Rash

Counts
Platelets: 8 (so I got a platelet transfusion)
Hemoglobin: 7.8 (so, as expected, I also got a blood transfusion today)
Neutrophils: still too few to count
Monocytes: 4%, same as the day before


= = =


Mara began her local participation in the transplant process. She met with the doctor who will manage her donation, and she took some tests: blood tests, EKG, chest x-ray. There will be more tests tomorrow, which is also Mara's birthday. Happy Birthday, Mara! (Hint: mara-seeley@comcast.net)

To take advantage of having both sisters together,
we had an early birthday with chocolate cupcakes.
Don't be fooled by her youthful appearance and
the number of candles. Mara is older than three.

Mara spent a good part of the afternoon at the Ronald McDonald House. The house is a place for families of child patients to stay close to their children, but guests of any patient in any University of Chicago hospital are welcome to use the daytime facilities -- laundry, shower, kitchen, lounge. It's a wonderful place full of kind and helpful staff, and my dad and both sisters have all benefited from its offerings. They have all been so impressed that they want to put this Ronald McDonald House on their charity giving list.


Another benefit available to guests of patients is access to the campus athletic center for a discounted daily fee. For my sisters, this translates mainly into pool access, but they could use weights or the track or other fitness equipment if they wanted.


= = =


My medical excitement of the day is the appearance of a minor rash on my back. The daily posse wasn't sure what it was, so they requested a visit by a dermatologist, who also wasn't sure what it was, so she returned with a more experienced dermatologist. The older doctor thinks he knows what it is -- a harmless, non-communicable virus -- and they took a skin biopsy (nearly painless) for a test. I will get preliminary results tomorrow.

Transfusion of Sisterly Love

Counts
Platelets: 14 (after transfusion yesterday)
Hemoglobin: 8.1 (probably getting a transfusion tomorrow)
Neutrophils: too few to count
Monocytes: 4%, up from 1% the day before

This last number is a whiff of a glimmer of a hint of the start of the rebound. Maybe tomorrow I'll be up to a glimmer of a hint.

= = =

My sister Lauren has been visiting since Sunday evening, and she's leaving tomorrow. My sister Mara arrived this afternoon. Mara got a ride to the hospital from the airport from my cousin Jessica. Thanks, Jess!

Mara, Lauren, and Jessica

Mara brought a few treats, including this essential accessory
for my pirate cap.

Also, lots of chocolate, including a tiny chocolate mouse,
perched on my hand.

Waiting...

Nothing new on the blood counts... platelets at 10 this morning, so I got more platelets; hemoglobin at 8.6, so I didn't get red blood.

My sister Lauren started her visit last night. The staff had no trouble identifying her as my sister. Today, Lauren freed me from the confines of the hospital menu and brought me a black bean burger and a pecan roll from the Au Bon Pain downstairs. The pecan roll was followed shortly by a food coma.

Tomorrow, both Lauren and Mara will be in town. It's an infusion of sisters! I have it on good authority that Mara is bringing chocolate, along with her awesome stem cells.

Waiting

Early every morning, I have some blood drawn. If I'm lucky, this blood draw coincides with the 4:00 a.m. vitals check. The main information we're looking at is my blood counts. The chemotherapy knocked out the cells in the bone marrow that create new blood cells. Until I am able to create new cells in sufficient numbers, my counts will keep falling as older blood cells die.

When my platelet count falls below 10, I get a platelet transfusion. When my hemoglobin falls below 8, I get a red blood transfusion. My white blood cell count has been close to zero for weeks, but you generally don't transfuse white blood cells. (I think that's because they have such short life-spans that it's not worthwhile.)

At some point, my marrow will start generating blood cells. The attending physician who was just in my room this morning expects this to happen around the end of this week. If that's the case, I could be heading home as soon as next weekend, or maybe a little after. Then I would continue to recover at home for a week or two before coming back here for the stem cell transplant. At this point, it's just a waiting game -- blood draw in the early morning, report later in the morning, repeat the next day.

Speaking of transplants, sister Mara is coming into town this Tuesday to begin her part in this adventure. She'll undergo some tests on Wednesday. Assuming those tests go well, she will start Neupogen injections to boost the number of stem cells in her blood, so that they can be harvested for me. That harvest is scheduled for February 21 or 22. Mara can expect some or all of the following side effects from taking Neupogen:

• redness, swelling, bruising, itching or a lump in the place where the medication was injected
• bone, joint, or muscle pain
• headache
• nosebleeds

Thanks, Mara!

Care Package

One aspect of this illness that chokes me up is all the offers of support, both for me and for my family. Prayers, wishes, meals, cards, calls, books, e-mails... It's beyond heartwarming.

Jan delivered a large bag of goodies from my colleagues at Human Kinetics.

The pirate hat is popular with the staff on the corridor.

Curse you, Red Baron!

I wore this hat on my trip to the fifth floor of an adjacent hospital. It was a long trip, so the hat got a lot of exposure and a lot of smiles.

Reading material... The Avengers, The Nation, and MacLife. Who do they think I am?

Scrabble Flash is great, although Paul consistently outscores me.

Not pictured -- cards, V-Jerky, gas cards to pay for Jan's trips up to Chicago, restaurant gift certificates to simplify some dinners, iTunes card...

Thank you!

SnOMGeddon

Hospital operations have been pared down to essential staff. The nurses, doctors, techs, and others whose shifts were ending around 8:00 last night got to work extra-long shifts and then spend the night. The outpatient clinic is closed. My lunch, which normally I could expect to receive within 45 minutes of ordering, is coming up on 90 minutes.

At the storm's daytime snowfall peak, visibility was less than half a block.

There were times last night when the building was creaking, and the lights flickered from time to time. Fortunately, we never had to switch to backup power.

Not much to report on the medical front. I'm in the chemo recovery phase. Platelets need replenishing every couple of days. Hemoglobin is holding steady, so I haven't had a red blood transfusion in a while. (And I ran 3 miles yesterday, easily.) Neutrophils are close to zero. The neutrophils are the limiting factor with respect to leaving the hospital. Without them, I am close to defenseless against bacterial infection. Sometime in the next two or three weeks, the doctors expect them to rebound sufficiently. What happens after that is still unclear, in particular how quickly we move to the transplant phase. I hope to learn more this week, when the hospital and clinic are back up and running at full strength and can answer questions.

Update: As was true for many, the storm interfered with my workout plans. Stranded nurses used the lounge with the treadmill as a dormitory, so I had to walk the corridor instead. 35 lengths per mile. 3 miles. Running on a treadmill never looked so good.

Nurses

A lot of you already know this, and I suspected that it was true, but this has been my first opportunity to see firsthand that nurses are fantastic people. The nurses on this unit (and my previous one) are on 12-hour shifts, so I have had quite a few in my three weeks here. Young and old, male and female, from all over the world -- each, in his or her own way, friendly, caring, reassuring. Despite the occasionally dignity-robbing details of hospital life -- Tuesdays are Fecal Swab Day! -- they are good at maintaining patient dignity.

Nurses have different relationships with the hospital. There are staff nurses permanently affiliated with the hospital, traveling nurses who affiliate with a hospital for some period of time and then move on to another, and agency nurses who fill nursing gaps as needed. Staff nurses have priority over traveling nurses, who have priority over agency nurses, so the night shift has a higher proportion of traveling and agency nurses.

Today, as the Blizzard of the Century shuts down Chicago, the nurses are preparing to be hospital-bound for a day or two or three, working even longer shifts to make up for the staff that can't make it to the hospital. And they seem pretty upbeat about it -- this is what has to be done to take care of patients, so that's what they'll do. (I can hear the wind howling outside, and the building is creaking under the force of the wind.)

= = =

The level of nursing care has been so good that the one exception took me by surprise. She was an older nurse, a new face (to me), and she came into my room as the evening shift was starting, to introduce herself. Unlike any of the other nurses, she was wearing a yellow isolation gown. I knew that some patients were so vulnerable that anyone entering their rooms needed to wear these gowns, and my first thought was that I had entered that category. No, she reassured me, she just liked to be extra careful. That works for me!

A little later, she came in to disconnect me from Ivy so that I could take a shower. (We are pretty much hooked up 24/7 again, since I started a course of antibiotics last week on Fever/Vomit Day.) Besides disconnecting, preparing for a shower also involves putting the three lumens of my Hickman Triple Lumen into a plastic bag and then taping the bag over the dressing that covers the entry point into my chest. She didn't seem clear on the process, but I walked her through it. When she was done, I realized she hadn't worn gloves, and I had a feeling that nurses always wore gloves when working with my IV lines. Maybe it wasn't as important when disconnecting...

The Hickman Triple Lumen, bagged for a shower.

After my shower, I called her back to reconnect me. I was relieved to see she had gloves and wipes. That relief was short-lived. She had trouble opening the little packets containing the wipes, didn't fully unfold the wipes, dropped one of the wipes... I made her redo some of the disinfecting of the connectors, because the first pass seemed like going through the motions. I noticed that she was wearing large gloves even though she had small hands. This meant she had long flaps dangling off the ends of her fingers, which I thought might explain why she was having trouble holding things. I told her that if she needed smaller gloves, there were three boxes, in different sizes, mounted right inside my door. She explained that she wore the large gloves because her rheumatoid arthritis was so bad that she couldn't put on the gloves that fit. Arthritis! That explained a lot. Her hands were preventing her from doing her job, and I knew she (anyone) would have a hard time recognizing and accepting that. 

As soon as she left, I hit the call button on my multipurpose remote control -- call, light, TV on/off, volume, channel up/down, and caption and radio buttons that remain mysterious to me. "How can I help you?" "May I speak with the charge nurse?"

The charge nurse came right in. I recounted my experience so far with the nurse who had been assigned to me, how inconsistent that experience had been with the rest of my nursing care, and how uncomfortable it made me. I noticed that my voice was shaking. "Would you be more comfortable if someone else took care of you for the rest of the night?" Absolutely. (Though I'm nervous for any other patients in her care.) The charge nurse said she would take over my care for the night and talk with my (now) ex-nurse, who was an agency nurse and therefore not known to her. I learned the next day that this nurse will not be back.

I want to thank all the friends who have stressed the importance of looking out for yourself and dealing with anything that makes you uncomfortable about your care, as well as making sure I knew that my greatest risk right now is infection due to faulty care. Without that priming, I'm not sure I would have called out my nurse. Ideally, I would have stopped her the instant I saw her having trouble with her fine motor skills, but it took me a little while to process what was going on and stir myself to action. If there's a next time, I think I'll be ready.