neutropenia-related paraphenalia

I just got back from the hospital; this time, however, only to pick up my monthly supply of Neupogen. There is a law that prevents the hospital from giving me more than four weeks' medication at once, which means that every four weeks I have to call the pharmacy at the hospital and request more medicine, then go and pick it up from the friendly nurses at the Blood and Cancer Centre. It's frustrating (what, do they think I'm going to inject myself with it all at once? Sell it on the black market to cancer patients?!), but hey, my other option is to pay thousands of dollars to get it at the local chemist.

Last time I went to get the medicine, I had to pick it up from the pharmacy itself, which is somewhere deep inside the rabbit warren that is Wellington Hospital - I felt a bit like Alice. I had to push a buzzer and convince them of who I was before I was allowed inside to get the medicine. It was pushed through a hole in the wall, next to which was a bored-looking security guard. They gave me the nifty chilly bin pictured above, which has a refrigerated plastic block inside (like the type you take on picnics). Plus a large red sticker screaming REFRIGERATE. I take what pleasures I can...

Book update: one sent to press, the other at the editing stage. This time it's an academic journal (so non-fiction, as opposed to the last book), and I am enjoying it a lot more. I'm just about to finish editing the last essay, which is full of theories about globalisation and its effect on the landscape in Mexico. It makes me feel a little dumb, but I hope my enthusiasm for the topic makes up for my lack of background knowledge. And when you are editing, sometimes it is helpful to know nothing about the subject - easier to be objective about the clarity of the writing.

Neupogen report

I don't sleep well on Tuesday nights. At 8:30pm, without fail, I have my weekly injection to get my bone marrow to shake its booty and produce some neutrophils. About an hour afterward, I get achy and tired, and feel a headache coming on. I try to go to bed about 9:00pm if possible, in an attempt to get some sleep before these side effects set in. I curl up under the blankets and make myself a little flannel nest. But I am already aware of how the night will progress: I will wake up every two hours in a sweat, with a dry mouth and a pounding headache. And it can take up to half an hour to cool down again, and to rebuild the nest.

Somewhere around 3:30am, I usually give up the pretence of sleeping, and I lie awake with my thoughts until 5am, around which time I manage to doze until the alarm goes off at 6:45am. The process of getting up, dressing myself, and leaving the house before 8am, begins. I've been trying to implement ways to cope with this series of events, because each movement takes a lot of energy. I have a shower on Tuesday night, so that I don't have to stand for too long, or twist, bend, and turn around too much, when I am aching on Wednesday morning. I lay out the clothes I want to wear, cutting out the need for rambling around the house in the morning, trying to find something clean. (And this outfit usually involves cardigans, because raising my arms above my head to put on a jumper is too painful.) I pack my bag the night before, with my notes, pens, and whatever else is needed for class, except for my lunch, which I probably would have planned sometime around 4am.

Throughout the day, I keep on top of a four-hourly Nurofen schedule, starting around 7:30am. It helps to reduce the aching, which means I can walk from the bus stop to school without my body complaining. Sometimes it also helps with the crazy headaches; another side effect I've developed over the past few weeks. When I mentioned these to the specialist recently, he said that the skull is one of the richest sources of bone marrow. There's a piece of information you probably didn't know.

The housework goes on hold on Wednesdays, and washing doesn't get done until Thursday. That's okay - we both have lots of clothes. Jeremy usually cooks dinner on Wednesday nights, so I can lie on the couch and rest. Sometimes I take a bath in the evenings, with lots of bath salts and bubbles. And if I'm lucky, Jeremy gives me a shoulder massage - though, only if you can call 'the lightest touch possible' a massage. It hurts too much otherwise.

I've been on this medication for 4 and a half months now. After three months the side effects seemed to be getting better, but the last few weeks have been noticeably worse. I have, however, been getting fewer sore throats and mouth ulcers, although this week I do have two particularly vicious visitors - one on each side of the mouth, both just large enough to make eating painful. But overall, the medication is working.

Being tied down to a specific time for each injection is becoming irritating. Jeremy and I had to turn down an invitation this week that we were both interested in attending, because it would have been untenable for me to 'shoot up' in the bathroom in the middle of it.

You see, one of the annoying things about Neupogen is that it must be stored in the refrigerator, until half an hour before Injection Time, when you have to let the syringe return to room temperature before you can use it. This restriction was the main barrier to venturing out from home on Tuesday nights. Then, about a month ago, I learned that diabetics use 'refrigerator bags' to keep their insulin cool when travelling. So I visited the Wellington Diabetic Society, and the elderly gentleman manning the office was of great help. He showed me this fantastic little product that diabetics use, and I bought it straightaway. It is a fabric pouch about the size of an A5 piece of paper, filled with little crystals. 20 minutes before you need it, you immerse the bag in cold water for 5 minutes, then let it dry out for a further 15. The crystals swell up into a gel, creating a little refrigerated bag.

I tested it for the first time three weeks ago, when Jeremy and I went to a family dinner at Jeremy's aunt Sarah's house. At 8pm I snuck out to the hallway to get the medicine out of said pouch, and at 8:30pm went into the bathroom to inject. Jeremy came with me, because I tend to get nervous when I have to inject anywhere other than the comfort of our own bathroom. It's all psychological, and I don't know why it happens. Anyway, Jeremy injected the medication, I stuck a sticky plaster on my tummy, and returned to the dinner party, without drawing too much attention to myself. And now, three weeks later, without any further soaking, the bag is still cool. It is the best $39 I've ever spent. And it gives me hope that Jeremy and I could travel to places without readily-accessible refrigeration (e.g. backpackers hostels, Asia, or a combination of both), and still be able to keep myself healthy. The places where fridges aren't freely available are probably the places where it's even more important that I inject myself, to avoid bacterial infections. So our world-travel plans are once more on the cards.

learning the kerning

The book is at the proofreading and 'mucking about with typesetting' stage. I've spent at least 4 hours (so far) playing with the kerning, trying to get the text into a form that is typographically respectable. It's hard work, but I really enjoy it. There's just a long two weeks ahead before it is sent to the printer...

Here are some photos from our recent (and too-short) trip away to Weber (in the Tararua district, about 30km east from Dannevirke):

The house we rented for a few nights (it was even more gorgeous inside)

The early morning view from the verandah

A visit to Herbertville beach (this photo doesn't capture its beauty; the sun was making the water a perfect aqua, and the sand was the colour of caramel)

The longest place name in New Zealand... and the WORLD!

Pretending to be part of the fountain at Dannevirke

It wasn't quite a tropical island (like where my mother and brother are this week), but we had a good time, despite the terrible cold I was recovering from. We read books, and listened to surprisingly good local radio stations. I taught Jeremy how to light a fire. And we ate delicious cheese.