September 30, 2003

Happy Interlude

Given an afternoon off -- free instead of admitted to hospital! -- Marla and I have this delightful sense of truancy. It's one of those perfect fall days -- sunny, breezeless, brilliant blue sky. We drive to center city, select a small restaurant with outside seating and excellent sandwiches (goat cheese and roast peppers and olives and garlic -- yum!). We're joined by Marla's husband who is also an old friend of mine, and sit outside in the sun having a fine lunch, grinning from the surprise pleasure of it all.

Marla has patients that afternoon, so she takes off, and Larry takes me to Lord and Taylor to look for slippers. Being an excessively well-trained husband, he hangs back slightly while I pore over the selection, agonising over the cream embroidered pair vs the dramatic black embroidered pair, occasionally waving an alternative design, or saying, Mmmmhmmm, at appropriate moments.

Slippers achieved, Larry takes me home, and I get to say hi to EtQ and the cats again. Much luxurious stretching and shedding of fur from all four, much catching up on tummy rubs and walks around the neighbourhood. Trot up between bouts of quadruped indulgence to the little local Muslim store, in hopes of finding something not too frilly for a nightdress. I found the limitations of my usual t-shirt nightwear while in the hospital last time. Each time you roll over and go to leap out of bed, you find the damn thing has rolled up to your waist. Makes it impossible to keep your room door open, and then you lose out on nursegossip, which is not to be borne.

Find a couple of really cute fine cotton Indian shifts, lightly embroidered and very inexpensive, and also a big bright orange and gold and black striped robe, that nurses take to calling my Tiger Dress. It serves fine as a dressing gown, and leaves room for expansion, which I'll need given the upcoming mass doses of steroids.

Finally, I see a few neighbours and friends, catch up on news, get reactions to the new haircut. Even sneak over the road to a friend's house and have a forbidden quarter glass of red wine. I tell you, it was a moderately cheap glass of plonk, but the whole thing tasted ambrosial. There's something about a stolen day and a sneaked glass of wine that is good for the soul.

The whole afternoon set me up wonderfully for going back to the hospital, and acted as a little fuel cell that got me through quite a few of the ensuing days with a feeling of warmth and cheer.

However, 4.00 comes, and still no call from the hospital to let me know a room is available. Since I've been given various dire warnings about the probable brevity of my lifespan if I kept on dragging around as I had, untreated, I'm somewhat anxious about this.

As instructed, I call the unlovely receptionist to enquire. She snarls, "Well, if you insist on a private room, you're just going to have to wait. I can't tell you when one will be available". So all this time she has been thinking I turned down the shared room she'd found because I was narcissistic rather than neutropenic, vain rather than vulnerable to infection. Even though Dr R told her otherwise within my hearing. So she's probably been dragging her feet on the whole thing. Wonderful.

With all the patience I can muster, I explain that I hardly have two white cells to rub together, and that a single room is a medical necesssity. She says she'll get back to me. Within ten minutes, I have a confirmed room, admitted directly via Emergency, and I'm on my way back to 3Center.

Posted by maddy at 11:46 PM

Hospital 2: Ready,

So, on Monday, my peripatetic oncologette suggests I go to her office the next day, see her coon-cologist, maybe get transfused, and then go from there to the hospital, where they want to put, as I understand it, a port into my chest for pumping chemo in, and a funnel into my brane for the same purpose.

I decide I need a boost, and arrange to get my hair cut. Francis, lovely friend and hairdresser, picks me up in his convertible, Bessie Smith loudly on the CD player, and drives me to his (closed) salon. Gives me a great haircut -- short, so it'll be less of a psychological shock when it starts to come out in clumps -- and swears up and down he actually arranged for me to have cancer so he could finally get to give me the short cut he's been nagging me about for the past eight years. In fact, it looks good enough that I see his point. All coiffed and cute, Francis packed me off with a big kiss and no bill -- what a sweetie. Was picked up by my friend Marla.

Marla has very kindly suggested she accompanies me, so she can see me tucked in at hospital and provide moral support. We go, as directed, to the oncologist's office. It has the usual out of date Time magazines, and one of those receptionists with more makeup than is advisable, a hectic orange flush on her cheeks, and an air of being bothered by the very presence of a bunch of patients who probably aren't even healthy for god's sake. She gives me a ten page history to fill in. I fill it in. She takes it without a glance at me, and goes back to discussing her personal life with the file clerk. Marla and I are treated to their low indignant dialogue for another forty five minutes.

Finally, a nurse comes out, takes me to a back room, and takes blood. (I really should start to keep count of how often they take blood -- today alone is four times, I think. No wonder I'm bloody anaemic. They give me a pint and take two.)

But I digress.

I go back to the waiting room and do what it's designed for, for another half an hour. Then the Haughty Receptionist tells me to go into room 6, and the doctor will see me next. Off Marla and I go. We sit in there. We sit in there. We sit in there. For two hours. Luckily, there are magazines. Unluckily, they're not quite my style of magazine: _Private Pilot_ and _Yachting Monthly_. Seems like the cancer caper is a growth business.

Finally, the oncologist arrives -- Dr R. Marla leaves, to give me privacy. He says he's not sure why Dr Zed wanted me to see him, but do I have any questions? Thousands, so I start with the simplest one. I understand I have blast cells galore in my blood stream. My understanding these are immature bone marrow cells. I'm wondering what the process is that's taking place inside my bones: a massive overproduction of cancer cells pushing out healthy ones before they're fully matured? Dr R takes deep breath: "I always like to think of cancer as like a garden. You have the nice fruit trees, and the nice veggies, and then you have the nasty weeds. Our job is to kill off the nasty weeds, and give the nice veggies and the nice fruit a chance to grow, and we have to do that very carefully...."

I failed myself here bigtime. I didn't scream at him, or stomp on his foot or spit in his little eye or anything. I just sat there and looked out the window, and when he'd finished, I told him I had no more questions.

He tells me that the receptionist has been trying all morning to get a bed for me in the hospital. It's taking a while, he admits. We go out together to peer at the receptionist, like a horned toad behind her rampart of a counter, and see what progress she is making. She says, triumphantly, that she has a room. A thought occurs to me, and I say to the Great Cancer Gardener, "You have remembered I'm neutropenic?". Erp. Argh. Owf. Nope. He was about to check me into a shared room with my lovely 1.2 white blood count.

He explains to the receptionist that I can't be in that room, because I have to have a private room since I'm acutely vulnerable to infection. She chooses not to hear the last bit, and gets very huffy. Slams down the phone, and says, "Well, if it's a private room, that can take HOURS". Tactfully, Dr R suggests we go out for a while, and wait to hear from his office. If I don't hear by, say, 5.00pm, call to check what's going on. Leaving the Receptionist from Hell behind, glowering and slapping files around with vicious efficiency, we escape.

What follows is a lovely interlude.

Posted by maddy at 04:53 PM

September 28, 2003

Home again 1

So, the hospital let me go home for the last weekend in September. I didn't have an official diagnosis at that point, but it was clear it was either a form of leukemia or a form of lymphoma. The thing that gave me pause was the discovery of a good number of blast cells in my blood stream, suggesting very active cancer of the bone marrow.

Needless to say, I was pretty anxious to know the results, so I asked when I could get them. Wednesday, they said. Almost a week after my bone marrow biopsy and five days after the lymph node theft. When I asked why it was taking so long, they said it was because my oncologist, whom I call Dr Zed, works at other hospitals on Mondays and Tuesdays. I said that in that case, I simply want another oncologist. One who's available. Dr Zed's partner, whom I was talking to, blinked a bit, but he quickly made arrangements, and the final agreement was that I would phone Dr Zed to discuss the results on Monday.

Weekend was lovely. I was home, the sun was out, the garden looked good, the house was actually clean because a good friend had gotten her cleaning woman in there for the day (thank you, Marla). Best of all, the animals were there to greet me. Oscar, the 18 lb Maine Coon, refused to let me out of his sight, galloping from room to room slightly ahead of me, so he could fling himself on his back and wave his paws at me to invite a tummy rub as soon as I arrived. He became particularly fond of lying on my keyboard, achieving one complete system shutdown, two major recalibrations of the monitor's performance, and one email. So, if you got something that said

ty88vweytru o/
fgq i[b-oh34$$$$$B09igh1`6TZ
0UI4U 8\rt

it was probably from Oscar. I don't think he mentioned anything about penis enlargement, but you never know with a cat.

On Monday, I called the doctor. She's learned from experience with me that it's better to be direct. Diagnosis? T-cell Acute Lymphoblastic Lymphoma -- a neat aggressive little number that manages to essentially straddle the fence between leukemia and lymphoma. I asked the prognosis, and she said "I'm aiming for a cure". I politely persistently asked how likely she thought it was that she would meet her objective. One in three, basically, make it to ten years. She thinks we can do aggressive chemo and then a bone marrow transplant.

A friend happened to call five minutes after this conversation. I wasn't even too sure who it was calling. What I found myself crying about was my animals: who would look after them? How can I provide for them? Poor Rebecca handled the conversation with tender aplomb, but it must have been rough for her.

Posted by maddy at 09:05 AM

September 26, 2003

Hospital Stay 1: Testing, testing

Well, in the afternoon of Wednesday September 24th, I checked into hospital (Jefferson). By then, I was feeling so exhausted and breathless I began to wonder if I had something serious like Jim Henson Pneumonia, and that the signs of anaemia were just a side effect. Much melodrama bidding farewell to Emily the Quadruped, my ancient German Shepherd, much kissing her on the nose and saying goodbye, in case I never came home again. Quick phone around to my excellent neighbours and friends, and they rallied to take care of Emily and my three cats and generally hold the fort until I got back. Sorted my credit cards and other stuff -- not going to need the clothing store cards or coffee shop freebie cards in the hospital, will need the health insurance cards and ID cards.

Took a cab to Admitting and found.. I had a wallet full of coffee shop freebie cards and clothing store cards. I had carefully taken all my insurance cards out of my wallet and put them in my desk drawer for safe keeping. Despite this spectacular display of stupidity, I managed to get them to let me in. Up to the third floor, which is studiously unlabelled, but I managed to find out is Family Medicine and Oncology. Hmmmm.

I am just settled into my room, unpacked and sinking gratefully into bed, when a nurse comes in and says she's going to put in my IV for the coming transfusion. I don't know if it's to do with the anaemia, but as soon as she identifies a vein it just rolls out of sight. Three tries at setting the IV, and she calls an oncology nurse. This turns out to be almost literally a life-saver. First, he sets the IV without my even knowing he's doing it. Second, and way more important, he looks at my blood count and announces I am neutropenic. Although this sounds like some obscure Usenet group, it turns out it just means I have a dangerously low white cell count (1.3) and am hence very vulnerable to infection.

The good news about the neutropenia is that the nurse promptly whisks me right out of the shared room and into a solo room -- wonderful quiet and solitude, which is what I need about now. The bad news, apart from three times daily lectures on the general topic of "an infection could kill you", is no flowers allowed in my room, no fresh fruit, no uncooked vegetables, no gardening when I go home. And no leaving my room without a mask.

After I was settled in to the new room, they began to convert me into a patient -- a whole new type of being. Given a sleeping pill, unasked, but then awakened every couple of hours for vital signs (blood pressure, temperature, oxygen uptake, lung sounds). Woken at 2am to get taken up to the CAT scan for a complete body scan, to see what my lymph nodes looked like. Filled full of IV Atavan, and given a bone marrow biopsy: not as bad as I imagined, but not fun. The discomfort was relieved by the nurse who held my hand and sang some sort of music hall song loudly throughout, so I spent most of the procedure laughing.

That was all done on Day One. On Day Two, they began to transfuse me with lovely haemoglobin. Three units of it -- which meant nine hours of transfusion, starting out with half hour checks of vital signs. But boyoboy, was I meant to be a vampire, or what? Within a few of hours of starting the transfusion, I began to feel better. My skin got pink, and I could feel energy coming back into my body. Looked in the mirror and I looked like me, rather than a corpse. Could walk around and climb stairs without getting breathless. Just an amazing transformation. They spoilt the effect a bit by taking me into surgery for a total anaesthetic to do a lymph node biopsy. Bastards chose a particularly fetching one, nestled in the edge of my neck, and took the whole damn thing. Greedy buggers, surgeons.

Day Three, the nurse came in and said brightly, "Here's your pill". What pill? "Allopurinol", she says. What's *that* for, I ask grumpily. "Oh, it's a pill you take so the chemotherapy goes better", she says happily.

It wasn't a shock, because I'd already been on the Net and found out I had the symptoms of leukemia (severe anemia) and lymphoma (enlarged lymph nodes). Plus I guess being on the oncology unit had been sort of a hint. But I was furious that I wasn't being kept informed by my doctors. Meltdown time. Spoke to my two Family Medicine doctors and told them I might have cancer of the lymph system, and I might have cancer of the bone marrow, but I did NOT have cancer of the brane. If they wanted to treat me they needed to tell me what they knew, what they planned to do, when they planned to do it and why. Then we could proceed. At the end of my harangue, I think they felt worse, and I know I felt better. And they and the oncologists have been quite a lot better since then about treating me as a peer rather than a passive Cancer Victim who needs to be kept unaware of her diagnosis and prognosis.

After the lymph node removal, life took an upturn: they let me go home. Parting instructions included lectures about how to avoid infection, what not to do, what to eat, what to avoid eating, and on and on. But they let me go home! (Much of this whole experience is reminiscent of childhood, somehow: "Do you have a hankie? Your keys? Your bus pass? Don't take any sweets from strangers and be careful crossing the road.")

Going home was a wonderful idea, but strangely enough -- after all of two and a half days of hospital I sort of questioned how able I was to cope with it and take care of myself and the animals.

Posted by maddy at 09:36 AM

September 24, 2003

Life Suddenly Changes

So. About six or seven weeks ago, I'm showering and I notice that the lymph nodes in my groin are a bit swollen. Muttering to myself about the US tendency to wildly overprescribe antibiotics, I decide I'm in pretty good shape and can fight off what's obviously just a minor infection, no problem.

And I do. A couple of days later, no swollen lymph nodes.

A week or so after that, however, up pop little nodes behind my ears and around the back of my neck. I don't honestly give it much thought -- I'm not running a fever of any significance, and I feel fine. Decide I'll fight it off with no problem, and all I really need to do is just keep an eye on it.

And I'm fine. I'm working happily with patients and on custody evaluations, walking a neighbour's dog three times a week because my own dog is just too old to want to go far, and I miss the exercise. And I'm gardening and cooking and spending time with friends, and just generally having a fine tail-end of summer.

A couple of weeks go by. I notice that I seem to be developing some sort of slight asthma -- just a bit of shortness of breath. Couple more days, and the shortness of breath is more pronounced. Couple more days after that, and it's getting serious: streets in my neighbourhood that I had always thought were perfectly flat suddenly feel like steep hills, and I stop and gasp for breath after I struggle up them. Going up the steps to my house has me leaning on the porch column puffing away like a steam train, totally winded.

Meanwhile, I'm getting pale. Seriously pale. And since I have very sallow skin, my version of pale is a rather nasty shade of dingy yellow. My face is this colour and I suddenly look horribly and disconcertingly like my father after his death -- waxen and yellowy. And not just my face is pale: my hands are white. So are my feet.

I'm still trying to believe this is something I can just shake off, given enough self discipline, righteous food and fresh air. But it's hard to hear for the pounding in my ears, and I'm dizzy, and I've begun to bruise all over. If you so much as brush up against me, I bruise.

At this point, I've just started a new part-time job -- one I've been anticipating with great excitement, working with great colleagues and interesting patients. But all the same, third day on the job I decide I really need to go to the doctor, even though it means missing work.

Off I go. The Chinese medical student who examines me first keeps on and on about how yellow I am, and persists in poking my liver with horrid vigour. I keep trying to explain that this isn't yellow as in jaundice, it's sallow as in complexion. The truth of it is, though, I'm markedly more yellow than he is and he begins to talk to me in hushed tones about Hep B and I sit there thinking guiltily about every glass of wine I've ever drunk.

Finally he looks at the whites of my eyes -- not yellow. But the inner lids are a nasty white colour. And my hands -- white. And my feet -- white. He and the doctor consult, do one of those drain-one-arm blood tests and put me on antibiotics, because I've now developed the theory that I'm suffering from cat scratch fever. I wish.

The doctor says he's off on Tuesday, but if the results look interesting, we can talk on Wednesday.

I know it's not good news when he calls me next day. His day off. Tuesday. My blood counts, he says, are radically low and he wants to put me in hospital for a transfusion and "a couple of tests". Lying hound.

I'm still not taking this seriously, and really don't want to miss more work. So I suggest we do the transfusion on an outpatient basis on Thursday morning, before I see afternoon patients, and then I can maybe drop by hospital on Friday and have these two little tests. He very gravely says he'll contact the hospital and see what he can arrange. Lying hound.

Wednesday I struggle into work. There's a ten minute walk from the station to the college where my office is. It takes me twenty minutes and leaves me exhausted. I see a couple of patients. The doctor calls. He's sooo sorry, but the hospital doesn't think the outpatient transfusion is "advisable" and would like me to come in.

"When?", I ask.

"Now would be good", he says.

And with that, my old life melts away and a whole new one begins.

Posted by maddy at 06:28 AM

September 05, 2003

Introductory Blurb

A couple of weeks ago, all unsuspecting, I walked through one of those invisible portals where your whole life is suddenly and utterly changed. This blog is an attempt to chart that journey: partly to keep friends apprised of what's up, and partly as a journal for my own satisfaction (things happen so fast in this new world and events can be so overwhelming, it's hard to keep track). As such, the I quotient of this record is embarrassingly high. I'd make little waffly apologetic noises, but buggrit, if you can't be self-absorbed when you suddenly find yourself having to learn the language of oncology, I don't know when you can.

My thanks to my friends, whose warmth and humour and affection form the bridge that connects my old life to this new one.

Posted by maddy at 06:25 AM