RUminations

When does a writer become a Writer?

2008-06-18T18:07:00.005-04:00

I never considered myself a Writer, although I always received positive feedback in school about my writing. I crafted many well-written memos and press releases during my work life and even wrote entire procedure manuals that were clear enough to be followed by teenaged employees. Despite all my written output, at no point would I ever have identified myself as a Writer.

In a meeting a few days ago with a group of other Writers, this topic of writers' identity came up. Many people are interested in writing and may even have dabbled in the occasional short story or essay, but would never consider "writer" as part of their identities. What gives a person permission to cross over to that hallowed territory?

For me, it was writing classes. I had an idea for a novel for at least 10 years. Someday, I thought, I would get around to writing it. At some point I realized that "someday" might never come. I needed to take action and at least see if I could do it. I signed up for a fiction writing class in Charlottesville and began working on my first chapter. After that class was over, I signed up for another, then another. When the classes I had been taking were no longer being offered, I contacted other people I had met in the process and invited them to form a critique group with me. That group still meets after three years.

At what point did I start to consider myself a Writer? Probably after the second or third class. Having created pages of a manuscript forced me to take my project seriously. I had set out to write a particular story, and somewhere along the way became a Writer.

If you live in the Charlottesville area and have ever thought about writing fiction, I highly recommend taking a beginning writing class. No coincidence, but I happen to be affiliated with a new non-profit in town that is offering just such a class starting June 24. Check out Gina Welch's Beginning Fiction Writing class at WriterHouse.

Shooting in Schools

2007-10-24T10:46:00.001-04:00

My first reaction to this headline in a 1907 issue of the Topeka State Journal was "the more things change, the more they stay the same." Who knew there was such a long history to such a modern problem? Then I read the entire article.

Click on the image of the article for a legible view.

Dispatches from TransplantLand: Day +15 (Hallelujah and Happy New Year)

2007-09-13T11:04:00.001-04:00

Every Thursday morning at 9:30 is the caregiver support group meeting in the family lounge. I've gone twice already, and I plan to go again today, even though this episode in my life is probably coming to an end. I'm not sure why I go to the meeting, as I don't expect to get emotional support from a group of strangers and a social worker, but I believe in taking advantage of every opportunity offered, so I go. Besides, they have fruit and pastries. The last two weeks I haven't eaten anything, since I've always just had breakfast, but today I eat a cinnamon roll to celebrate day 15.

Many topics are discussed at these meetings. I usually sit back at the beginning and let everyone else talk. Today there are about 5 people besides the nurse who is running the meeting. Then there is an opening, so I bring up a topic that has been on my mind. I point out that in all the patient materials, the discussions with nurses and PAs, even the group meetings, there has been no mention of the emotional and psychological aftereffects of this process. I say that my sister's transplant process has gone relatively smoothly, but that I have urged her in advance to get professional help with what I assume will be something like Post Traumatic Stress Disorder (PTSD). OK, that might be a bit extreme, but it's been a long, stressful experience, and I know I'm expecting to have some aftereffects. I can't understand why there is such a gaping hole in the patient communications. Actually, I can understand, because I've felt from the beginning that patient communications is a weakness of the program, but that topic is dealt with elsewhere. I expect to leave today, and I expect that my first feeling will be that I'm able to exhale after holding my breath for 3 weeks. I want to emphasize that Beth's transplant went as well as could ever be expected, but even so, there was the feeling of being on-call 24/7 and the anxiety that something life-threatening could happen at any moment. There was also the emotional impact of walking into that clinic every day and seeing patients who were so much worse off. It was impossible to keep this thought out of my head: some of these people might not make it. And I was going to go home, back to my life, and not living with the patient through the 3-6 month recovery period. I couldn't imagine what it would be like to be one of the spouses (which were the majority of the caregivers I met) going through the transplant process and then never getting to go off duty. The ABMT staff needs to help the patient understand that this is more than just a physical process.

The nurse running the meeting acknowledged that this was an important issue. In fact, she had recently been to a conference about the psychosocial aspects of cancer survival (or something along these lines--I didn't write it down) and it was a particular interest of hers. She acknowledged that a lot of cancer survivors and even caregivers experience depression months after treatments are over. She promised to write up some material for the patient binder about these issues. I offered to proofread, critique, or whatever would be helpful when she put some material together and gave her my email address. I hope I can help make this a better experience for patients and caregivers, even in a small way.

After the meeting, I went back to the recliner in the clinic where Beth was waiting for her catheter to be removed. Although she had had a low-grade fever the night before (a little over 100), and her white count had dropped a slight amount, she was going to be discharged. We should be out of there around noon. A nurse went over the discharge instructions with us (which, by the way, varied from the written instructions in the binder, and also some things other nurses had said the day before). Then the PA arrived and said it was time to take out the catheter. He asked if I wanted to come and watch. Hmmm...that hadn't actually been on my agenda. He said mostly the caregivers do come and watch, so, I had to succumb to peer pressure. You know me, always going along with the crowd. It occurred to me much later that this was a procedure that was done in a closed examination room away from the main treatment area, so it was probably a protection for the practitioner against any sort of accusations of impropriety.

Removing the catheter consisted of clipping the sutures that held the tubes in place and then counting to three, inhaling and exhaling (the patient, not me) and then the PA pulling the tube out of her chest. Beth described the experience as a very intense stinging sensation, but only lasting a second. Then the PA kept pressure against the wound for a minute or so, bandaged it up, and gave us a handful of bandaids for later. These things apparently heal up extremely quickly. Beth wanted to keep the tube to take photos for her blog. The PA put them in a baggie and instructed her to use gloves to take it out and soak it in bleach before touching them. She promised to be careful, and I know she will because she's really been conscious of bacteria since being immunocompromised. With that, we were on our way.

Saying goodbye to the nurses and other staff was somewhat bittersweet. Most of the other patients were finished for the day and had gone back to their apartments. It really reminded me of going home from summer camp. We had spent a lot of time in this place, with these people, and it had become very familiar. It was weird to think about not coming back here tomorrow, as much as I was looking forward to going home. Of course, there are no goodbye hugs in TransplantLand. Too many germs.

On the way out of the clinic we stopped to make her 4-week follow-up appointment with the doctor. They'll do tests to make sure that the chemo has definitely killed off the cancer. That's when we'll know how successful the transplant was.

Back at the apartment, I went for one last swim before eating lunch and finishing packing the car. A friend of Beth's came to pick her up and helped me load my car and then we drove off in our separate directions.

I had mentioned to Beth that a few days earlier that Thursday would be Rosh Hashanah, the Jewish New Year. I thought it was a symbolic day to be released from the hospital with a new immune system, to be starting a new phase of life, hopefully in complete remission from the myeloma.

Dispatches from TransplantLand: Day +14 (Hair Container)

2007-09-12T16:58:00.001-04:00

When my husband and son visited over Labor Day weekend, my son and I trekked from the ABMT Clinic through Duke Hospital over to the Bryan Center to buy him some new Duke t-shirts. He happens to be a big Duke basketball fan. Beth requested something with "Duke LaCrosse" on it, not because she's a big LaCrosse fan, nor a fan of racist alcoholic college athletes gone wild, but I think as a protest against the out-of-control prosecutor. Maybe I'm projecting that onto her. Anyway, we got her a shirt and a baseball hat, knowing that her hair would begin to shed about two weeks after the chemo.

Last Saturday, while my other sister was here, she was designated the chemo barber. When the hair starts to evacuate the premises, it's a lot less messy if you've cut it very short in advance. So, my other sister took the electric clippers to Beth's hair. I was afraid to go near it, because I have no experience with said clippers and because chemo makes one's platelet count go down and I was terrified of accidentally drawing blood. Other Sister was braver than I, so we all went out on the patio and she clipped away.

Beth has been wearing the Duke LaCrosse hat most of the time since then. Not having had any experience with this kind of hair loss, I didn't realize that it's not so much a hat as a hair container. It keeps the short fluff from drifting off on the breeze like seeds from an oversized dandelion. When she takes it off there is a soft nest of hair in the crown. She says the hair follicles are somewhat painful at this stage. The small bits of hair that cling to the scalp are irritated when she lies on a pillow or brushes against anything. The hat helps with this too, because it keeps the hairs immobilized. We considered the possibility of getting her a do-rag to sleep in, but most of her head is already bald at this point, except in the back where there is a leopard-like pattern made by the remaining tufts. It will probably all be gone in a couple of days. This is her second experience with hair loss, as she had cytoxin before harvesting a previous batch of stem cells that was never used.

I dropped her off at the clinic this morning and went to The Blue Coffee Cafe downtown with a friend from college days. He's been going through a lot lately, including his mother's terminal esophageal cancer. While we were talking Beth phoned and said that the Physician's Assistant told her she would be discharged tomorrow! Apparently it might have been possible for us to leave today, but we would not have had time to pack and prepare to leave.

Beth's WBC has dropped to 3.5, but that was to be expected because she hasn't had Neupogen shots for the past two days. The platelets have increased and all the other labs were good. I picked her up and then she realized that she was supposed to get a potassium pill at the clinic but somebody forgot to give it to her. We drove back a couple of hours later to retrieve it, after my swim and her Reiki.

My husband and son sent Beth a card in the mail and it arrived today. Good thing they didn't wait any longer or we would have missed it. Here's a hint for caregivers: give the mailing address where you're going to be to the patient's friends and relatives as soon as you know it. Cards and letters are a nice treat, especially in this electronic age.

Now we have to start packing!

Dispatches from TransplantLand: Day +13 (BItter with the Sweet)

2007-09-11T18:12:00.002-04:00

Note: Somehow an incomplete version of this post ended up being published, and has now been deleted. This is the correct version of Day 13

Today Beth's white count was up to 7.0, which is well within normal range. We waited around a pretty long time for the results. The Nurse Practitioner finally got around to making her "visit" to us, to say that Beth would not receive a shot of Neupogen today. The clock starts ticking. She then proceeded to tell us that if things continued going well, maybe we'd have a "break" from daily clinic appointments over the weekend. The weekend? THE WEEKEND? We had been told by the Physician's Assistant, who had a day off, that an absolute neutrophil count over 500 and two days without Neupogen or any blood products would be the criteria for discharge. By our calculations, that would be Thursday. When we questioned her about her timetable, she backed off a bit, saying leaving earlier than the weekend was a "possibility." The only thing we can figure is that she's being deliberately pessimistic in order to keep us from getting our hopes up. I can understand that, however, it is necessary for us to have some realistic information in order to make plans. Beth's house is being cleaned, dog boarded, she has to arrange a ride home, etc. People need to know what's going on. For the meantime, we are basing everything on our Thursday-Friday scenario. We think it will be Thursday, Friday at the latest, and we have contingencies for either day.

The clinic has two treatment rooms--A and B. I decided to walk around the two rooms and assess the capacity. Room B has 7 free-standing chairs around the perimeter and 8 small separate rooms with doors. Room A has roughly the same, only maybe fewer separate rooms. That leads me to guess they can accommodate somewhere in the neighborhood of 25-30 transplant patients at a time. There is the appearance of a futuristic assembly line--patients in vinyl recliners, most connected by tubes to intravenous solutions of various contents. Many have friends or family sitting in the small metal chairs at right angles to their recliners, peering into the screens of their laptops or talking loudly on their cell phones. Many of the patients are sleeping, or in that half-sleep drowsy state that helps them conserve their meager supply of energy.

We get to know the other patients and caregivers a little, some more than others. As I was walking through the two treatment rooms to do an unofficial inventory, I saw one woman that we've talked to over the past couple of weeks. Her name is Joyce and she's from Charlotte. The past few days she hasn't been doing so well. She's had trouble with her kidneys. I asked her how she was doing and she told me she was going home today, but the expression on her face wasn't happy. The transplant of her son's non-matching stem cells didn't take. She would have to go home and recover, only to travel back to Duke in about four months to try it all over again. I felt like crying, but I didn't think it would help her to see how sad I was for her. She didn't know why the plan was to use her son's stem cells again, when it hadn't worked the first time, and it didn't make sense to me either. I wondered if it had to do with the fact that she is African American and that minorities are underrepresented in the marrow and stem cell donor banks. Maybe there just wasn't a better match to be had in the sparse listings of the registry. I urged her and her husband to go back home and talk to everybody they know about getting their blood tested to see if they might match with somebody in need. Maybe they could encourage their church or other community groups to have a drive to get more people into the registries. It could be that in 5 or 10 years there will be some way to genetically engineer stem cells so that everybody who needs a transplant will have as successful an experience as Beth has had. In the meantime, many people will need donors. Donating stem cells involves being hooked up to a machine for a few hours and having your blood circulate through it and back into your body. It's not painful and it might save somebody's life.

More information is available at the website of the National Marrow Donor Program.

Dispatches from TransplantLand: Day +12 (What the...???)

2007-09-10T18:21:00.001-04:00

Beth and I had the same reaction, simultaneously, when the Nurse Practitioner gave us the white cell count this morning. "What the...???" We looked at each other, and then the smiles broke out. The white count was a whopping 4.7--within normal range, low-normal, but still normal. After the previous day's emotional anguish, I'd almost been dreading hearing the results. Either the immune system was working away, oblivious to the external turmoil or the anger had been harnessed and directed to the highest priority task: building white blood cells. The process of engraftment was going forward. The stem cells were finding their home in the bone marrow and setting up their production lines.

Just a few minutes before, I had been standing outside on the sidewalk in front of the clinic, making my series of phone calls. First I had to evict the housesitter and make some handover arrangements. There were a couple of other logistics phone calls, and notifying my other sister that it looked like we could be pretty close to discharge, so she could make sure things were on track for Beth's house to be ready. Letting everybody involved know what was going on and making sure that everybody was on the same page took probably 45 minutes. On my way back into Treatment Room B I stopped at the social workers' office to let her know the broad outline of what had gone on, just in case it was going to have any medical ramifications, also to see if she could talk to Beth and give an outside perspective.

Back in Treatment Room B, the nurse waited for instructions from higher up. Should they still administer the Neupogen since the white count had gone up so far? Was it possible that Beth could be discharged on Day 14, the day we had been told was the earliest anyone had ever been discharged? While we waited for word, Beth was given more potassium orally. These pills are gigantic. Although her potassium was in normal range, their protocol is to keep it high.

Then the nurse came back with the syringe. Since it was the first day of a normal white count, she would have another shot of Neupogen. The two-day Neupogen-free clock wouldn't start until the next day. The first possible discharge day would be Thursday, Day 15, assuming Tuesday's lab results were good.

I had been too busy phoning and making arrangements to swim during the morning. After we got back to the apartment and had lunch we spent some time with a DVD I had gotten from Netflix called "Sold Separately: Classic Kids Commercials". It was pretty entertaining. The production values on some of those old commercials are amazingly primitive. You can't imagine that any kids today would beg their parents for a toy based on seeing one of these classic gems. They are very wordy and seem to go on forever. The slogans are unbelievably corny. Some of the ads contained prices for the toys, which made us curious about what the equivalent prices would be today. Using the Federal Reserve Bank of Minneapolis Consumer Price Index Calculator, we discovered that one large rideable truck that was advertised at $29 in about 1965 (our estimate of the year) would cost around $189 now. Looking at that truck, I'd be surprised if it would really cost more than about $40 at WalMart. That's globalization for you. Toys seem to have gotten much cheaper over the years, probably because of the manufacturing being shipped offshore. This prompted a philosophical conversation about consumerism and things being too cheap, which I won't rehash here.

We both decided to take naps in the late afternoon, since the day before had been so stressful. I was well-rested when I finally got to the exercise room to try out the elliptical machine, listening to the beginning of "Water for Elephants" by Sara Gruen on my iPod.

Dispatches from TransplantLand: Day +11 (An UPward Trend--Mostly)

2007-09-10T13:40:00.001-04:00

Beth's white count more than tripled between yesterday and today (note--I'm posting this a day late, so when you read this pretend it's Sunday) from .3 to 1.3. This is a sizable jump, and we're very happy about it, but we have to keep in mind that one requirement for being discharged is to have the total neutrophil count be at least 1000 without having had any Neupogen shots for at least two days. So far the increases in the white count have been helped along by this growth factor. Once the count gets up to the point where she can stop having the shots, then the clock has to tick two days without it and without any transfusion of blood products. We're crossing our fingers.

While we waited for one thing or another in the clinic, I kept looking at the clock and thinking I should go swim my laps, but I was just so tired and I really hate swimming in the morning. Beth needed an IV of potassium, which would be almost another hour, just enough time for me to drive the 12 minutes back to the apartment, swim for 30 minutes, shower and change and get back, but I just didn't have it in me. I told myself I'd get to it later. While we sat there, another patient's husband was chatting loudly on the phone, as they all do, and telling his friend that they were almost ready to leave for the day, but had to wait for her shot of Neutrogena. As always, I was grateful for something to laugh about.

As it turned out, that laugh would have to carry me through the day, as things were about to get heavier. Beth found out from a friend of hers that the housesitter/petsitter had gone AWOL. She is extremely attached to her cat and dog, and had stressed to him at the outset that he needed to commit to staying there the entire time. There is a history to this, part of which is that when her last dog disappeared, never to reappear, the same person, a family member, was also petsitting. I had wondered at the outset why she felt confident about these arrangements, but it wasn't really my issue.

Of course, when you're a primary caregiver, anything can become your issue. We decided that the neighbors could take care of the cat and the dog would need to be taken to a kennel, so Beth got on the phone and made the arrangements. She was very agitated throughout this process, and all I could do was try to keep her focused on the logistics. Here's a hint from the front lines: don't take any chances with the pet thing. I'm not a pet person, but I know that people who are get very worried about their pets. When you are recovering from a stem cell transplant, or helping someone recover from a stem cell transplant, the last things you want to have to worry about are Fido and Fluffy. Make sure you have 100% reliable accommodations for the pets before you embark on this journey--preferably a kennel or other professional care. The bonus is that they can also bathe the animal before you pick it up, so your home environment will be cleaner.

Luckily we have another sister who lives in the same town as Beth, so she could help with some of the arrangements. She had also arranged to come for a visit on Sunday so I could go and hang out with a local friend of mine whom I haven't seen in a few years. When my other sister (I'll call her OS for now, since I don't know whether she wants her name in my blog) got here, we started to compare notes and realized that the pets were not the only worry. A few other strange things had happened during the tenure of said caretaker. As I said, this is nothing new. We have some unreliable, untrustworthy people in our family, and Beth has been taken advantage of in the past because she wants to trust everybody. Another hint from the front line: if you have a dysfunctional, unreliable family, try to replace it as much as possible before undergoing any intense medical procedure. You really don't need your family members upsetting you at a time like this. Beth was distraught about her pets, and about the duplicitousness of someone that she cared about. OS and I were worried about what all this was doing to her health.

By this time I was late getting to my friend's house, but she understood. I had a couple of glasses of wine and some homemade chicken soup and she helped take my mind off the madness for a few hours. She also sent some chicken soup back with me.

When I got back to the apartment later that evening, we talked about the family situation more, and got to bed later than we had been accustomed to. Those of you who know me well, hang on to your hats. I've been going to sleep before 11pm every night! This is partly because I'm exercising every day and also because we have to get up and go in to the clinic every morning.

I was very concerned about how all the family turmoil would impact on Beth's medical progress. I also realized at the end of the day that I had skipped my exercise for the first time in 12 days.

Dispatches from TransplantLand: Day +10 (There Are No Weekends in TransplantLand)

2007-09-08T13:50:00.001-04:00

Today is Saturday, but the routine is the same as it has been every day since day +2. Last Monday was a national holiday, Labor Day, but even that day we had to go to the clinic for daily blood tests. Every morning we get up, have breakfast, and drive the twelve or so minutes to the Adult Bone Marrow Transplant Clinic. A nurse takes down Beth's weight, records her vital signs, and takes vials of blood from the catheter implanted in her chest. Then begins the wait for the lab results to come back. It's usually between an hour and an hour and a half.

Sometimes I wait at the clinic; more often I use the time to run errands and/or swim laps at the apartment complex pool. The pool is fairly short, so I have to do a lot more back-and-forth than at the pool near my home. Rather than try to figure out some sort of conversion factor, I just set my water-resistant watch timer for thirty minutes and keep going until it beeps. Turns out the distance is somewhere in the vicinity of 48 lengths, although it varies from day to day, depending on how tired I am. I started my lap-swimming on day 0 and have put in my thirty minutes every single day since then. Well, except I haven't swum today yet--I was too tired this morning--but I will do it before the day is over. I'm nowhere near as diligent about daily exercise when I'm at home, but I'm determined to keep it up here. I need the exercise for my physical health, but it's also a sort of meditation for me. It enables me to think without interruption for thirty minutes. If I think of something that needs to be taken care of, it just has to wait. I'm thankful that my cell phone is not waterproof.

When Beth's lab results are back, the Nurse Practitioner or Physician Assistant will go over the numbers with her, or both of us if I'm back from my swim. Medications might be adjusted, or there might be an immediate need to order IV fluids or, like today, potassium, if those numbers aren't satisfactory. She's only had to have fluids once and potassium twice so far. Yesterday she needed an infusion of platelets. So far no whole blood or anything else. On those days when she needs an IV, we have to stay in the clinic for an extra 1-2 hours. Otherwise, we're free to go. When we go in to the clinic at 8:30 or 9:00, we might be finished around 11:00 or we may not leave until almost 2:00, like yesterday. It's completely unpredictable.

Today the labs were somewhat mixed. The white blood cell count continued up, but at a slower rate. It went from .2 to .3, instead of doubling as we had hoped. Hemoglobin was down a little, which I think is making her more tired. Platelets dropped a little, but still stayed above the level where another infusion would be needed.

I think these results were a little disappointing to Beth. She came back to the apartment and didn't eat much lunch, then went to bed. I think I'm going to have to wake her up and get her to eat and drink something soon. This is the part of being a caregiver that sucks. I hate having to force her to take care of herself. I don't mind if she wants to nap for a while and escape from the situation. I feel the same way when I'm sick. The problem is that if she doesn't eat and drink, her fluids will be low again and her electrolytes will be off and they'll have to intervene in the clinic with chemicals. She canceled her Reiki appointment, too (more about this later). Last time she wanted to cancel it I didn't let her, but today I just didn't want to push her more. We already had a discussion about some of the foods she wanted to eat this morning and it just didn't feel right to keep pushing.

Our other sister is on her way for a visit and should be arriving soon. Somebody is supposed to stay with Beth 24/7, so when she gets here I'll go take my swim then and probably go to the grocery store. I hope we can get Beth back on track a little bit. I'm not that good at being a cheerleader, but my other sister was one in high school, so maybe she'll know what to do ;-)

If you tried signing up to receive these blog posts via email and you got an error message, try again. There was a problem with the link, but I've fixed it now, so it should work.

Dispatches from TransplantLand: Day +9 (We Receive Some Excellent News)

2007-09-07T15:13:00.001-04:00

This morning's blood tests show Beth's white blood cell count headed back up. It's still extremely low, .2 (times ten to the ninth power), but for the past two days it has been less than .1 (normal range 3.2-9.8). The normal course of a stem cell transplant is to have high-dose chemotherapy, followed the next day (or two days, as in my sister's case) by the infusion of the stem cells. Over the next few days, the white blood cell count starts downward until it gets to below .1, usually around day 10. Sometime about 48-72 hours after this nadir, with the help of daily injections of Neupogen to stimulate the bone marrow's production of white blood cells, the white count should begin to go steadily up until the stem cells have engrafted. Then we can go home. I've hugely oversimplified this explanation, just to give the general idea.

Now that she has hit the bottom of the WBC curve and is headed back up, I can start to breathe a little sigh of relief. The scariest part of being a caregiver is being responsible for keeping the environment clean enough for somebody with a severely impaired immune system. First it's the handwashing. Remembering to wash my hands before I touch anything, then wash them again after I touch anything, then jump down, turn around, wash my hands again. Then there's following a neutropenic diet, washing all the food, cooking it really well, and scouring the kitchen counters every time something touches them, trying to keep all bacteria away from her. She is taking Cipro antibiotic prophylactically, but I need to be hypervigilant about cleanliness. Fortunately, hypervigilance is something I have years of experience with. Just tell me what I have to watch out for and I'm on it.

Taking care of somebody who has neutropenia is a lot like having a newborn baby in the house. I had flashbacks to boiling baby bottles and paraphernalia, washing hands constantly, keeping people with colds away, etc. I guess there is some resemblance between a newborn's undeveloped immune system and a post-chemo patient's destroyed one.

One annoyance is that the company with which Duke contracts to provide housing for outpatient transplants didn't tell us that their cleaning service is bi-weekly. That means only every OTHER week, which seems bizarre for cancer patients. I only found this out on Tuesday when I called to say that we had been here a week and not had any housekeeping services. Why provide any service at all if it's not going to be at least weekly? I'd been keeping the kitchen clean, but I hadn't done any vacuuming, nor had I cleaned bathrooms. If necessary, I certainly would have done the cleaning, but Beth called a friend who is in the cleaning business and she came on Wednesday.

We're not out of the woods yet, but so far things are right on schedule, or even a day ahead. She hasn't had any fevers or major side effects other than extreme fatigue and some mucusitis. Those should begin to diminish as her counts go up.

Thank you to everyone who has sent their good wishes and prayers. If you feel inclined to help in a more tangible way, you can make a donation to the International Myeloma Foundation to support research and patient support. Be sure to say it's in honor of Beth Morgan's Stem Cell Transplant.

Dispatches from TransplantLand: Day +8

2007-09-06T20:40:00.001-04:00

I've had a number of emails asking how things are going with my sister's stem cell transplant, so I decided to post some reports to my blog. I thought this might also give some previews for anyone who might have a gig as a caregiver for a stem cell transplant patient in their future.

My sister has Multiple Myeloma, which is a rare bone cancer. You can read more about her and her disease at her MyelomaBlog.

This is Day 8 of the transplant process, but I arrived in Durham, North Carolina on Monday August 27, which is actually 10 days ago. On Tuesday (Day -1) she had chemotherapy, then Wednesday (Day 0) and Thursday (Day +1) she had the stem cells that were previously harvested from her own blood reinfused.

On Tuesday, August 28 we moved into a 2-bedroom apartment just off highway 15-501 between Durham and Chapel Hill. Those are pictures of our apartment at the top. As Beth said, if we were 25 we'd think it was nice. All kidding aside, it's quite adequate for the two of us. There is a pool (more about that later), tennis courts, a beach volleyball court, and a playground. It's a furnished place, but we didn't know what to expect, so there are a lot of supplies that we didn't bring. Consequently, I ended up making a lot of trips to various grocery and discount stores for household items. We needed paper towels, cleaning supplies, etc. etc. I started making a list that will eventually be made available to people coming to Duke for stem cell transplants in the future. No point in everybody reinventing the wheel. I'm a "desert island" shopper, which means when I go shopping, I do it as if I'm going to be stranded for the next year. I try to anticipate everything. That means I tend to overbuy. But with household supplies I can always take them home and use them later. In the first few days I must have made an average of two shopping trips a day.

I should also mention here that our brother was supposed to come and help us move all our stuff from the motel where we spent Monday night to the apartment--a whole carload of stuff. True to form, he didn't show up at the time agreed upon. When we finally tracked him down he was noncommittal about getting there at all. We finally ended up doing the move ourselves in the 98 degree heat on the afternoon of Beth's chemotherapy. I left some of the heavier bags in my car for him to carry in when he finally arrived. All the family craziness will come in another post.

Audible Sigh

2007-06-25T10:07:00.001-04:00

I've decided to pick up the gauntlet that Elizabeth at Cville Words threw down and make a second blog entry in the space of two days. Don't get used to it, Elizabeth!

I have been subscribing to a podcast of the New Yorker for several months now. The podcast is a paid subscription from Audible.com. In general, I've been satisfied with the content, except that in every issue there is at least one glaring pronunciation error, sometimes more. I've been gritting my teeth and trying to ignore this, figuring that it was unlikely I would be able to get a complaint to the right person.

Finally, one day in a fit of avoiding doing anything productive, I decided to send an email to customer service at Audible.

Here is an excerpt:

"At least two or three times each issue (some worse than others) the reader will mangle a word. It is very very annoying. I don't know who does the production of these podcasts, but SOMEBODY needs to edit them (listen) and check the pronunciations. It is especially awful for foreign words (the movie "Volver", for example, was pronounced as if it were the last two syllables of the word "revolver". Ouch) and also names (the current issue calls the movie actor Seth Rogan something that sounds like Rojen). Especially when a word is repeated throughout an article, it gets almost physically painful. I had to stop listening to a story that took place in the Mexican state of Oaxaca (pronounced like "Waháca") when the reader kept pronouncing it something like Owáxica. Ouch. Please please impose some quality control here. If the readers don't look up the words they aren't sure of, then somebody needs to check afterward."

OK, that was grumpy. So sue me. Anyway, I was pleasantly surprised to receive a very nice reply a couple of days later from the person who produces the podcasts. Apparently the policy is to provide pronunciation help for readers on problematic words and names and also to listen for errors afterward. All well and good, I pointed out, but not thorough enough.

I was then passed on to another person at Audible who I was told would soon be taking over the production of the podcasts. I sent him a link to Merriam-Webster Online which has audio files for pronunciation of almost all the words. This would have prevented all the mistakes I had caught except for the Spanish word "Volver". Things like that make me wonder, though, about the general cultural literacy of the readers and the producers. Before the film "Volver" came out, there were interviews and reviews on NPR and probably other media that might have clued in anybody who had heard at least one.

I felt good about having perhaps contributed to a better podcast product and left it at that...until the next issue when there was a review of the Broadway play Frost/Nixon starring Frank Langella, which they pronounced with a hard "g" (like "go") instead of Lanjella, which I was able to easily confirm at the Library of Congress's web page entitle Say How? A Pronunciation Guide to Names of Public Figures.

Of course I forwarded this on to the producers but did not get a response. Now every time I listen there are instances of words that I am not sure of, because I don't have a print copy of the magazine in front of me to check it. The reason I don't just subscribe to the print magazine? I used to, but I was so buried in issues that I hadn't gotten around to reading that I had to quit. Which is worse, the annoyance of mispronunciations or the piles of paper lying around the house?

At least the responses from Audible were extremely courteous and pleasant, if they didn't completely fix the problem. That's more than I usually expect from any sort of customer service these days.

Eight Things About Me

2007-06-23T12:29:00.000-04:00

Elizabeth at Cville Words tagged me for the "8 Things About Me" meme--which I spell "Eight Things About Me" because I was taught the proper way to spell out letters in writing ;-)

The Rules are:
Each player lists 8 facts/habits about themselves.
The rules of the game are posted at the beginning before those facts/habits are listed.
At the end of the post, the player then tags 8 people and posts their names, then goes to their blogs and leaves them a comment, letting them know that they have been tagged and asking them to read your blog.

Here are my eight things:

1. I hate making lists of things. That includes "Ten favorite books", "Ten CDs to take on a desert island", "Ten best friends", etc.
2. I don't know eight other people with blogs.
3. I once had a two-week temp job at Apple Computer which required me to sit at a desk and do absolutely nothing for forty hours a week to cover somebody's vacation.
4. I spent two nights in a haunted youth hostel in Wales.
5. I helped Warren Zevon find the correct flash cube for his camera and install it. When I showed him that he was trying to use a type that had the wrong connector for his camera, his response was, "Square peg in a round hole. The story of my life."
6. I went to high school with Patty Parker, whose family owned the Parker Pen Company. One of my friends asked if Bonnie Bic also went to my school.
7. I know the Spanish words for umbrella stand and mother of pearl.
8. I once had a business producing lesbian music concerts.

Since I don't know eight other people with blogs (see #2 above), I will only tag three:
1. mxyzptlk
2. Unco's Blog
3. Reading Under the Covers

Remember that if you break the chain, you will have bad luck. One person who failed to tag other bloggers was killed by a falling meteorite. Another fell off a horse--oh, wait...

And don't forget to send one dollar to each of the previous bloggers on the list. I accept PayPal.

Is there such a thing as an anachronism editor?

2006-09-06T12:24:00.000-04:00

Because if there is, I should be one.

Here is some advice for authors: If you write a novel set in a time period in which you did not live and of which there are still survivors, for Pete's sake GET ONE OF THEM TO READ YOUR NOVEL BEFORE IT IS PUBLISHED! Is that so hard?

I just finished reading "The Little Friend" by Donna Tartt, which takes place in the early 1970s, but it is a time-warped version of the 70s where kids call each other "dude". Honestly, there are still a few of us geezers out there who were around in the 70s and we could have easily told the author to lose the "dude". This was not the only blooper in that particular book, but I lost count.

Likewise, in "The Physics of Sunset", which takes place during the Berkely fire of 1991, the author has the characters using modems to send each other email over something that suspiciously resembles the internet which was definitely not in general use at that time. I know. I lived in Silicon Valley at that time. I had a clandestine connection into a NASA computer to send email. Random folks did not have dialup email connections. So, you can have either email or the Berkeley fire, but not both, lady.

I hereby volunteer myself to be an anachronism editor for any author who cares to take me up on it. No charge. I consider myself qualified to point out anachronisms in any work of fiction set between 1968 and 1995. After that it's just too hazy. And if I'm not sure about something--I'll actually go to the trouble of looking it up!

Update: As was pointed out to me by a reader, this is also one of book reviewer Bella Stander's pet peeves. Take a look at her Blackboard of Shame

Movie: Little Miss Sunshine

2006-08-27T22:03:00.000-04:00

I recently saw "Little Miss Sunshine" with some members of my writing group. This is the kind of movie it's good to see with your writing group, because people who write fiction (at least the ones I know) understand what it's like to be different. And that is basically the theme of this movie: We're different, we're here, get used to it.

Which is a fine theme for a movie, I guess. It was very funny in places, and had one of those heartwarming family-bonding endings, but I came out of it feeling that something was missing. It wasn't until later that I could put my finger on what bothered me.

The ending was one of those self-affirming, spit-in-the-face-of-convention, movie clichés. One where a group of people gets together and decides that they will go live in their own consensus reality where beauty pageants don't exist. Hollywood (and even pseudo-indie Hollywood) has two solutions for characters who struggle with lack of acceptance by their peer groups: 1) the "cool kids" somehow come around to appreciating the "weird kid" for who he is and make him their mascot; 2)the "weird kid" decides he doesn't need the acceptance of the "cool kids" and goes off to live happily ever after in his world of denial. I guess there is the 3rd option: "Carrie".

What's wrong with this picture? It's just too Hollywood. The chances of being adopted by the "cool kids" is slim-to-none. Denial is an option, but then there is so much on a daily basis to break through your cocoon, because the world is largely run by those same people who made your life miserable in high school (e.g. George Bush and George Allen). Honestly--if your PTO meetings looked like the cast of a John Waters movie, you'd have a shot at believing it was ok to be different. But how many of us have that luxury? You bump into the tyranny of the beauty pageant everywhere you turn. The teenaged male character in "Little Miss Sunshine" had one moment of insight in a conversation with his uncle when he declared that the whole world was a beauty pageant. For me, that was the climax of the whole film. After that, it just got silly.

This film was entertaining and funny, but it took a very commercial sidestep at the end. After I had some time to think about it, I was disappointed.

My New Favorite Hobby--BookMooch

2006-08-26T21:08:00.000-04:00

I just discovered a new distraction a few days ago, thanks to the Kirkville web site, a fantastic source for Mac information. It's a book swap site called BookMooch. I have listed more than 50 used books lying around that I am willing to send to anybody who has them on their wishlist, and I have around 65 books on my own wishlist. So far I have mailed one book to another member and have received one book. Theoretically I have two more on the way and potentially another two after that, except the owners of those two have not responded to let me know whether they intend to send them or not. The only cost incurred is the outgoing postage (in the case of a standard trade paperback it's around $1.59). So, for $1.59 I have gotten rid of a book I didn't want and received a new one I did want. How can you go wrong? Please JOIN, so there will be ever more books to be matched up.

This is a similar concept to a CD swap site called LaLa, which I also joined recently. The main difference with LaLa is that they provide prepaid mailers and charge you $1.75 per CD traded. I was able to get several CDs of albums that I had on vinyl and didn't want to pay full price to get them in digital (don't talk to me about file sharing sites--I don't do those).

Besides saving money by recycling books and CDs, I find it kind of fun in a hunter-gatherer sort of way, browsing others' wishlists and inventories and seeing what I can swap.