday... still feverish, with occasional breaks.

More later...

They Missed an Option... Thank Goodness!

Last night, when ENT was describing the two outcomes of today's sinus surgery, there was the lucky outcome (no fungus, can't breathe through my nose for a week or more) and the unlucky outcome (fungus, can't breathe through my nose for a week or more, and I'm in a precarious battle after the transplant).

For some reason, they missed what turned out to be the actual outcome, which was even better than the lucky one: no fungus, I should be able to breathe through my nose in a day, and they removed a clown car's worth of mucus, blood, crud, old packing, and other mysteries from my sinuses, left over from their earlier expeditions. I think of this as a delayed version of Carry In, Carry Out.

They did see something suspicious, but it's already checked out.

Tomorrow is Transplant Day.

Minor Monday Becomes Major

I didn't think Monday was going to be as important as I have now learned that it is.

I thought it would just be the last day before my stem cell transplant, and the day I got a new line. For several days, my attending physician has talked about how we were just counting down the days to transplant, and the Monday would be a little busy because we would be putting in a temporary line for the transplant. (After two infected central lines, my team has decided to avoid long-term ports for me.)

Over the last few days, the ID folks would occasionally stop by to say everything seemed fine, which also suggested a clear path to Tuesday's transplant.

I had not seen the ENT staff since Wednesday, when some ambiguous imagery on a CT scan encouraged them to take a look with some bedside tools. They could not see as far in as they would have liked, but in the absence of symptoms — pain, vision problems, fever — they also didn't too concerned. Without hearing any more from them, and with my attending's repeated description of minimal action on Monday, I thought I knew what Monday would be like.

Then, for not the first time in this round of treatment, I get a visit from anesthesiology about an upcoming sinus surgery that I am not expecting. This throws me off balance. I feel like the various teams of doctors looking after me aren't communicating with each other, because I feel like I'm getting different messages from different teams. I let various doctors and nurses know how I feel about this.

At one point, I'm wondering whether the sinus surgery can actually prevent the transplant from happening. (It cannot.) The surgery does not sound too bad — mostly a looking around — but I still dread it, for multiple reasons.

If I'm lucky, they clean out some crud left over from earlier visits, they don't find anything new and alarming, and they pack my nose full of crap for another week and a half. Transplant on Tuesday.

If I'm less lucky, everything is the same as above, except that they find more active fungal infection hiding underneath the crud, which they (again) do their best to remove. Then there's a complicated couple of weeks as the fungus tries to exploit the missing immune system, the doctors battle the fungus with medications, and the new immune system boots up after the transplant.

So, I'm not happy about my upcoming surgery. I'm not happy that it was a surprise, I'm not happy that I'm going to get my nose packed again. I'm especially not happy that my illusion that I was past worrying about the fungal infection has been broken.

But, on the other hand, it needs to happen, so I'm glad it's happening. We need to know what we're dealing with.

Deck the Halls

Because we have always visited family in the Boston area over the holidays, we have never decorated our house. With my upcoming travel restrictions, the Seeleys will be spending their first Christmas in Champaign since Jan and I moved out here in 1987.

On Saturday, a team from Human Kinetics visited to give the Seeley home an uncharacteristic holiday makeover. Our neighbors are going to wonder who is living at the house and what they have done with the Seeleys.

Doug untangles lights under the guidance of Steve's kids.

Kim, Dalene, and Jill prepare exterior decorations.

Joanne and Keri before working their magic on
the tree.

The Seeleys, real tree people since childhood, have made the transition
to a ... reusable tree. This was our wonderful work crew,
minus the Ruhlig family that had to leave earlier.

Kerri wonders what she has gotten herself into.

Wow!

Enjoying some well deserved refreshments.

Looking good at night, too,

Yard Work

I usually handle most of the yard work at our house. I don't resent it; I enjoy it. I like the smells, the colors, the sounds, the effort, the results... Unfortunately, one aspect in particular, the smells, is inextricably linked to the molds and fungi that keep trying to establish colonies in my head and/or lungs, with potentially deadly results. So, no yard work, even when I was home in the spring and summer.

Since my medical team did not approve my leaving the hospital to take care of the end-of-fall yard work, we were blessed with a work crew.

Bob goes the solo route.

Mary, Janna, and Mandy take a team approach.

Lisa, Mara, and Ellen

Paul likes letting machines do some of the work.

Fred and Mark round out the crew.

All Aboard for Transplant Station

My chemo started Tuesday morning. 4:00 a.m. in the morning. Lots of bags and pre-meds and blood draws. I didn't care. No noticeable side effects. On the first day, it's Fludara and Campath.

Repeat Wednesday morning, with the addition of Busulfex. Still not seeing any side effects, including the one that would alarm me most: changes in menstrual cycle. Sleep is constantly disrupted, as is the day time, but I don't care. I had a blood test drawn in the morning to test my response to a dose of platelets which I would receive several hours later. They're going to be disappointed in the results, and I'm going to get stuck again later so they can get real results. Doesn't bother me.

I decided it was time to shave my head, since I was not fond of the retreating glacier model of hair loss:

Proof that cranial cooling is happening, and it's caused by man.

This is my "kick leukemia's butt" look.

Day 3 of chemo is today. Still feeling good. I know the chemo is the worst part of treatment for a lot of people, and I feel fortunate that that is not the case for me. Of course, I get to grapple with brain-eating fungi and emergency surgeries, so maybe I'm getting the short straw after all.

Speaking of fungi, the ENT team is still nosing around my sinuses like pigs after truffles, trying to decide whether to start digging again. A recent CT scan showed "some stuff" where ideally there wouldn't be anything, but where there often is stuff even in perfectly healthy people. It seems like still an open question for the ENT team, but I get the sense they are leaning toward watchful waiting in the absence of symptoms.

Two more days of chemo (Friday, Saturday), two days of rest (Sunday, Monday)... Transplant on Tuesday!

The Good News Is...

My biopsy results indicate that I am ready to proceed to the transplant phase. (!)

Since the failure of the October chemo, and the sinus infection, the plan has been to avoid infection, try a different chemo, do a biopsy, and —if the biopsy results were as desired — head into the transplant phase.

Left unspoken has always been, what if the biopsy results weren't good? Fortunately, we can skip right over that possibility now.

A Widening Path

My blood counts and I have been doing what we should this past week. No white blood cells. No fevers.  Clear lungs. No indication, either from test results or symptoms, that the fungal infection in my sinuses is active. Daily walks (about 30 minutes). Eating well.

My reward is that I have a bone marrow biopsy scheduled (originally Friday, now moved to today for staffing reasons) and a tentative chemo+transplant schedule starting next week.

Yesterday, I had a lot of doctor visits. I had been requesting a visit from the ENT folks, to confirm that the crud I still have in my nose is an expected part of the recovery. I got one visit, got my confirmation after a little viewing with a pen light, and thanked the doctor for reassuring me. I told here that was all I needed — just a figurative (but informed) pat on the hand telling me I'm doing fine. Later in the afternoon, a larger ENT team showed up, somehow under the impression that I was increasingly concerned about my sinuses. For them to really tell me all is well, they would need to run a scope up my sinuses. This is mildly uncomfortable, but the bigger problem is that it carries risks. With my blood counts as low as they are, sticking anything into my sinuses could, despite sterilization precautions, introduce some infectious agent that I can't fight, or could restart the bleeding that finally stopped after three weeks. In the absence of clinical evidence of an infection, it's not worth the risk. Which is fine with me.

I also had a couple of visits from the the Infectious Disease team. The first informed me that they were running some tests on the vulnerability of my particular fungal antagonist to one of the antifungal meds I was receiving. The second informed me that they had just learned that that particular antifungal appeared to be quite ineffective, so they were switching me to something else. Yikes! I'm glad they did the legwork and figured this out before anything bad happened, but it's still unnerving.

My Campaign for Quiche

I have mentioned before that the improvement in the food service has been tremendous: many new healthy choices, an after-hours menu, and daily inquiries about me and my food orders. Patients can also order from the staff cafeteria menu for lunch and dinner on weekdays, further adding to the variety available.

And I have found the food service open to modifications. One common modification for me lately: the hummus appetizer with cucumbers, carrots, and pita chips, substituting extra cucumbers for the carrots and pita chips.

There are two women with responsibility for two floors, and I think they stop by each room at least once a day to check in with the patients. I think one may be responsible for recording information about each patient, while the other one is focused on helping patients find items that may appeal to them, but they seem to ask similar questions and make similar suggestions. And there is an occasional phone call asking for my overall feedback on the service.

My feedback: I am very impressed with how thoroughly the hospital system has embraced the idea that eating well is a critical part of the patient experience.

(Ironically, as I write this, I have experienced my first delivery delay. We pretty consistently receive our order within 45 minutes, and tonight's dinner took 90 minutes to get here. Given the length of my current stay, that's still very good performance overall.)

On Sunday, Jan visited with some leftovers from the Champaign Thanksgiving dinner she and the boys had made on Friday. (I had joined via Skype, from a laptop sitting on a counter overlooking the dining room table.) These leftovers were much better than the Boston Market offerings we had shared on Thursday. My favorites were a cranberry chutney that Jan made, pumpkin cheesecake that Paul made, and a ham and gouda cheesecake quiche that Jake made.

While enjoying my leftovers, I had a revelation: there was no quiche on the menu, and there should be. For many chemo (and other) patients, it is hard to get enough nutrition. People have low appetites, taste buds have gone haywire, mouths have sores in them. In general, eating is a chore. The typical solution is to offer these patients a liquid nutritional supplement such as Ensure or Boost, which packs a lot of carbs, protein, and fat into a small drinkable package. My personal experience, and I know this is true for others, is that these drinks are nauseatingly sweet. I can't drink them, especially with chemo mouth.

But cold quiche, on the other hand... loaded with carbs, protein, and fat; smooth and creamy; not sweet... perfect.

The next time my regular food service visitors stopped by, I pitched quiche as a menu addition. A nutritionist also stopped by — a weekly occurrence, I think — and I made the case for quiche to her, too. They all agreed it would be a good idea and said they would pass it on. One of my daily food service visitors also told me quiche is available in the staff cafeteria two mornings a week. Patients cannot order from the cafeteria in the morning, but she promised to bring me some personally. Which she did. (It was not as creamy as I think a quiche should be, but it was decent.)

Operation Quiche is not as significant as my previous Patients Need Better Food Campaign, but that's a great thing. When you are suggesting a single addition to the menu instead of arguing for a total overhaul, you're in a pretty good place.

My Black Friday Tale of Very Mild Woe

I had been both dreading and looking forward the last day of this round of chemo. The cold hand and foot treatment is no fun, but Friday would be the last one.

I was all set. I had the next Frasier DVD in the player. I was mentally prepared for the two hours of chilling. Once I'm iced-in, I'm stuck in bed with my DVD controller and my little handheld urinal.

As soon as the drip started, I knew something was wrong. On Thursday, I had been watching disc 1 of Season 2 of Frasier, and Niles was barely repressing his infatuation with Daphne. Suddenly, they appeared to be a couple, with Daphne pregnant. Was it a dream sequence?

Then it came to me. When Jan and I had earlier been looking through the DVDs, we noticed that one of the box sets had two Disc Twos, and one of the extras was a different color. Possessing between us only two Ivy League bachelor's degrees and two U of I master's degrees, we just figured it was a mystery. If only we had had a kindergartner with us to suggest that the red disc belonged in the red box.

So, I was stuck many seasons in the future from where I had left off the day before. And since that was the worst thing that happened to me all day, it was a pretty good day.

Andy Borowitz

From a comic master, Andy Borowitz, on the way medical strife can lead to a deeper gratitude:

http://www.youtube.com/watch?feature=player_embedded&v=4mvhjZ-ClLw

A 21st Century Thanksgiving DInner

Jan, Jake, and Paul came up to Chicago Wednesday evening, staying over for Thanksgiving. Jake flew in from Philadelphia. As noted earlier, Jake got off the plane with a runny nose and a cough, putting him on the corridor's Do Not Enter list. But we made the best of it.

Staff from food service, who stop by for a quality check at least once a day and sometimes three times a day, had highly recommended the dining service's macaroni and cheese and the sweet potato pie, special for Thanksgiving. I was skeptical about the macaroni and cheese, since I had ordered it before, but she assured me that they made it the real way for Thanksgiving. So, I ordered the mac and cheese (take that, Pat Robertson) and the sweet potato pie, to supplement what my family was bringing from Boston Market. The dining hall had the mac and cheese, but they were out of pie.

Jake in exile in the Au Bon Pain five floors below.

Video chatting with Jake over lean pickings from Boston Market.

Paul and Jan show off their Yellow-Bellied Sneetches costumes.

The dining hall mac and cheese arrived shortly before Jan with the Boston Market bag. I couldn't tell the difference between the special Thanksgiving version and the usual awful stuff. Then again, not much tastes very good to me these days, so I'm not the best judge.

By 4:00, when Jan got to Boston Market, most of the sides we wanted were gone. The remainders were OK, but I really missed the cranberry-walnut relish we had seen on the menu.

We had our meal, chatted with Jake in exile, and later in the evening they all headed down to Champaign for the weekend. Jan is coming back up on Sunday for the day, after taking Jake to the airport.

A little later, my night nurse came in with good news — the nurses had a few extra pieces of sweet potato pie and were offering them to patients. Sure, I'd love one.

It was awful.

But the Thanksgiving dinner was basically as good as it could be, under the circumstances.

Coolest Mani/Pedi Ever

I have finished three of the five days of chemo treatment. Each dose takes two hours.

The first time someone talked to me about the side effects of clofarabine, I was told there usually weren't any.

A few hours before my first dose, I receive the standard patient information sheet, which lists the same side effects I have seen on all the other chemo info sheets: chance of infection, feeling dizzy, feeling tired or week, nausea or vomiting, loose stools, skin irritation, headache, mouth irritation, anemia. I think these are all symptoms brought on by the severe drop in blood counts, not direct side effects of the medication, which is why they appear on every info sheet. Anyway, I'm feeling pretty comfortable about the whole thing, because I have tolerated the chemo treatments before relatively well, except for infections, and I'm already as vulnerable to infection as I can get.

Shortly before my first dose, the nurse comes in and asks, "So, did they tell you about the cold packs?"

No, they did not.

An until-now unmentioned side effect of this medication is Foot and Hand Disorder, in which the chemical wreaks havoc on the soles of the feet and the palms of the hand, causing massive blisters. Some studies have indicated that keeping these areas very cold while administering the chemo reduces the incidence of this problem by reducing circulation. Massive blisters on my palms and soles would definitely cramp my style, so I'm up for the cryotherapy.

On the first night of this round of chemo (Monday), the nurse wraps my feet (tops and bottoms) with chemical cold packs, and hands me two more, one for each hand. My job is to let the nurse know when they aren't cold anymore, so we can switch for new packs. I'm a little concerned, because I no longer have full feeling in my feet — a result of past chemo — and I wonder whether I will be able to tell if the packs are too cold. It turns out I can still feel cold just fine.

Anyway, the first round goes pretty well. About every half hour I decide the cold packs aren't cold enough, and two to ten minutes later the nurse comes in and replaces them. (One of the delays was because they didn't have enough cold packs on the floor.) With my feet bound in cold packs, I get to use a handheld urinal while sitting in bed. Tricky, but I've had practice.

On Tuesday, I have a different nurse. She asks how it went the first time, and I tell her it wasn't bad at all, and she starts gathering supplies: cold packs, gauze wrap to fasten packs to my feet. She gives me a couple of activated cold packs to hold while she leaves to get something else. She comes back with six small bags of ice.

"Those cold packs just are not very cold. I was talking to some of the other nurses, and I think we should try ice bags. Or, to make your hands colder, we could get a tub of ice and you could bury your hands in it."

"For two hours?"

"Yes."

"Ice bags will be fine."

So, my nurse straps an ice bag to each sole, and hands me two ice bags to hold.

"See? These are much colder."

Yes, they are.

I have a DVD of "Frasier" loaded up, so I'm ready to go. The ice bags are colder, but I get through the two hours with help from the episodes; a call from my niece Isabel; and another call from my parents, brother Karl, sister-in-law Kate, and their sons Ben and Garrett. Kate and Karl are visiting my parents from upstate New York for Thanksgiving. Jan and the boys are coming up Wednesday into Thursday for our own version of Thanksgiving.

My feet hurt as they warm up, my palms are bright pink, as I suspect my soles are. It's been a very special spa treatment, as designed by the White Witch of Narnia.

Day three of chemo is Wednesday. We have been moving the time up two hours each day, since 8:00 p.m. is not a great time to start chemo. By today, we're starting at 4:00; it ends up being 4:10 before the pump actually starts. I'm pretty locked in to being done at 6:10.

At 5:10, I text Jan that I have an hour to go. A little later, I request new ice bags, since the ones in my hands are more water than ice. "You call this cold? Bring me more ice!" I'm hoping I don't need to change the ones on my feet, since they're feeling OK, but no such luck. One of the pumps starts beeping, and my nurse spends some time getting it to shut up. I'm watching "Frasier."

At 5:40, I text that I have half an hour to go. She is picking up Jake at the Bloomington airport and then driving up here with the boys.

5:55, 15 minutes to go.

6:05, 5 minutes to go.

6:10,... no pump alarm.

6:15,... no pump alarm. I call for my nurse. "Can he bring you anything?" "No, I just have a question."

I ask my nurse how much time I have left. "About 15 more minutes... that trouble with the pump slowed things down."

Aargh. I can do 15 more.

Fifteen minutes later, my nurse comes in to do a flush. "Can I take off the ice bags now?"

No. My nurse wants to wait until the flush is done, another 5 minutes.

Lucky me. A bonus 25 minutes of the spa treatment, at no extra charge, thanks to the merciless minion of the White Witch who is pretending to be my nurse. If I had known, I could watched one more episode.

Checking in with Jan and the boys, I learn that Jake has a runny nose. This means he cannot visit — a big disappointment, since visiting was the main reason he flew out from Philadelphia for the holiday.

I need to pee. I don't see my urinal, so I assume my nurse took it away when he released me from my ice bags. I head to my bathroom on numbed soles, which feels really weird, like somebody taped blocks of wood to the bottoms of my feet. On my way back to bed, I see my bedside urinal is still there. Oh well. I get into bed and take a nap.

On the bright side: Three down, two to go.

Also, first day without the gauze mustache, because my sinuses have (mostly) stopped draining bloody mucus. I am enjoying immensely something I do not recommend to anyone: breathing through one's nose for the first time in three weeks.

Onward!

I had my first shower in a few days, including my first shampoo since my initial sinus surgery. Showers are currently quite tricky. I have to find a window of time when I am not receiving something through my lines. We have to wrap the PICC line in plastic and cover the site from which the Hickman was removed. (I can't see it, but everyone who looks at the infected Hickman site says it looks terrible.) And I have a mustache of gauze under my nose. I was so preoccupied with keeping various dressings dry and keeping the gauze mustache in place with one hand while dispensing and applying shampoo with the other hand that I was halfway through my shower before I realized I still had my glasses on.

I just heard that my chemo (clofarabine) is starting today. That's good! This means I have navigated not only the infection challenge but also the scheduling challenge of aligning treatment dates with biopsy dates, transplant dates, and the schedules of other transplant patients. I'm not the only patient preparing for a transplant, some key staff do not work on weekends, and there are limits to how many patients can be processed on a given day. Anyway, it's working out.

So, starting today, five days of chemo, seven days of recovery, biopsy... then, with the right biopsy results, more chemo, and then a transplant. Last Tuesday, when we learned that the leukemia had survived the October chemo treatment, was a rough day. Since then, everything has broken the right way.

Perhaps this turn of fortune is due to the flood of support coming my way. Cards and emails (often with humorous links — gotta keep laughing) and positive thoughts and prayers from all over, a complete set of "Frasier" episodes, work parties and meals at my house... 

The most unexpected support, and almost certainly the largest in terms of the number of prayers, comes from the Swat Valley in Pakistan. If that location sounds familiar to you, it's most likely because the Swat Valley is the site of frequent U.S. drone attacks against suspected Taliban. It's also the home of a woman who is part of an English conversation group that my mother hosts for immigrants. So, five times a day, this woman's very large extended family prays to Allah for my health. (This gives me prayer coverage in all three Abrahamic religions.)

As a friend from high school commented recently, even a narrow path can get you where you need to go. Onward!

Step by Step

I am successfully navigating the current path, getting infections under control before the leukemia gets out of control.

I have been running low-grade fevers every few days, which the infectious disease team has decided are not important. The ID team also suspected a surface infection of my Hickman triple lumen (the port into my chest for putting in stuff and taking our blood samples) as the source of the fevers. Yesterday, I got a PICC (peripherally inserted central catheter) line into my arm, which allowed the removal of the Hickman. So far, no fevers since the Hickman came out.

The fungus is no longer considered an issue. Fungal infections take a long time to be completely eradicated, especially with a weak immune system. But there is no sign of an active infection.

This morning, ENT removed splints and packing from my nose. It sounded worse than it turned out to be. I still can't breathe through my nose, because the nasal passages are blocked with clotted blood and some stuff they put in there to encourage clotting, but I'm getting closer. I still wear a gauze mustache to catch bloody drainage out the front. Several times a day, I now spray saline solution into my nostrils to help break up the crud in there. I also got a great tip from the ENT folks which is going to save me a small amount of grief as long as I'm wearing the gauze mustache. Instead of taping the gauze under my nose —which leads to repeated removal of tape from my face, which hurts — the ENT folks just use a folded face mask that hooks over the ears. I wish they had passed that tip along nine days ago, but better late than never.

Here is the current treatment plan, subject to change (as always):

1. Continue to have a quiet (infection-free) weekend, and maybe Monday and Tuesday, too.
2. Start another round of chemotherapy, using a different class of chemicals than we have tried before. Instead of induction chemotherapy, which is what we did in October, this will be a bridge chemotherapy, used to buy time after one chemo treatment in preparation for transplant.
3. Twelve days after that chemo starts, do a biopsy. Again, we need to see barely any leukemia at that point.
4. If we don't see what we want to not see, do a conditioning round of chemotherapy (clear out the marrow) and then do a transplant.

My dad was visiting the last couple of days. He is down in Champaign now, doing a few home maintenance tasks and providing an adult presence while Jan is up visiting me for the weekend.

Looks Like Clear Sailing Through the Sinus Passages

The return trip to my sinus passages yesterday has so far yielded positive results in the most important ways. I went down at 3:00 p.m. for my 2:00 p.m. procedure, which started around 5:00 p.m. A kind secretary brought me a phone so that I could call Jan and let her know about the delay, so that she didn't get concerned that my procedure had turned into something much more involved than we were anticipating.

The surgeons did not see any more fungus. They took additional samples, to make sure. The initial tests on those samples came back negative. They still need to wait a few days for a final verdict, but so far, so good. I think the packing stays in for that same period of time.

Because they took more samples, my nose is still packed with internal splints and other stuff. There is less packing than before, and there is less drainage both out my nostrils and down the back of my throat. (More small victories.) I still have to breathe through my mouth, which quickly gets intensely dry. Last night, each time I woke up, my mouth and lips were so dry that I could not close my lips around a straw or the lip of a cup. I had open my mouth, pour a little water in, and then swish it around to moisten the tissues enough that my mouth would actually function.

I have a breathing mask that supposedly provides more humid air. I have been using it for the last several days, and it seemed to be helpful. For some reason, it isn't helping with the current mouth dryness. Sipping water does help, but that technique is incompatible with sleep.

Some time today, I am going to get a new line for medications and transfusions. The one going into my chest is infected and needs to come out. So far, based on tests and the relative lack of fevers, that infection appears to be contained on the surface of my skin.

Never a dull moment! I want some dull moments.

A Narrowing Path

The biopsy results are in, and the leukemia survives. Ideally, we would start treating the leukemia immediately with something new.

In the less-than-ideal world I'm living in, we can't do that. Complicating matters is the fungal infection that the surgeons think they were able to cut out of my sinuses six days ago. The thing about infections is that they are hard to totally remove physically, which is why I am still being flooded with antifungals.

This means we are trying to pick our way through a tricky and narrowing path.

Even though I barely have an immune system, I do have a trace of one, and it is presumably fighting any infection I might have, including any residual fungal infection. If there is any infection lurking, attacking the leukemia would wipe out what little immune system I have and unleash infections.

So, we will be monitoring me for signs of infection, beginning tomorrow when the ENT surgeons revisit my sinuses. In keeping with the tone of the day, I learned about this plan in a less-than-ideal way. Someone from anesthesiology stopped by my room early in the afternoon to talk about her role in the upcoming surgery that nobody had yet discussed with me.

Ideally — and I feel like I'm due some news from the ideal column — they don't see anything bad and they are able to remove the packing and other stuff that has stuffed up there for the last six days. Then the oncology team and the infectious disease team weigh the confidence in there being no infection against the risk of leukemia getting out of hand. At some point, and this is what passes for ideal these days, I get another round of chemotherapy, I think in preparation for transplant.

The negative result is that they see more fungus and have to do more surgery, which means I'm further from being able to treat the leukemia, which would give the leukemia more time to grow and cause trouble.

My doctor was pretty somber when delivering the news. It felt like a transition from the odds being with me to the odds being against me. For all I know, that transition happened a while ago, but this is the first time I felt it.

Odds are about populations and probabilities. My case is about me. I feel healthy and hopeful, taking the next step, and then the one after that.

I Know an Old Lady Who Swallowed a Fly

To treat the fungus they routed out of my nose as last Wednesday turned into Thursday, I am taking a couple of antifungal medications. At least one of them works by poking holes in the fungal cell walls.

Unfortunately, a side effect is that it also does the same thing to some cells in the kidney, causing me to shed potassium.

To treat the loss of potassium, I am taking a lot of intravenous potassium and also a diuretic that helps the body hang on to potassium.

Unfortunately, a potential side effect of the diuretic is that it could cause me to develop breasts.

I'm not sure what they'll give me to treat that side effect, but I'm sure it will have its own interesting side effects.

On the other hand, having breasts would open up some new career options: bearded lady, drag queen.

= = =

I am now in my sixth day of having my nose packed with stuff, which means sleep remains difficult to come by. Sunday night, I got an Ambien, and that helped. I still had to wake up every hour to pee, because I'm having drugs dripped into me all the time, plus liquids to make me pee. My nose is still bleeding, and I'm still hacking up bloody mucus, both of which are disgusting, but still better than peeing blood, which I have not done for a while. Hooray for small victories!

Last night, I was ready for my Ambien again. However, I had a fever, which meant more tests, including a chest x-ray, so they didn't want to give me a sleeping pill until after the x-ray. Which didn't happen until 4:00 a.m., due to emergencies that took priority. While it was disappointing to have my night ruined even more than usual, I'd rather be the non-emergency patient.

I did not pass out during the x-ray — another small victory. Sort of. I cheated by taking the x-ray while sitting on a stool.

Later today I should get a lot of information: biopsy results and a treatment plan. Until then, I just try to catch up on sleep.

More to Say Than Energy to Say it

Wednesday was great until late in the afternoon. Then it all turned very dark very quickly.

In an extremely uncreative reprise of the original movie, the ENT (ears nose throat) people made increasingly concerned and invasive and painful visits to my room until they were wheeling me down for emergency surgery at 10 at night. It was sinus surgery this time instead of oral surgery, but otherwise completely derivative.

I've been recovering since, which involves listening to the radio and dozing off in 20- and 30-minute intervals. My sinuses are packed with gauze, and they are still bleeding, which makes it nearly impossible to sleep. Today we have figured out a way to breathe more humid air that has made it slightly easier to sleep.

Had a bone marrow biopsy Friday. Results Monday or Tuesday.

Jan's visiting this weekend. My dad is coming later this week.

More later when I perk up.

Second Harvest

Tuesday is the second day of collection. We don't really know what to expect.

A doctor comes in and tells me they collected 2.6 million cells today! That gives us a total of 3.7 million, which is well on the way to 5 million. Very exciting. Wednesday's collection seems likely to top us off at 5 million.

Also exciting is the first citing of a neutrophil. Note the use of the singular form. This corresponds to an absolute neutrophil count (ANC) of 10. I don't actually get that excited, since I remember my ANC bouncing between 0 and 50 during my hospital stay in September. But 10 is definitely not zero, and maybe tomorrow we'll see more growth.

On Wednesday morning, Mara calls me with two pieces of news. They didn't get 3.7 million cells after all, they only have 3 million. (There is a preliminary count, which was too high, and a final count.) The second piece of news is that they aren't going to collect any more. Mara's platelets have dropped by half each time, leaving her in the 40s on Wednesday morning. So they decide to stop collecting. 3 million is enough, and they don't want to harm her.

So, three million it is.

First Harvest — 1.1 Million

(Later on Monday)

Monday is Mara's first collection day.

There had been talk of using a femoral vein instead of her arm, since there is some thought we didn't get the optimal number of stem cells in the winter because her veins were not cooperative. However, they went with the arm again today. They had no problem getting the volume of blood they wanted, but there were not as many stem cells as they hoped for.

They collected 1.1 million today. I thought this was pretty good, since I remember 2 million being the target in the winter. We only got 1.7 million back then, but the doctors decided to proceed anyway. It turns out 2 million is the minimal amount they like to transplant. The real target is 5 million.

Mara came over to my room around dinnertime, bringing with her some excellent coffee ice cream. I'm gradually adding foods to what I feel like eating, and coffee ice cream is definitely on the list.

Things That Go Bump in the Night

(Monday)

I had been running a mild fever in the evening for a few days, but not high enough to warrant any action. On Sunday evening, my fever reaches the magic threshold —38 Centigrade.

This means tests, throughout the night. They don't take any chances with fevers.

Around 1:00 a.m., Transport arrives to take me down for chest x-rays, to look for pneumonia. He wheels me to the elevator, down to the scanning floor, through a maze of turns and doors to the x-ray waiting area, which is empty. I am feeling pretty weak, and I am just about to get out of my chair and lie down on a couch when the tech comes in for me. As we're rolling down the hall, I feel a little flushed.

He takes me into the x-ray room and has me stand up with my chest against whatever it is they shoot us against. I'm tired. He aligns me and the background the way he wants, and steps out of the room into the control room. A voice tells me to breathe in and hold it, and then to breathe normally. I'm feeling lightheaded. I say out loud, "I'm feeling lightheaded."

The next thing I know, I am regaining consciousness in the wheelchair. I'm sweating and disoriented. The x-ray tech is next to me and tells me I was out for two minutes. (None of the doctors or nurses I later tell this to believe the two-minute estimate, chalking it up to the natural tendency to overestimate the duration of scary or unpleasant events.) The tech brings me a wet hand towel to cool me off, and somebody calls for the nurse from my corridor to come down.

By the time the nurse arrives, I feel fine. She gets into protective garb — why am I not in protective garb? — and stands next to me while we take the x-ray. And then she wheels me back to my room.

There's no obvious explanation for me passing out. My blood pressure is OK. I have only a light fever. I do sometimes get lightheaded when I stand up after sitting for a while, but in this case I had been standing for a while before all the blood suddenly rushed away from my brain. I had a nearly identical experience my first day back, during a CT scan of my head. (Sorry, I forgot to blog about that.) In that case, I was dehydrated. Maybe this time was a psychosomatic replay — back in the same corridors, standing up, getting aligned with the machine. Next time I'm doing one of these tests, I'll know to warn the tech.

After I get another hour or so of sleep, they're collecting blood for blood cultures. They also leave a kit for collecting a urine sample. The collection protocol is far too complicated and too time-consuming for me to comply with at 4:00 a.m. — I really have to go. At 6:00 a.m., I am able to follow the rules. Disturbingly, what initially comes out is blood instead of urine. Just a little, but still. The only amount of blood that is OK in these circumstances is none. I would have been even more disturbed if the same thing hadn't happened about a week ago. It doesn't hurt, there is no sign of infection, and I do have really low platelets. It's still just wrong. If it happens again, say my doctors, we'll consult a urologist.

Now, each time I pee only pee is a small victory. Every few hours, another win...

What's Going On

Not a question; an update.

Not much is going on with me, which is ideal. Last night was the first really bad night of sleep I've had since the first night. In general, the interruptions have been minimized and consolidated to midnight and 4:00 a.m. Last night, my nose was so congested I had to breathe through my mouth, which in the very dry hospital air leads to a parched mouth in about 15 minutes. So, every 15 minutes, if I had fallen asleep, I would wake up with a parched mouth and need to drink a little water.

I asked for some relief around 2:00 a.m. and was brought a nasal spray that the nurse said would work wonders. I suppose it might be helpful before your nasal passages become solidly blocked, but once that happens, the spray doesn't actually go anywhere useful.

At 3:30, I asked for a sleeping aid. At 4:00, the nurse told me she was waiting for a response from the doctor. At 4:30, the nurse told me the doctor had denied my request, because if I got a sleeping pill in the early morning I would sleep for much of the day. I said I didn't see the problem with that, since I was probably going to sleep much of the day anyway, having not yet had any sleep. At 5:00, the nurse brought me a sleeping pill.

During the day, my sinuses have been unplugged, and I have been using the nasal spray to try to keep them that way. I also will be getting a decongestant and a sleeping pill tonight.

My sister, Mara, came to town Sunday evening, in advance of tests on Monday. Tomorrow (Thursday), she will donate lymphocytes, which I may or may not use in the future. Then she will start taking her neupogen to stimulate stem cell growth. She will be getting a higher dose this time, so she may feel more uncomfortable. She'll head down to Champaign on Friday and come back Sunday to begin stem cell collection on Monday.

Last time, the harvest did not yield the ideal number of cells. Among the possible reasons are the difference between our weights and some difficulty with her veins. My doctor does not think the lower-than-optimal number is related to my relapse, because for a while after the transplant all the numbers looked as good as they could look. However, it doesn't hurt to have more.

The higher dose is one part of the effort to collect more stem cells this time. They will probably also use a femoral vein rather than a brachial vein, and if that's not doing the job, they may even put in a temporary central line on Tuesday. After the harvest, Mara can go home.

Meanwhile, my instructions are to cool my heels until November 15 while we wait to see my mid-term response to the most recent chemo. The early results are what they should be: my blood counts, and especially my white counts, are very low. I haven't lost my hair, though I did see more strands than usual on the washcloth during my last shower.

When we get to November 15, there are several paths we could go down. If there is no real blood count recovery, we will probably wipe everything out with another round of chemo and proceed to a transplant. Given my chemo response history, this seems like the most likely option.

If there is a solid recovery, and if a bone marrow biopsy shows that all or nearly all of the new marrow cells are offspring of Mara's cells from the previous transplant, then it might not make sense to wipe everything out and do another transplant. Instead, I might get a donor lymphocyte infusion (DLI). The idea would be to supercharge my immune response, hoping to find the right balance between killing any remaining leukemia cells and not doing too much harm to various organs (graft vs. host disease).

A third path, and I think the least likely, is that the blood counts look so good that we just let me recover without further intervention, closely monitoring the counts. Sometimes patients go into remission after this round of chemo.

= = =

In sports news, our sons' teams had historic soccer seasons this fall. Paul's high school team lost only twice all season and made it to the state quarterfinals, going several rounds farther than any soccer team had gone previously in school history. The core of the team is juniors, including Paul, so they have a good shot at success next year as well. I got to watch quite a few games before entering the hospital, and then several more on video thanks to a team parent.

Jake's Haverford team lost their first 4 conference games but won the remaining 5, making the conference tournament for the first time in the conference's 11-year history. (Fun trivia: Haverford is the oldest college soccer program in the country.) Tonight they won their first-round game, putting them into the semifinals on Friday. It's been a steady climb for Jake and the other seniors, who as freshman joined a team that had not won a conference game in years. I have been able to watch a few of Jake's games this fall, through poor quality live video feeds.

As for me, I'm walking 30 to 60 minutes a day, up and down the hall. There is a treadmill, but until I'm up to running, I'd rather really walk. It's hot enough in the double gown I have to wear, and when I walk the hall I get a slight cooling effect from moving through the air, and I don't have to wear gloves as I do on the treadmill.

Given my current training, I have amended my goal of actually running a 5K this fall. Instead, my goal is to complete a 5K, walking the whole way if that's what it takes. As long as I continue to be able to walk for 60 minutes straight, this seems realistic.

Full Speed Ahead

On Tuesday, I had my Day 12 bone marrow biopsy. (Twelve days from the start of chemo.) On Wednesday, we had the preliminary results we wanted — an empty marrow. On Thursday, we got insurance approval to move ahead with the transplant. My sister will fly out on Sunday and start the health screening process on Monday.

This timetable is shorter than the one I followed this winter. I think one reason is that I have so far avoided the opportunistic infections that added so much excitement the last time: conjunctivitis, sinus infection, pneumonia, fungal gum infection...

Come for the Chemo, Stay for the Food

Ok, it's not that good. But the improvement in the food offerings since I was here last winter are remarkable.

There is a full-page add-on to the menu — the Health and Wellness page — loaded with whole grains, legumes, baked fish, and other healthy additions to the previous menu.

There is an after-hours menu, in recognition that patients don't always get to, or want to, order food between 7 a.m. and 8 p.m. We sometimes have procedures that take us away from our rooms at inconvenient times, or we might feel nauseous in the early evening.

And there are food service ambassadors who stop by every room at least once a day to ask about the food and how you're eating.

A few days into my stay, after hearing that I had little appetite, my food service visitor told me about an off-menu item that a lot of patients enjoy: homemade ginger ale, which is a small bottle of Perrier and a cup of homemade ginger syrup, so you can mix it to the strength you want. Ginger is a traditional appetite aid. The syrup is heavy on the ginger and light on the sugar, so it makes a great drink if you love ginger (which I always do) and if sugar turns you off (which it currently does). The chef also makes homemade candied ginger, which is OK but not as good as the Reed's Crystallized Ginger that my brother Karl brought me.

It is a shame that I can't really enjoy much of the new menu, since it contains so much that I was craving when I was here before. For now, there is very little that appeals to me from either the new or the old menu. The only items I actually enjoy are Cream of Wheat and grits, with a little bit of brown sugar. I force myself to eat other things — baked fish, fruit, hard-boiled eggs, hummus with veggies — because I know I need to eat a variety of foods for my own good.

The hospital does offer a couple of nutrition drinks for people who can't bring themselves to eat. One is Ensure, a protein and calorie shake available in chocolate and vanilla. The other is a Gatorade-like drink, also loaded with protein and calories. Both are very sweet, perhaps acceptably so under normal circumstances but nauseatingly so for me right now. So I had better keep putting away the bland proteins and calories I can tolerate, because I can't imagine keeping either of those drinks down.

Most of the food service improvements started a little over a month ago, when the hospital hired a new chef. What excellent timing on my part, waiting for the food service to turn around before I returned.

The Same, But Different

Since I'm back in the same hospital being treated for the same disease as I was nine months ago, a lot is obviously the same. The IV pole, the quiet grunting and occasional chirping of the pump, the semi-regular interruptions for vitals or blood or medications or consultation, Rectal Swab Tuesdays, the expected but unpredictable fevers and chills and sweats.

Not surprisingly, there are a lot of the same staff. Their usual greeting is something like, "It is so nice to see you again." I know what they mean, and I'm glad they're taking care of me because they are really good, but I can't help thinking, you know what would be even nicer? If I weren't here!

There are also a lot of differences. I have already mentioned the improved food service, where the changes are so large they deserve their own post.

The treatment plan is different. Last time, I got a cocktail of three drugs over seven days. This time, I got two drugs on day one, three days off, with a repeat yesterday. One of the drugs is the same as last time, but at a much higher dose. The new one is bright blue, and it's pretty disturbing to see something that color running into your body. It is also disturbing to have your pee turn blue, but I was prepared for that.

Another different side effect, and I'm not sure which chemical is responsible, is the onset of rigors about an hour after the infusions are done. In the span of 10 minutes, I go from having a slight chill to mild shivering to intense full-body shaking. The first time it happened, I was pretty freaked out, but it stopped as soon as they gave me some Tylenol. Last night, I could tell it was coming. Since I was already taking Tylenol, they gave me Demerol which stopped the shaking in about 20 minutes.

My fitness level is different. In January I had recently run a half marathon and had been lifting weights regularly, so I was in very good shape for someone my age. While I was able to build up my running over the summer and had started some strength work, I was still a long way from getting back to my January fitness level. And with the late August round of chemo, I was reduced to walking. So, I come in to this round less fit than I was the first time, though still relatively fit compared to the population at large.

My marrow is different. My understanding is that in January, 50% of the blood cells in my marrow were blasts. That's a lot of leukemia. This time, 20% of the blood cells in my marrow are blasts, and half of the marrow cells carry the XX chromosome, which means they came from my sister. 50% blasts versus 20% works in my favor, because there is less leukemia to kill than before. I thought that having half of the cells by from my sister would also be helpful, but it doesn't matter. Before the transplant, we kill them all and start from a clean slate.

My perspective is different. The first time through, it didn't really occur to me that there might be a second time through. Kill the leukemia, do the transplant, recover — sure, there could be (and were) some painful or uncomfortable bumps along the road, but it was still a story with a relatively simple arc. This time, I am aware that this is the second of X attempts to beat the leukemia. I'm hoping that when we get through all the wrangling, we find out that X=2. But I know it might be 3. Or more. For now, 2 is my new favorite number.

Good News, Bad News: The Sequel

The good news is, I know how to do this.
The bad news is, once was enough.
The worse news is, once was not enough.

The good news is, I'm back under the direct daily care of one of the best AML teams in country.
The bad news is, I need to be back under the direct daily care of one of the best AML teams in country.

The good news is, the menu has a new insert including everything I asked for during my previous stay.

The bad news is, making fun of the food was one of favorite passtimes.

The good news is, I know how to do this.
(Also, there's a treadmill.)

= = =

We don't have final results from the biopsy yet, but we have enough information to know that, without a change of plan, the leukemia would eventually win. Unlike the initial diagnosis, this was not a complete shock. We knew this was a possible, maybe even probable, explanation for the behavior of my blood counts. It is still hard news to hear.

Anyway, I am back in Chicago for a different mix of chemo drugs than we used before. As was the case nine months ago, the first goal is to knock down the leukemia. Depending on how that goes, there are several possible paths: another round of chemo, another stem cell transplant, a donor lymphocyte infusion...

With so many possible paths, I don't have a handle on how long I'm going to be here. I know the plan for tomorrow — start the chemo. Four days later, end the chemo. Then some waiting.

There is a lot that is familiar, which isn't surprising considering I spent nine weeks here at the beginning of the year. Coincidentally, my first nurse this time was my first nurse the last time. I remember many of the other nurses and staff on the floor. As before, a good night's sleep is a fantasy.

• 12:00 a.m. Admitting doctor makes final decisions about evening medications.
• 1:15 a.m. I get stuck for a blood draw.
• 1:20 a.m. I ask the nurse about progress on the evening medications. I get one of them.
• 3:20 a.m. Another medication.
• 4:15 a.m. Vitals.
• 5:25 a.m. I get stuck for another blood draw. Luckily, my nurse is passing by the room and persuades the phlebotomist in my room to perform an additional draw scheduled for 6:00 a.m., saving me another stick within the hour.
• 7:00 a.m. More meds.

In addition to the familiar aspects, good and bad, there are some welcome changes.

The first difference I noticed after getting admitted last night was the menu. There is the same menu I ordered from at the beginning of the year, but stapled into it is a full page Health & Wellness menu. (The original menu is, I guess, for people who are hospitalized but unconcerned with health and wellness.)

For me, the highlights of this new page are whole wheat pancakes, whole wheat waffles, fruit toppings for both; hummus and veggies; black bean soup; black bean burger; chicken, turkey, or tofu wraps; grilled portabella mushroom; whole wheat pasta; veggie or tofu stir fry; whole wheat pizza; veggie quesadillas on whole wheat tortillas; black beans, brown rice, sweet potato fries.

I brought some supplemental food based on my experience last winter, but I'm not going to have to rely on it that much. Tonight I had the hummus and veggie appetizer, whole wheat pasta with marinara sauce and grilled chicken, and sweet potato fries. It was all good.

Today I also had several transportations. No long waits, no getting left alone in halls. What am I going to write about?

Nine-Month Anniversary

Nine months ago today, on January 10, I received my diagnosis of acute myeloid leukemia.

To celebrate the anniversary, I was back in the same office, having a bone marrow biopsy and then a consultation with my doctor.

We won't have a clear direction until later this week (Wednesday or Thursday), when my biopsy results are in and various teams have met to discuss them. My doctor suspects, based on blood tests, that I still have leukemia, and that the chemo treatment I had six weeks ago was not sufficiently poisonous. The biopsy will provide a lot of useful information: how healthy is my marrow, how well is the graft doing, how aggressive is the remaining leukemia.

One scenario is that I go back to Chicago soon (maybe Friday) for a different kind of chemo, possibly followed by a second transplant. (Sometimes it takes several transplants to put leukemia into remission.) A variation of that scenario is that we do the chemo, it (finally) knocks out the leukemia, and my counts recover on their own, without a transplant. Or the biopsy might send us in another direction entirely.

So, I don't know exactly what's next, but I'm mentally prepared to reopen my satellite office in Chicago. If I do have to go back, I'll be better prepared this time — I know what food to bring, and my iPad and Kindle are loaded.

Happy anniversary!