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 September 26, 2003 09:36 AM
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