Post your memories and thoughts about Maddy in her memorial blog
November 03, 2003
It's been a couple of days of paring down, somehow. Pleasures brief and acute, not sustained or nuanced. Light, light, light.
My bedroom faces south and is painted a curious chalky white, so matte as to be almost textured. It has various odd little chimney and buttresses in it, and they catch the early morning light, which is filtered through my white striped curtains. That light, and the patterns of the various vertical surfaces, is a very real pleasure every day.
Wonderful weather these past two days:people smiling and relaxed, things softened by the mellow sun and the warmth. The slightly hectic coloration of the leaves and the vividness of the fall blue sky all muted by this warm bathe of bronze, fruitful sun. Lovely.
It's been a difficult few days for me -- lots of mild nausea, dizziness, exhaustion. The Daunorubicin builds up in your system and it's hard to stay ahead of hydration and eating. Lost another couple of pounds this week. Plus, my blood counts are way down. Platelets still nice and high, but Hmg very low, and with that goes the tiredness and breathlessness and feelings of hopelessness. Four hours of tranfusion tomorrow should bring me back up to fine gnashing and snarling form again.
The truly delightful oncologette says I've lasted twice as long out of hospital as she expected me to, but insists I go inpatient next week: five day a week very intensive chemo, plus a bone marrow biopsy. I feel both defeated and relieved.
Used the numbing cream today that a Canadian friend sent for me (hi Owen!). Amazing. Simply didn't feel that one inch needle so much as touch me. Couldn't believe it.
EtQ the noble hound is not doing well, alas. She has becme very lame indeed, and I cannot persuade her to sit up at all until mid-afternoon. She pees where she lays (luckily I have several doggie beds which cycle through the wash), and hardly even makes it to her doggie dish to eat. I keep feeling if I could only find my own energy, I could maybe find a way to mobilise her. But it's not looking good, and it's too late in her life to ask anyone else to take responsibility for her.
It's as if, bit by bit, everything gets stripped away.
November 01, 2003
Went slowly, very slowly, around IKEA last night with a friend, looking at sofas. Nothing too exciting but a real exercise in normal life, and as such a substantial pleasure in itself.
Came home knackered, fed the animals, remade the bed (end of chemo week! clean sheets day! a stepping stone!), replete with new duvet cover, tucked in and slept. For ten glorious hours.
Woke up and first thoughts weren't even about cancer but about the softness of the morning light filtering through the curtains. Didn't even remember to do the anxious Nauseau Quotient Check. Instead wriggled further in to bed and luxuriated in the the three stolid lumps of contented cathood that were ranged around me, sleeping peacefully.
Lovely start to the day.
October 31, 2003
Not such a bad day at all. Chemo itself took only about forty five minutes, instead of the four hour wait for the Pharmacy to do its thing. Extraction of the port access needle was completely painless. And a good friend, Bob M, gave me a lift home from chemo.
And the weather was simply beautiful -- soft warm air, leaves shining, people sitting out and smiling to themselves at this sudden gift of a late fall warm and sunny day.
Can feel myself recovering from the Monday chemo, gradually: was able to cook again tonight (mushrooms, chicken, cream, tarragon, garlic over Kim's home-made baguette --mmmm), and did a small amount of chores and sorting, which helped that feeling of being overwhelmed. But at this stage I feel like a rather battered frog: I spend Tuesday-Sunday climbing out of a well, only to be hit on the head, hard, with a mallet come Monday morning.
At least there's two whole days before I get my next being hit on the head lesson!
October 30, 2003
Chemo 4 and 5
Feeling a bit rocky over the past couple of days, and rather plaintive.
The skies have been overcast and it seems to have been raining for days, so my healing sky glimpses haven't been available to make things better. I know conventional wisdom always says go someplace special in your head when you feel bad -- by the sea, in the woods, near a river -- but that's something I've never been able to achieve on demand. Instead, I seem to go to my Unhappy Place, as I've always thought of it: a very still, quiet space where I just wait for stuff to be over. Quite a bit of time in my Unhappy Place this past two days.
This isn't awful awful stuff -- on a Not Fun Scale of 0-10, where 10 is Absolutely No Fun At All, Not to be Borne, I'm no higher than a four or five. But the constant niggling feeling of seasickness kept me awake a couple nights, and things taste funny (baby peas -- a favourite treat -- taste like dirty dishwater -- feh!) and my tongue and my fingertips are numb and tingly and...
Bottom line is, I guess it's easier to be in touch with the damage chemo is doing me than the good right now. Then again, those nasty pulpy lumpy lymph nodes are all reduced and discreet, so obviously some good stuff is going on.
It seems like early days to be whingeing, given that I'm essentially pain-free and still at home. But whingeing has been what I've felt like doing. Fretful.
Today's a bit better: new anti-nausea meds from the oncologette have made life a lot easier, and I slept through the night last night. Plus today was a beautiful fall day again, and although I still tended to see it through a glass darkly, I could feel the sun on my arm and see the shininess of the autumn leaves. And chemo was only a two hour process today, not four or five like yesterday.
One more chemo tomorrow, and then a whole glorious weekend free of the stuff.
October 28, 2003
It's early morning and the cats are chittering through the windows at the late fall grackles, and the dog and I have been for a long slooooow walk, two old biddies struggling along together. The sky has gone from early silver to a promising sharp blue, and my spirits are better than they were yesterday evening.
The good news yesterday was that while I was at the Hospital Pharmacy, the social worker who had been to see me when I was up on 3C came by. She's a good woman -- nothing sentimental about her at all -- and she promptly signed off on all my co-pays, since they came to over $70 and she knows I had to give up work as soon as I got my diagnosis. That made as much difference to my spirits as it did to my budget, and cheered me up no end.
Not a particularly good night's sleep -- too queasy and restless, and this nasty metallic taste in my mouth -- but basically I caught a few hours and feel a bit better this morning. Thank ghod today is a day off chemo and I can nap a lot and take it quietly.
And thank heavens for the cats who clearly sense when things are grim. Oscar scretches himself full length along the edge of the bed, like a great big hairy bumper. Harold curls into a little hedgehog ball and snugs himself into the crook of my knees. And Jeoffry wraps himself warmly round my feet. I feel a bit like one of those old time crusader effigies, the sort with his dog under his pointy feet.
October 27, 2003
Spent from 11am to 4.45pm either waiting to get chemo or getting chemo.
Fucking Jefferson Hospital refuses to supply peg-Asparaginase (a slow-release form of the chemo I'm presently getting, that requires one injection only, rather than eight injections administered every other day). Peg-A is just as effective and less prone to evoke a drug reaction and obviously less stressful than my L-Asparaginase schedule which -- since Jefferson doesn't do outpatient chemo on weekends -- involves going to the Cancer Centre on Monday, Wednesday, Thursday and Friday for two weeks. It's thought to be more expensive, though, so they turned it down even though one shot is eight injections worth.
They also refuse to fund the numbing cream used for accessing my port. I just wish someone would hold down one of those administrators and drive a one inch long needle into his/her chest wall, and see what fun it was. And since chemo breaks down your mucous membranes, you end up with mouth sores, however careful you are. So the oncologette prescribed a lydocaine mouth wash. Which Jeff won't pay for either.
They sure don't mind whittling away at the nickels and dimes after they've fed you full of chemicals that leave you unimaginably tired.
Tomorrow's my day off and things will doubtless look better then. I'm off to bed, queasily.
October 26, 2003
A couple of quiet days. Feeling a bit of a long way from the front of myself, somehow. I think I'm probably preparing myself for next week, which is when I start 3 x week chemo. I have some apprehension about this.
Yesterday I did a fair amount -- had a long walk along South Street, bought materials for turbans, had a stellar Reuben sandwich. Ended up very tired. It was a lovely fall day, but I felt a lot of the time a little reserved, perhaps a little sour, even. All these carefree people out in the sun, enjoying themselves. Felt set apart. Kept reminding myself what a lovely day it was, looking for the sky and the sun on the leaves. But the enjoyment was effortful not spontaneous much of the time. Not much peace of spirit.
My latest diagnosis is that I'm currently suffering from a small bout of self pity and a slight case of dread. Nothing that actually starting the increased chemo won't solve.
Today, I had an unexpectedly delightful visit from friends. Like the best visitors, they were pleasantly quiet and relaxed, and I didn't feel I ought to be entertaining or high energy. It was just so good to sit and be. They also brought wonderful gifts (including the most insanely beautifully soft and luxurious sheet I have ever slept under -- as soon as they left I remade my bed and snuggled down and couldn't believe the silky softness of this sheet.) The brought a monstrous CD player, since entropy had reduced mine to sullen silence, and then JK fixed the sound on my computer (which I celebrated by listening to the SpongMonkeys as soon as I got up from my post-visit nap) and checked the hard disc, which has now stopped making sproing sproing noises.
And tonight my Raiki electrician came by with a fresh set of breakers for my electrical box, and worked for an hour for free, just to make sure it was all kosher.
What strikes me is that people are really amazingly sweet.
October 24, 2003
Nice night. It was a clean sheets night, which always makes for specially good sleep, I find. I have wonderful pure cotton sheets that make me feel cossetted, and the cold outside was just palpable, so I'd wake up with a cold nose like a healthy dog and snuggle deeper into the duvet. Lovely stuff.
Then I woke up at 7.00 to the early morning light and the setback thermostat had done its thing, and the house was warm. To me, that thermostat is simply magical. I remember waking in the mornings in our coal-heated house in London in the 1950s to layers of frost on the inside of the windows (made great pictures of leaves and ferns); to air in the house so cold you could see your breath; to the frozen bathroom sink that needed boiling water poured down it to dissolve the ice before it would drain. This little device that allows me to sleep cool and wake warm is pure delight.
Curious how at times like this the mind wanders backwards in time. I've been more in touch with my parents and grandparents and my childhood this past three weeks than for many years.
Small pleasures await, and they're precious. A regressive cup of tea -- a rediscovered comfort; a banana smoothie -- easy and nutritious alternative to the Dreaded Egg; a cappuccino from a good friend's homeroasted coffee.
Life ain't so bad.
October 23, 2003
First cold day of the season.
And my damn furnace doesn't work.
Two helpful handymen from the neighbourhood come by and footle with the thing for an hour and a half. No go. House is 62 degrees.
I call a HVAC person -- expensive but super-reliable by all accounts. He dispatches someone due to arrive at 3.00pm. At 2.50pm I take the garbage out back, carefully closing the kitchen door to ensure the cats don't get out. And find that one of the furnace footlers has slipped the lock on the door handle, so I am now trapped in my tiny back yard -- the back gate is locked, with the key in the house. The back door is locked. The dining room window is locked....
So I stand on a garbage can and peer pathetically over my seven foot fence, piping, "Someone please help me" in a muffled way from behind my mask. Feel like one of those ghastly "I've fallen and I can't get up" ads -- a hundred years old.
Luckily a neighbour happens by, and I get her to go round to the front of the house. Front door is, of course, locked, and all neighbours with keys are out at work. Luckily, I have low-security front windows, and the rather large neighbour is able to push one open and clamber in the house, which involves lying down on the front deck and wiggling valiantly forward, pushing furniture out of the way as she goes.
At which time the HVAC guy arrives, to see one ample neighbourly rump disappearing through the front window, me waving vigorously through the dining room window to signal him not to call the police, and two cats trying to get out the open window. (The third cat, Oscar, is arched, hissing and spitting, preparing to attack my good Samaritan neighbour. Luckily I pound on the window and distract him.)
There follows a pure Marx Brothers scene, in which neighbour goes to let HVAC guy in, decides I'm the more urgent case and gallops towards the back of the house. I'm gesturing to her urgently to close the window, so the cats don't escape. HVAC guy is trying to hand neighbour her purse through the window. Neighbour opens front door for HVAC guy, sees him handing her her purse through the window, closes the front door again, stoops to retrieve her purse, thanks him and closes the window on him. Comes thundering back towards the back of the house (she is convinced I'm an incipient pneumonia case, I think), remembers the HVAC guy is still standing on the front porch. Turns round, opens front door for him. He stands there, a little baffled by the entire process so far, while two of the cats canter towards the open front door. I'm yelling, "Close the door! Close the door!", the neighbour is teetering between opening the back door and closing the front, the HVAC guy is teetering between fleeing for his life and extending a helping hand to what are clearly two lunatic women, and the cats are sufficiently alarmed by the galumphing and yelling that they pause in their escape bid.
Eventually, all resolved itself with no cat loss and an enhanced reputation for eccentricity. Pretty good outcome, all things considered.
Once safely at work, HVAC guy finds that my breaker box was in a fine state of disarray, with one breaker having arced so often, the metal is half burned away. Erp. He gets the heat going. He gets talking, as HVAC guys do. Turns out he's a Master Reiki Practitioner and is going to work on my Energy Levels tonight, using Healing at a Distance Techniques, while he's substitute teaching an evening class in Air Conditioning.
Somehow, the disarming absurdity of this cheered me up no end, and my Energy Levels came back up to their old selves. Cooked dinner with a friend -- the first time I really cooked since I got home. Sesame stir-fry of pork tenderloin, red and green peppers, ginger, and onions. Just having had the energy to cook it myself made the meal delicious. Such a treat.
One Day At A Time
Having never really had any religious faith at any stage in my life, I nevertheless now find myself haunted by the prayer of St Ignatius Loyola, remembered from high school days forty years ago.
"For I have done those things which I ought not to have done,
and I have left undone those things I ought to have done, and
there is no health in me".
It's a challenge, picking one's way between self-excoriation (nothing to do but lie down and yowl) and denial (nothing to see here, move along), in the face of all the inadequacies and mistakes and screw-ups. It's hard finding energy to do what I need to do to, but there's no burking it. I have to do long overdue chores so I can manage my life over this next difficult year, give myself some small degree of security.
It's a grey day today, inside and out. I'm feeling physically better, though, so I just need to focus and get through today's chores, and let worries about yesterday go, and let worries about tomorrow go, so I can use my energy for today.
Great. I seem to have invented Twelve Step Cancer.
In happier thoughts, a coffee-roasting friend just sent fresh home-roasted beans, so I can start the day with a delicious cappuccino. Another friend sent an entire care package of Brit goodies (Digestive biscuits! Lucozade -- The Drink That Brings You Health!), so I can have toast and Silver Shred for a mid-morning snack. And dear friends have provided great sumptuous heaps of fluffy towels, so I can have a great big bath each day without worrying about doing the laundry all the time.
October 22, 2003
It's nearly 7.30am, and I like this time of day.
I've just had a good night's sleep, and the sky is greyish opal-coloured. The loud noises of the morning aren't in full flow yet, it's quiet out, almost secretive. And there's this feeling it could be a lovely day ahead, full of comfort and pleasure and things going right.
Better than yesterday.
October 21, 2003
Chemo: the day after
Well, steroid hunger has hit. Yow. A gnawing, constant, growling, raging HUNGER.
But it's sort of interesting in an almost Zen way. What's absolutely clear is that nothing on earth will satiate this hunger. No amount of ice-cream, candy, cookies or cake would do the trick. No quantity of fried bacon, roast venison, lamb chops, or spare ribs would touch it. Not jello, not meringues, not smoked salmon, not fresh pineapple, not fried onions.
Nothing would quiet it.
Which gives me a slightly off-kilter zen-like relationship to the hunger – it simply is. Nothing really I can do with it, no negotiating with it. The only thing I can do is simply experience it, feel it.
This is new.
Meanwhile, in breakfast news, I don't think I shall ever eat another egg. Even the *word* "egg" makes me heave. Don't know if this is from the chemo, or the excessive numbers of eggs I have been eating to fill my stomch before downing the steroids.
Tired today, big time.
October 20, 2003
Chemo 2: the process continues
So Chemo session 2 happened, and with it some good news. First, the great galumphing lumpy lymph nodes around the back of my head and down the side of my neck have retreated to their former lissome almost invisible selves. Second, my haemoglobin counts went *up* (9.5), suggesting there is now a little bit of room in my bone marrow to make blerrrrd.
The usual administrative snafus: they didn't have the Daunorubicin available at the onc's office, so I had to go over to the Bodine Cancer Center. There awaited a nice pink chair and a blankie, a nice big bottle of saline drip for hydration, the anti-emetic (Zofiran), and my two doses of chemo. The bit I dreaded was accessing the port in my chest: last time both insertion and removal of that one inch long needle *hurt*. These women had done this stuff before: it was relatively painless, with just the Oncology Nurse mantra of "Sorry, honey", as they inserted it and it hurt just a little. Removal -- a yelpyelp procedure last time in hospital -- was completely without discomfort.
So I settle in to my chair, trying to avoid the ubiquitous TVs, all playing Ellen deGeneris' talk show, and they administered the saline and the Zofiran. Unfortunately, some line of the order had not been cosigned, and the nurses said they couldn't administer chemo without it. So there I sat for the next four hours, waiting.
Thank ghod for Harry Potter and for naps.
Turns out that the anti-emetic works quite a bit better when administered one hour before chemo than four hours before chemo…. But nothing too bad. Felt well enough to walk a few blocks and take the bus home.
All in all a Good Cancer Day today.
October 19, 2003
War of Attrition
Yesterday was in many ways an ideal day -- the closest to a 'normal' day I've had since that day I first went to the doctor feeling breathless and shaky. Can that really only be four weeks ago? It feels like another lifetime.
So yesterday was my ideal fall day: the wide blue skies I've yearned for, bright leaves, sharp astringent smells in the air, warm and windless. I phoned David, a good and dear friend, and suggested a drive out. He was wonderful: picked me up, toting his almost unbearably cute 4 month old Wire Haired Fox Terrier and drove us out to Chanticleer, a privately endowed "pleasure garden" -- 31 acres of old trees, gardens, streams and meadow. We walked slowly and companionably in the sun for an hour or more, he carrying the pup, me bemasked. The place wasn't overrun with people, so it was a gentle pleasure to sit on benches and look at shrubs and grasses and flowers. Late roses still out, anemones standing proud. Ducks and geese calling, and even a lone songbird tentatively singing an autumn song. Lovely stuff.
Yet by the end of the day, I was all sort of snarled up inside. Partly, I think, the experience of a "normal" day allowed me to reconnect with Life Before Cancer (LBC), and that left me bereft when I came back to my plant-free house, with its boxes of masks and sterile gloves and hand cleansers and bottles of salt mouth wash. And partly the saga of my watch.
There's so much loss right now -- mostly of my treasured independence -- that it's hard to know which particular loss is going to be the peg on which all my frustration and rage get hung. The watch was it last night.
I should add that, while I was in hospital, my gold chain disappeared when I moved rooms. This was my father's last gift to me, and meant a lot to me: had been a sort of amulet against bad stuff. Very important to me, it has been, for the past ten years or so. Yet when it went missing, I sort of shrugged and got on. A bit ooked by the loss of luck (superstition is a powerful force in serious illness, I'm finding), but able to cope. Then, when I went for surgery, I took off my pearl earrings and gave them to a friend (or so I thought). They've disappeared, too.
Then last night I went down into the basement to do a laundry. A helpful dog-walking friend had decided to launder my sheets for me while I was in hospital. Problem was, she'd scooped up my watch (which I kept under the pillow for ease of access during the night) and laundered it too. Not an insanely expensive watch, but a good one. It was small and elegant and I'd bought it for myself with some pride many years back and had always loved its look and the way it fit my wrist. The thing had first been laundered then dropped on the floor and scrunched.
The thing of it is, it can be replaced: I've loving and generous friends whom I'm sure would give me another watch. I still have enough dollars left to buy myself another one, come to that. But that wouldn't be the same damn watch. It's not the one I bought myself when I began to earn real money. It's not the one I've lived with and treasured all these years.
It's just another fucking loss, and for some reason it's the one I simply can't stand.
That was it. I lost it completely. I had friends over who, dangerously enough, were there offering to do laundry for me, and I'm flapping them out of the house, telling them it's time they went, telling them to go away, yelling that I'm being helped to death and everyone needs to leave me alone and get out of my face. I know I'm being unreasonable, I know I'm being ungrateful, I know I'm being unfair. But it makes not one whit of difference to my actual behaviour.
Guess I've hit the rage stage.
Then, last night, I was so wound up that I couldn't get to sleep. Finally drifted off at around 2.45am, having exhausted myself with imagining the chemo to come and the shape of life for the next eight or nine months and secondary cancer and whether I'll accept cranial radiation which has an impact on cognitive function and what my stopping point is on all this hi-tech interference. Your basic fun Saturday night fantasy, in short.
And at 3.30am, my cellphone rings. It's some sinister guy telling me I'm a motherfucker and he's coming after me, he's gonna kill me. I nearly tell him that he's too late, the cancer's beaten him to it, but just settle for telling him he's a silly little man and should go away now.
Sleep was a while coming.
October 18, 2003
A pleasurable morning
So, simple enough.
This morning I slept in until 7.15am, finally getting past the 5am bloodwork roll call that a couple of hospital weeks had grooved into my internal clock.
When I woke up, there were three cats quietly asleep ranged around me on the bed. The morning light was filtering through the curtains. It was quiet out.
I stretched and just lay there. Happy to be alive.
Simply comfortable and happy.
October 17, 2003
The need for stepping stones
Time to think -- and brood a bit -- now I'm home. The day has been grey and overcast, and I've felt a little the same way myself. It seems to me that what I need to do is build stepping stones between the overwhelmingness of Now and the too-distant shores of Cure. I promise myself that Jean and I will go to Paris when I'm better, and Luce and I will take our long-awaited trip to Florence. But those trips are so far from the here and now that they have hardly any substantiality at all. And I'll need more than the distant dream of travel to keep me motivated through these treatments when the going gets rough.
So I'm trying to figure out how to build myself some stepping stones to act as small promises of future pleasure, so I have short term joys to look forward to when things get tough.
Currently, life's somewhat challenging for a woman like me, dedicated to small sensual enjoyments: most pleasures seem proscribed. The impact of chemo on my taste for food remains to be seen -- it's known for making flavours seem different. I'm not allowed to drink. I'm not allowed to garden or even have plants or flowers in the house. With white cells heading for the single digits, I can't go to concerts or movies. With red cells depleted, energy for walks is in short supply. Because of the steroids I have had to cut down on carbs and sugars, because heavy duty Prednisone makes your blood sugar skyrocket. Because of the steroids I'm beginning to look like the Blockbuster Video hamster. Starting next week, I'm going to look like the Blockbuster Video hamster after an all-night Nair party.
I've already found many of my peaceful pleasures again: the blueness of the sky, the song of a mockingbird, the sight of lush summer's-end gardens, the sound of my biggest Maine Coon, Oscar, purring. Even the smell of my dreadfully smelly old dog is a peaceful pleasure. So is sitting companionably with a good friend, both of us quietly reading.
It's the "upcoming events" that are sort of thin on the ground -- I look at my calendar and all it seems to say, for the next six months, is "Chemo". So... Luce is going to visit from Montreal -- a large stepping stone. Jean is coming back again to visit from Ottawa -- another stone to look forward to. Chris and I are going to go to Cape May one day before too long -- a good-size stepping stone, that. We're planning on going on the candlelit tour of the Christmas decorations at Fairmount Park, too -- something we've both meant to do for years. Next week, a local hairdresser has promised to teach me how to wrap those wonderful stately African turbans -- a definite stepping stone, there. Doesn't seem so rough or so meagre, listed like that.
October 16, 2003
1st Day Home -- The Big Thank You
First: it's a simply beautiful fall day. Crisp blue skies, slight wind riffling the small clouds, shiny thinned-out leaves with the sun coming through them, like the back of an old woman's hand. Gardens still flourishing. People out and about. Healthy people. It's the perfect day to be outside. My grin is wider than my mask. (Actually, thanks to the steroids, my face is wider than my mask.)
Second: people are beyond kind. My "imaginary friends", as Internet best mates sometimes get called, have been anything but imaginary. They've kept up a steady stream of wonderfully witty silly email chatter that has made me laugh enough to hurt a whole series of stitches (lymph node, chest port, Ommaya port successively). Not only that, they have been insanely generous -- I haven't had so many gifts and treats since I was a kid. And on top of all that, many of them have signed up to give blood or become bone marrow donors, one of them has shaved his head in solidarity and another has cut her lovely long hair to donate it to Locks of Love, which provides wigs for kids bald through chemo or other illness.
Jean, from Ottawa, came by for three or four hugely helpful emergency bail-out days, bringing a Care and Feeding Fund she'd raised from Canadian friends. and is returning in a week or so. Luce, from Montreal, is coming in before too long. Kiki from Greece is coming over for a week sometime later this fall. And while I was in hospital, Hilary held it together for me as no one else could have: she was there every day, quiet, undemanding, thoughtful, funny, a reliable presence. Then she'd go home and feed my cats and walk my dog and go to bed, and get up and do a hard day's work at the hospital, and then do the whole thing over. Thanks to her more than I can say. As well, I had such good visits from folks while I was there: Marla and Larry and Chris and David and Jane and Sasha and Anna and Frances and Bob and Cindy and Nancy. Thank you one and all. And finally, thanks to Becca for the messenger service: she's become my own personal version of Mother Christmas and her calm presence was always a treat in itself.
However awful all this is (and I must acknowledge that, in quite a few ways, lymphoma is not the most fun I've ever had), it's made me feel all Sally Field and loved, which means it's brought me no small gift. It's gonna be damn hard to be a stroppy crow and a cranky Ancient Crone when I've gotten all this kindness.
OK. I lied about the last bit.
It's never going to be difficult to be a stroppy cow. Especially a stroppy cow on STEROIDS.
Third, my neighbours rock. People have offered to help and actually meant it. One came in and dealt with cat litter since us types with few white blood cells aren't allowed (thanks, Stephanie). Another came in and took all three cats to the vet to have them checked for toxoplasma (thanks, Pam). A third drove me down to my local tiny supermarket (thanks, Debbie). At the grocery store, when they saw me come in with my mask on and found out what was up, they set up a free delivery system for me then and there (Thanks, Ken Klein). The couple next door, the couple over the road and the woman from the other end of the block all came by to see if there was anything they could do to help (thank you George and Stacey, Thaddeus and Meredith, and Barbara).
Fourth, you know I'm feeling better when I start to sweat the small stuff and get all whiny and fretful about what are basically little issues:
- the paranoia of being home: what's clean? how often do I have to wash my hands? how do I know what it's safe to pick up? how do you get out of the bathroom without touching a Contaminated Surface? what if I fall? is it safe to go into the basement where it's sort of mildewy?
- the exhaustion of being home: where is everything? how on earth do I find the energy to cook everything I need to eat? why can't neutropenics fill up on salad, dammit? why does the dog shed so ferociously?
- the difficulties of finding an adequate diet: chemo makes things taste weird, steroids make your bood sugar go sky high. So I have to limit sugar and carb intake, and steer away from the tempting little snacks of apple sauce and peach bits and jello. I'm not allowed raw fruit or salad stuffs, so WTF am I supposed to eat? And how come every time I eat I have to swill my mouth out with salt water -- is this supposed to *help* keep things down?
Actually, that's really all I can think of to complain about right now. I feel happy, sunny, cosseted and, beyond a slight breathlessness and some tiredness, quite fine. Chemo on the first go-round, even the stuff in my head, was pretty low-key in terms of side-effects. May get worse as things go along, but we'll have to wait and see on that one. Can't say I relish the new rotund moon-faced me, but that is allegedly temporary. Can't say I gleefully anticipate going bald, but it's a whole lot better than dead.
Heigh ho. Life ain't bad, folks. Thanks to my friends for being who you are.
October 15, 2003
Sprung from Hospital!
Well, it was close.... BUT I GOT HOME!!
A gorgeous day out, ETD about 1.30. At 1.15, they say I can go home right after they've transfused four units of platelets. All packed and ready, I lie down and they start the platelets through the port that goes stright towards my heart. Nice brisk gravity drip -- rattity tat. Out of here in a minute.
Well, two minutes later, my face is bright red, my lips are swollen and tight, my tongue is tingling and my chest feels like a hippo is sitting on it. Thank ghod the RN stayed in the room to observe -- just as I croak "I think I'm having a reaction", she gets a look at my face, unclips the bag of platelets (instant relief) and calls for backup. Flurry of injecting benadryl and stuffing tylenol down my throat, and I'm more or less back to normal, except more scared than I was, with a much tighter breathing pattern.
That little episode took up another five hours before we got out of the hospital -- take blood, do bloodwork, check platelets, readminister benadryl and tylenol, administer new bag of platelets at a much slower rate.
Finally got out of there about 6.00pm, feeling tired but as relieved as I ever have. I just wanted to get home, I kept saying. Just let me get home...
Of course, en route home required two stops at drug stores to try to complete the raft of prescriptions I had (almost no drug stores carry 50mg Prednisone tablets, and I rather gave up on one CVS after the pharmacist assured me he could give me four 20mg tablets instead of one 100mg tab, and it would "come to the same thing".)
But then I was home, the cats were purring and making butter, and the dog was rolling over gently for a tummy rub and mooing. Sheer bliss.
Sleep! In my own bed! Shower! In my own bathroom! Pee! Without having to pee into a measured bucket thing! Home cooking!
Life just doesn't get much better than this.
October 13, 2003
Chemo Diary: Day 1
Well, it’s begun, finally, this journey – chemo has started at last.
So far, no side effects to report, apart from the 100mg of Prednisone I started yesterday, and which I get daily for a month.
Wooof. Activated? Waddya mean activated? I am going to be The Binky of Prednisone: “the horrer that walks in the nite… the babys cry wen i lok at them and ther mothers are helples to comfert them”. Last night, I was revved up, my thoughts going a mile a minute, and my brain all but twitching., And irritable? Every tpyo threatened to have the laptop flung through the window. Today I found myself shouting at my oldest friend. Even I’m scared of me.
Chemo itself, apart from the process of coming to grips with what it stood for, was relatively painless. Unfortunately, the brilliant job that the neurosurgeon did with my hairdo rather interfered with finding the Ommaya Port, and it took two oncologists and two neurosurgeons (!) close to half an hour of poking my scalp with sharp needles to finally locate the thing. When it was over, the junior neurosurgeon – great ox of a man – asked to identify where it was, since he’d been unable to find it until his boss came down and bailed him out., I felt his great size 9 thumb come down on the dome, and heard
One of the agents they use in the systemic chemo – Daunorubin – turns your pee fluorescent orange and makes your tears rusty red. Between this and the rash, I sense that the fates are insisting on a whole new colour scheme in my, ah, lifestyle. (I’m fascinated by that word, which I see as a sure and accurate marker for weaselese, be it magazinase or the worst sort of political demagoguery. Speaking of which, a friend gave me a magazine for my hospital amusement, and it had an interview with an interior decorator who was quoted as saying (and this was highlighted in colour [pale pink] in a paragraph insert, so it was obviously Important To Understand): “I advocate having a personal touch in every room”. Well, no shit. Really? In every room? The very thought! Give that man a medal for his daring approach to life, his innovative thinking, his sheer capacity to Go Where No Android Has Gone Before.)
Did I mention that Prednisone leads to ADD? Bizarre trains of thought? Discusiveness? Too many question marks per paragraph? No?
Anyhow, here we are, on the journey, twitching with steroidal energy (“I am Ahnuld! Hear me roar!”) and ready to goooooo.
John Birknes, Jefferson neurosurgery resident and major jerk
Only one episode in this two-week hospital stay really stands out as unpleasant and eminently avoidable. It involves a resident by the name of Birknes. Blond, with a buzz cut to disguise incipient baldness, and supremely self-confident concerning his properly preeminent place in the world.
So I’m up on the Neuro ICU, where there are no showers or loos, only commodes. I am At Stool, having a pee, feeling fairly decorous (except for the fact that the damn thing is set so high my feet dangle inches from the ground, and I feel like a three year old on a tube train again.)
Peeing away, I hear footsteps, and then my nurse calling out “She’s on the commode!” The footsteps don’t falter one second. Instead, the door opens a crack, and a great big used-car salesman’s grin appears, followed by an outstretched hand for me to shake. “Hi there!” he booms heartily. I feel like I’ve just met the reincarnation of Dick Nixon.
I demur. “I’m on the commode”, I say. “Please wait until I’ve finished”. His great big empty grin widens. “Oh this’ll only take a couple minutes”, he says without pausing a beat. And moves further into the room and then proceeds to administer a neurological functioning exam.
I am stunned into submission, and dumbly acquiesce to his ignoring my request to wait. I sit there, my feet still dangling, obediently following his finger with my eyes as he waves it from side to side. (I should, of course, have said “Follow this” and flipped him the bird.)
By the time he jollily exits the room, I’m beside myself with fury. I think of the past eighteen days since I got my diagnosis and all the things that have been eaten away by the cancer: not just my bone marrow and lymph nodes, but my professional sense of myself as a clinician, (having said goodbye to my patients as soon as I was diagnosed), my sense of independence (others are looking after me and my pets, and I’m considering putting the cats and the dog out to foster homes), my sense of a safe future. And with the actions of this self-absorbed jerk, what got eaten away at was my right to privacy. I’m no longer even seen as someone with the right to piss in private.
There’s a sorry postscript to this regrettable encounter. Birknes comes down to do a clinical followup with me on the oncology unit. I proceed to tell him how pissed off at him I am. He looks completely amazed – I get the distinct impression that it’s the first time in *years* that anyone has taken him to task about anything. I say to him that despite my request to wait, he came into the room and proceeded with the exam. He interrupts, “Wait a minute. I didn’t come into the room. I just looked around the door. I distinctly remember that.” (How he thinks he conducted a neuro exam from outside the room is beyond me.) Whatever, I tell him. The fact is he conducted his exam while I was on the commode. He boggles at me, and says, very loudly, “Why on *earth* would you object to that?” , sounding quite stunned at my eccentricity. I tell him that, with all that is happening to me, I still have a right to my dignity, and that includes the right to piss in private. “Well,” he says, in a let’s-hurry-this-along voice, “I can respect that. Now, about your recovery….” He gives me a quick exam, clearly put out that I took issue with him, clearly unwilling to apologise and -- bizarrely enough -- obviously unable to see what the issue is.
This strikes me as the quintessential person who should not become a doctor. Though if he had to, perhaps it’s best he became a surgeon so he usually only deals with other people when they’re unconscious. Fact remains, he’s the first genuine, dyed-in-the-wool thorough-going jerk I’ve encountered in this hospital, and I’m very sorry to have met him.
(His boss, Dr, Sharan, who did my surgery is, incidentally, a peach. Polite, considerate, gentle and thoughtful. Pity he hasn’t passed any of those qualities on to his remarkably arrogant subordinate.)
I needed that surgery like I needed a...
So, on Thurday morning I had my brane surgery, which is sort of a heavy-duty description of what they kept assuring me was a “minor procedure”. (“Minor for you, maybe”, I’d mutter, sulkily.)
It went pretty smoothly from the get-go (You know you’ve been having too many procedures when you get down to pre-op, and people greet you as an old friend.) Anyhow, I was fairly gibbering with nerves while I was in there. The anaesthetist came to see me, and asked if I wanted anything to mute the anxiety. I said merrily, “Oh no. It’s nothing. The neurosurgeon told me he does the whole thing by feel, not by sight, and that he just pushes the catheter into my brane until he feels a pop, and then he knows it’s in the ventricle. Teehee.” By this point I was giggling uncontrollably. “OK,” sez the anaesthetist, “I think I’ll give you this right away, then”. And pushes a great big syringe full of narcotic release into my port. Bless his cotton socks.
Next thing I know, I’m awake in the Recovery Room (where I spent the next twelve hours, due to an acute bed shortage in the hospital) and feeling ferociously hungry. I sat up and announced this fact to passersby in case they cared. (You know there are advantages to having had four procedures in the preceding ten days, when the Recovery Room staff know you and make treats for you when you wake up.) Given my accent (still traces of Brit after over thirty years here), they ceremoniously rolled up a bedside table, with a great flourish covered it with a table cloth (actually, it was a clean sheet, but it was pure damask in spirit), and served me a cup of tea and a home-made buttered scone. Pure heaven.
After that, things began to go downhill a bit. I was prescribed a large dose of a penicillin derivative – Ancefal – and as soon as they hung the bag, I began to have some tightness in my chest. This was reliably ascertained not to be a heart attack (“Squeezing pain? Any shooting pains? Left arm?”), but what we didn’t spot was that the chest tightness was the beginning of an allergic reaction to the penicillin. Over the next two days, things got a bit more miserable. Nausea and vomiting (*really* not a good hobby to take up immediately after you’ve allowed someone to drill a hole in your skull and put stitches in your scalp), a scary spiky fever, and just feeling like crap. Oh, and the development of a ferocious scarlet rash that stealthily spread over my entire torso – back, belly, chest, legs, upper arms. I look like a giant measle.
For two and a half days I was up in the Neurological ICU. This wasn’t because I was in need of critical care, but because they routinely do 24 hours of monitoring post brane surgery to ensure there’s no bleeding and no infection. The extra day and a half was because there were no beds available in the whole hospital. People were being admitted from Emergency and were spending 24 hours on stretchers down there before being taken to a room.
NICU has to be one of the most desolate places on the planet. It is inhabited almost entirely by patients who don't speak or move, and who exist only as extensions of things that beep and flash and go bing. No phone, no showers, nothing but machines that read your vital signs and make horrific post-horn noises if you aren't up to scratch. Because so many patients are in a coma, or close to it, the night nursing staff feel free to call out to one another and sing and generally make merry throughout the night. One of the neuro-surgical interns was singing Beatles songs fortissimo at 5am.
They are so used to post-surgical patients, that they were charmingly indifferent to my 101.5 fever. All they would do about it was throw Tylenol at it, although I kept pointing out we needed to understand the source, because I hardly have two white cells to rub together. The nurse treated me as some sort of health nut, being a crybaby about a fever, and offered me ice bags rather than recognizing that if it was caused an infection it could be life-threatening. There I was with no phone, unable to call anyone. For a while, it felt like some science fiction bad dream.
At dawn on the first night, I needed to pee (for at least the eighth time), and my beeper had fallen on the floor. I was at that time attached to five EKG lines; a blood pressure cuff that mooed into action on the hour every hour; a saline IV; a pulse-ox (not cattle, but a way of checking your oxygen uptake); huggy-legs (leggings which inflate and deflate like blood pressure cuffs and prevent thromboses post-surgery); and an oxygen supply line up my nose. Plus I had a profoundly psychotic hair-do, with a sort of moussed cockscomb rearing upwards stiffly, away from a narrow pink stripe of incision and sutures.
I managed to get out of bed and stagger across the floor to the door, leaning on my IV pole. I think I looked a bit like a spectral Bertha Mason as I opened the door (in a unit in which patients are not mobile and mostly can't speak). I do know that when I said, rather hoarsely, "Excuse me", one of the doctors looked up and said, "Good god".
It was one of the few good moments in NICU.
Oh, plus the fact that the surreal atmosphere of the unit was augmented by the presence of an Amish man as a patient. It was something of a visual shock to see his family, all in traditional Amish clothing, quietly wandering through the garishly lit, noisily beeping and flashing environment of the unit, bonnets tied, skirts at calf-length. I kept looking for the horse.
October 08, 2003
Briefly put, Neurosurgery came by and apologised for yesterday's snafu. Most maddening of all was, "If I'd only known about your case, I could have done the surgery yesterday afternoon." Grr to the NeuroPuppies who didn't take the messages to their boss.
Anyhow, I'm having surgery on my brane at 7 tomorrow morning. Since, as the neurosurgeon put it, "the brain is the one organ you can't replace", they keep me in ICU for 24 hours thereafter, to make sure my brane doesn't do nasty things like swell or bleed or show signs of infection. Then back down -- to a new room, but I hope a room in the same unit as I'm in now. The nursing staff on 3 Center are beyond belief good.
Just so you know, neurosurgeons don't actually insert the catheter section of the Omaya (aka Ommaya) using the MRI as a visual aide. My surgeon told me, "I do it by feel. I just push until I feel a pop, and then I know I've hit the ventricle".
Back in a couple days.
Actual appreciation, yet
It occurs to me that, what with all the whingeing and white knuckle drama, I'm really not doing justice to the good things that are happening in this hospital. Now, as anyone who knows me will attest, I'm no Mary Tyler Moore/ Sally Field/ perky little happy person. But there are good things happening here, and good care at Jefferson, too. I tend to be negative too often anyway, and fear and stress have made me focus a lot on what's missing, not what's there.
So. Redress time.
Oncology nurses. They are simply the best. The women and men on this unit work indefatigably with people who are dying, people in extreme pain, people having a 24/7 hissy fit, people with intractable wounds, people who are demented and people who have just had a rather unwelcome diagnosis and are tense and scared. They work up to twelve hours a shift, and they work constantly and cheerfully. They consistently notice when treatments aren't doing what they're supposed to do -- I hear them calling the MDs all the time, describing symptoms, suggesting causes, outlining possible ways of addressing problems. The Baby Doctors, as I think of residents and interns, have their little furry asses saved by these nurses about ten times a day each on average. A strong nurse can teach a new MD more in a week than s/he learned in years of medical school clinical training. Even in the two weeks I've been here, I've noticed my oncology resident, whom I call Dr. Puppy, begin to learn to listen to nurses and patients, to be more responsive to requests, to grow up as a doctor. It's an impressive form of training they put him through. (And he has needed it. ) When I first met him, I said there was nothing wrong with him that ten years wouldn't cure. Now, I think it's one or two years -- that's how strong these nurses are in their role as teachers of the arrogant.
This life is undoubtedly hard on interns and residents -- they're tired and they're scared. After all these years of training, they're suddenly called "doctor" and are supposed to be grown ups who know what they're doing. Some have defense mechanisms that allow them to work effectively. Others come onto the floor and start being condescending with oncology nurses who have 25 years experience on the unit. This is not a sensible strategy at any level. I would truly hate to be a neophyte MD who had pissed off the nurses on my unit -- it's no longer sink or swim, it's straight down to the bottom and glub glub glub.
Ward aides and other support staff. Remarkable people. Paid a pittance, I imagine, and work long hours at menial labour. Yet they are cheerful, helpful, prompt and efficient. They sing out their hellos, remember your name, have a joke and a bit of conversation with each patient. Did I say efficient? I managed to push the phone jack into the wall, trying to reconnect the phone. It took less than ten minutes for a maintenance guy to come to the room, and less than ten minutes for him to fix it.
Food. Well, it's a large institution, and it's pretty awful food. Bound to be, really. But the nutritionists come by and offer snacks and special orders and do their best to honour idiosyncratic dietary wishes. Much kinder than they need to be, and solicitous of their patients. Though I still get green jello not red, dammit.
Rooms. Mine is now decorated in what my oncologist calls "British American Princess" style. (She's a sarcastic cow and I adore her). But even the basic room is really comfortable and pleasant. No piped music, thank ghod, Now I've added my various gifts -- towels, pillow cases, sheets, a chenille wrap, a painting or two, photos of friends and my dog, cushions -- the place looks positively like home. I'll miss it tomorrow, which I'm going to spend in the ICU.
My oncologist: Dr Z. Short, bouncy, energetic and funny as hell. No respecter of persons, no nonsense. What she says is what she means -- she's upfront, honest, authentic. And has a wicked dry sense of humour. We make each other laugh a lot and give each other a hard time, which is about the best basis for treatment I can think of. Oh, and she's completely non defensive. When an oncologist friend suggested a slight change in the treatment protocol she's written for me, she welcomed it, asked for references, said she'd be glad to incorporate it if she could see anything in a journal about it. I like her a lot.
Her onco-partner, Dr. R. He of the "nice veggies, nasty weed" story. That really was a momentary aberration on his part. He turns out to be bright, funny, exhausted, thoughtful and very kind. I've no idea where the playschool story came from. Maybe he was worn out and on automatic pilot. He's always been very present and authentic and helpful when I've dealt with him since.
So this place is far from a washout. Snafus happen, and they are usually coordination snafus. Plus screwups that happen on services that are particularly hierarchical, like Neurosurgery -- I think the residents are almost too scared to talk to their Attendings. But an awful lot goes right here, and I feel cared for and cared about in a way I never expected. Big thanks to the staff who've made that happen.
October 07, 2003
Grrrr. And HOWL.
At 12.30, they told me they *weren't* doing neurosurgery today. Their schedule is too full. This meant I had been npo for twelve hours, pointlessly, and -- much more important in the grand scheme of things -- they can't start chemo for yet another day. Meanwhile, the lymph node on the back of my neck is getting larger and larger and pressing more and more on my skull. It feels like a great big boil, all squishy and painful, and it's giving me a headache.
Though the headache may also be something to do with the degree of rage I am presently feeling.
Neurosurgery has not, of course, graced me with a visit. They merely came up and wrote a note on my file to say my platelets were too low to do surgery.
Now, yesterday afternoon, my platelets were 52. This level was deemed more than adequate to do the surgery on my chest to implant the double-lumen port, but neurosurgery wants a level of 100. So yesterday I had 4 units of platelets, which brought me up to 77. Still too low, they said. So I had 4 more units. By this morning, my platelet level was 84.
I'm now in a conundrum. The cancer is very active indeed. Maybe so active that it eats platelets faster than they can pump them into me. I therefore can't qualify for neurosurgery, because my platelets are too low. But they can't start to treat the cancer until I have had the neurosurgery.
So it goes. Patient Services (Jefferson's version of Customer Relations), Case Management, Oncology and Old Doctor Tom Cobleigh and all are involved in trying to get an answer from the august and mythic Attending Neurosurgeon. He has been reverently referred to by each of the four Baby Neuro Docs who've been up to see me ("When will you have the procedure? I'll have to talk to The Attending"), but I've never seen the bugger, and nor has anyone on this floor.
I keep thinking it might be a real good idea to go home now, and tell Jefferson to call me if they ever find themselves organized to give me treatment for the cancer. It's over a week since the diagnosis, over two weeks since my first admission, and all I have to show for it is a scar where they took the lymph node, a tiny hole where they took the bone marrow, and a port in my left boob.
Call me picky, but this doesn't seem like *quite* enough to stay my cancer.Continue reading "Unhappy Interlude"
Hospital Week 2: Tuesday October 7
Rather than trying to catch up on the past two weeks -- I'll do that later -- I'm going to start blogging each day as it happens, as long as I can.
So, it's Tuesday morning, and I wake up wrapped in my lovely wine-coloured chenille throw with a view of dawn slowly lightening the sky from my lovely window.
The view doesn't *sound* inspiring; I can see part of a multi-storey 1960s style car park, half of an old fifteen storey yellow brick building and, thanks to the decrepit roof of a one storey building between the two, a whole raft of surprisingly substantial weed trees that sway in the wind and manage to look fresh and green amid the traffic and fumes. It occurs to me that my spirits have risen considerably since I moved into this room, with its natural light and view of the sky. It even has tiny grilles at the bottom of the windows, so I can open them at night and sleep in the cool air. Heaven! I wake in the mornings relaxed and rested and cheerful. (Well, I guess Atavan and Ambien don't hurt in this regard...)
So, it's eight already, and the night nurse forgot to come in and draw the three am blood we'd agreed on. Plus, they came in later than usual to draw blood (7.30 rather than 5am), and unaccountably, neurosurgery refuses to drill holes in my head until they have the blood results. Since even stat results take two hours in the middle of the evening, let alone during the morning blood work rush hour, I conclude that neurosurgery won't happen until at least 1.00pm. Sigh.
I'm already thirsty -- yesterday's general anaesthetic gave me a sore throat from the airway tube they stuff down your windpipe, and I'd love to soothe it with a trickle of ice cold water.... It's a saaaaad day, I tell you, when you look forward to your pills because they allow you a sip of water.
Poor, poor me.
Some of the whingeing is because thinking to yourself "Today's the day I have neurosurgery!" ain't one of those things you think with a frisson of joy and excitement. Even the alternative; "Today's the day they drill a hole in my skull and push a long tube down into my brain!" doesn't seem to offer much comfort.
Heigh ho. More later, after something has actually happened. As of now, I can't even discuss fascinating topics like the colour of today's JellO, because I'm npo.
October 06, 2003
Hospital Week 1: Hurry Up and Wait
Week 1 of hospital was pretty much occupied with two things -- surgery to place the double lumen port in my chest so the chemo can go lickety split straight towards my heart, and hitting me over the head with a large enough chemical brick to allow me to tolerate getting a FREAKING TERRIFYING MRI.
Port placement was not too eventful. The anaesthetist was able to find a vein without the three failed attempts it had taken prior to the previous procedure. The surgeons were affable and charming, although they all seemed to be wearing LLBean surgical hats, with labrador retrievers on them, and hunting scenes. For obscure reasons, this worried me.
They decided to do the port placement without a general anaesthetic, instead using what they call MAC sleep -- a sort of semi-consciousness with amnesia to follow. (It strikes me that this must leave the body with all sorts of trauma traces without the mind having any access to their source, but wotthehell, it's fast, cheap, low risk and the insurance companies doubtless love it.) Semi consciousness or not, I have no memory of the procedure whatsoever, and woke up without the post-operative sore throat you get from placement of an air tube.
Last thing before the surgery, the surgeon comes out and rather worriedly says, "Look, because you're so slim, I have to warn you the port will show more than it usually does. There'll be a distinct bump on your chest." I tell him that a bump on my chest will be the mildest of my upcoming aesthetic problems and drift off to sleep, patting his hand affectionately, liking being called "slim".
It's only when I wake up post-surgery that I realise "slim" was his euphemism for "very small breasted". Hrmph.
The second great big issue in this first week of hospital was the MRI. Four in the morning they call me up to give me a brain MRI. Give me an Atavan, wheel me up there.
And I balk.
I won't even go into the same room as that horrific coffin thing. I tell the attendant that there's a fair chance I'll be dead before too long anyway, I certainly don't need to practice. In tones meant to be soothing (and it's admittedly hard to be soothing at 4am in a cold, neon-lit anteroom with a giant pulsating coffin next door), he says not to worry, they'll blindfold me and put earplugs in, and it'll all be over in forty minutes, no sweat. Somehow, this fails to reassure me.
It is at this moment entirely and starkly clear to me that if it comes down to a choice between death this week and the MRI now, death it is. It's not even a true choice – there is simply no way I will go into that thing while a fraction of consciousness remains.
Much abashed but still freaked, I get wheeled back to the unit. My nurse is a bit reproachful: I should have told him, he'd have pumped me full of IV Atavan. Fat chance. If I can move a whisker, I don’t go in that thing.
There begins a curious and protracted battle over the production of an MRI of my brane. I am sheepish and apologetic, feeling like I've proved myself a craven coward (well, in fact I have, to be blunt about it). My oncologist is telling me tall tales about a patient who was a veteran submarine captain who had to be completely anaesthetized to go in the MRI in an attempt to soothe my mortified feelings. Neurosurgery says they won't place the port unless I have an MRI done. The oncology nurse is phoning around to get me an appointment in the open MRI, which is half a block up the street.
Mirabile dictu, on Tuesday night she twists a couple of arms and gets an appointment for 8.30 Thursday morning. But there's a new policy in place: too many hospital departments have been dumping deathly ill patients on this profit centre (oops, I mean "department"), and they aren't equipped to do patient care. So they now require the presence of an RN or MD from the patient's unit for the entire appointment, which can last up to half a day. At this, there is an instant face-off between Nursing and Medicine. Nursing says, (and I think they have the right of it) that they're short-staffed, they have 24 patients, two of whom are extremely high maintenance (nope, neither of them is me, despite my MRI performance), and to lose an RN for half a day would be to quarter their staff levels. The Resident in charge of the Interns says that Thursday mornings are grand rounds and that's her doctors' "one educational opportunity".
At this point I lose it with the doctor. I tell her that a half day out of a multi-year education for one M.D. doesn't, in my view, exactly measure up to putting off placement of the port and hence chemotherapy for someone with a highly aggressive cancer. I tell her that it appears that her priorities are to satisfy the bureaucracy first, medical education second, and her patient's health last, and I find this completely unacceptable. She, who is fundamentally a really nice woman caught between a rock and a harridan, backs down and goes to the RN and says OK, let's do it, and a med student can accompany me. RN phones Open MRI office. Too late – we hesitated, and they have filled the appointment. Nothing now until the following Tuesday.
So now they go back to the thought of doing the closed MRI with anaesthesia, and I've gone from shrieking stridently to whimpering fearfully. I keep telling them there's no way I'm going to get into that thing if I'm conscious. Meanwhile, the MRI folks are sniffing that they gave me an emergency appointment before and I refused it, and my name is now at the Bottom of the List. More negotiations ensue, thanks to the admirable oncology nurse.
Bottom line: I'm to have MAC sleep again ("Just don't let me wake up in that thing", I keep saying, clawing at passing anaesthetists like the Ancient Mariner) and the MRI ghods have agreed to let me go up there first thing on Monday morning, with the thought that Neurosurgery will have nice holiday snaps of my brane and can place the Omaya port that afternoon.
Primed with an Atavan, I'm wheeled up to the MRI suite on a gurney. Might as well have been a tumbril. The bedside anaesthetist had said he would use MAC sleep, but the MRIside anaesthetist says airily, "That never works too well. I'm going to give you a general". He keeps reassuring me how he'll be able to monitor me and will know *instantly* if I stop breathing, which fails utterly to speak to my real concern. Namely, whether he will know *instantly* if I start to come round. But they at least have the consummate tact to wheel me in to the MRI room head first, so I don't see the Dreadful Coffin.
So. I wake up, sore throat from the airway tube thingie they place down your throat, and it's done. I'm thirsty as hell, of course (npo since midnight and it's now about eleven am and I'm dehydrated), but it's a small price to pay for getting my brane screwed around with by neurosurgeons, so we can Get This Show On The Road. So back in my room, I watch the lunch cart pass me by with hardly a whimper.
After a while, I begin to ask when the surgery is scheduled. "Not sure. Waiting to hear from Neurosurgery." Still waiting at 1.00. At 1.30. At 2.00. At 2.30.... Finally at around 3.30, Dr. Puppy slinks in, looking like he's about to be kicked (and he is). He begins to babble that the surgery isn't in fact going to happen today. "Ummmm. Tomorrow! They're going to install the port tomorrow! Tomorrow morning! One of the neurosurgeons has a vacation day today and they're having to double up. And in neurosurgery you get people coming in from Emergency with trauma, with their heads all smashed in, and it's not something that can wait." Flinching, he backs out of my room.
Ah well. I got up, poured myself a large cranberry juice and water and drank thirstily. And after a fight with the kitchen, which was intent on keeping me npo, I even got supper.
September 30, 2003
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.
Hospital 2: Ready, steady....um....
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.
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
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.
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.
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.
September 05, 2003
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.