Friday, June 18, 2010
I really must start updating this more often so that it doesn't just become a running commentary on what's wrong with me week by week and I can do some rambling about actual topics and stuff. Like prayer. I have so many people praying for me constantly, and not just my family and the people at my church but people I never met before. It makes me feel so grateful, because I don't see prayer as a last resort kind of thing, I really do have faith that God listens to and answers prayers. I've had lots of little answers to my prayers during this whole ordeal. I figure with enough prayers and faith I can get the miracle I need to get better. With the amount of prayers being said for me, I imagine the situation to be kind of like that episode of The Simpsons - all of us down here are Bart and Lisa asking "Will you take us to Mt Splashmore? Will you take us to Mt Splashmore? Will you take us to Mt Splashmore?" and God is Homer who will eventually give in and take us. Hmmm, that kind of puts me in the mood to go on a waterslide. I'll put it on my list of things to do when I get better.
So, now that I've had my little kooky religious moment, here's what's wrong with me this week:
I was admitted to Gosford Hospital last Monday and due to start my chemo on Tuesday. Unfortunately since leaving hospital the last time my abdomen had swollen up to several times its normal size. I'm talking eight months pregnant size (that's no exaggeration, Mum had to buy me new clothes that fit and some of them came from the maternity section). As it turns out, the cancer cells have spread down to my belly now and are making it all fluidy like my lungs. My friend who works as an oncology nurse (very conveniently) suggested that I ask to have the fluid drained from my stomach before starting chemo because they wouldn't do it for a week once I'd had the chemo. The doctors agreed, so I spent all of Tuesday waiting to go down for an ultrasound and drain, only to be abruptly informed by the radiologist that the fluid was separated into too many separate "pockets" and therefore couldn't be drained. I was pretty upset by that, because it's really uncomfortable, it makes it even harder to do things for myself and I'm stuck with it for at least the next two months until the chemo possibly starts working. Thankfully to compensate for this new bit of crapness in my life, something finally went right: the chemo went pretty smoothly and the side effects weren't too awful, just a bit of fatigue. I shouldn't get too cocky though, because they did give me a lower dose just to be on the safe side, so I'm still going to be prepared for it to be worse next round. But anyway, it was nice to have something go the way it was supposed to for once. And I guess there's even an upside to the giant swollen belly - I'm too big to fit any of my old pyjamas, so I got Mum to buy me a whole bunch of those giant T-shirt nighties from Kmart. You know the ones that have the hilariously daggy slogans printed on them? My favourite is the one pictured above. It makes me feel like I'm wearing a lolcat.
So that's what's wrong with me this week. What's right with me? My little sister came home from college yesterday, so she'll be doing a lot of my caring for the next couple of weeks. So now we can play Scrabble online while sitting in the same room and watch Better Homes and Gardens together on Friday nights. Sisters are awesome. Oh and she got home in time to celebrate my little brother, Liam's birthday. It was a fairly entertaining evening that went kind of like this:
Mum and Courtney, Liam's girfriend, light all of the candles in the kitchen. Courtney picks up the cake and begins to carry it over to me, on the couch. I start flailing my arms and yelling "No, no I can't be near that, my oxygen will explode!". The rest of the family gather in the kitchen with the cake and begin singing Happy Birthday. Before they can finish the song, Mum and Dad dash to the pantry to stop what looks like something burning but turns out to be the kettle. Both try to restart the song with no success before Dad asks "Who's birthday is it anyway? Liam? Oh, happy birthday Liam. I thought it was Courtney's. I wondered why you were singing to yourself." Everyone has a good laugh and Dad goes to bed early out of embarrassment. Fun times.
Sunday, June 6, 2010
So, when I last posted I was still in Westmead waiting for my head to shrink back to its normal size and for the doctors to decide what was going to happen. Thankfully I didn't have to wait too long for the head shrinkage to happen. I did have to wait until the end of the month before a plethora of debating doctors finally decided what to do with me: start a round of chemo while I was still in hospital and send me home a few days later with blood thinners to break up the clot. I have pledged to marry (or at least dedicate a day out of every year to the worship of) the haemotologist who decided that my port-a-cath was safe to use, because it will make it so much easier to keep going with the chemo (well that was the plan anyway. As usual, it's not the way things have turned out) because otherwise I would have had to rely on my one remaining "accessible" vein, and getting a needle in there is like, well trying to get something to fit where it won't - you can choose your own metaphor: camel through the eye of a needle, square peg round hole, my grotesquely swollen lymphodematic legs into their compression stockings.
When I came home, my parents had converted their own bedroom into a fully fitted out sickroom. They put an elevator under the mattress so that I can sleep sitting up, a shower chair in the bathroom and a wheelchair for getting around outside the house. I feel bad about stealing my parents' room, but the truth is I'm grateful not to have to walk so far to the bathroom because it is kind of an effort. Showering and dressing for me has about the same effect as a hardcore one-hour workout. When mum first suggested moving into her room, my first instinct was to say no, but I think I've finally realised that at this point in my life I need to give up the idea of independence and accept the fact that I need to be looked after. I'd hoped not to reach this point until I was in my 80s, but here I am.
After a few days of being at home and my breathing getting bad enough to stop me sleeping more than a couple of hours a night, I headed down to Westmead for my second lot of chemo. The doctor gave me some liquid morphine to try and help with the breathing and therefore the sleeping, but things kept getting worse. The thing with me is though, I feel so crappy most of the time that it's hard for me to notice when my condition deteriorates from general cancer crappy to hospitalisation-level crappy. Thankfully after watching me nurse a bleeding nose and struggle to breathe or move for a few hours, my mum's friend who'd been looking after me during the day recognised that I needed to be around medical-type people. As soon as she said it, I realised that I didn't have the strength to walk. When I got to hospital it was kind of cool to find that my ER doctor was a girl I went to high school with. Or at least it would have been cool if we didn't have to meet each other again while my nose was being packed with gauze and I was being pumped full of blood and platelets. Apparently what happened was that the chemotherapy, as well as killing the cancer, also tried to kill my blood. I spent two and a half weeks in Gosford Hospital while the doctors got all my blood levels back to normal. While I was in Gosford I got to know the oncologist a bit and he seems good, so I've transferred my care from Westmead to here, just to save on travel and make things easier on me and the people who have to drive me places. Plus it's a lot easier for me to be at Gosford if I need to be in hospital, being closer to home and also the fact that they let me have a carer stay with me overnight, which I was pretty grateful for, because even though my mum drives me crazy by asking pointless questions and taking forever to get ready for bed, it really was comforting to have her there, especially the first few nights when I felt like death.
So now I'm back home, with an oxygen machine which makes life a little more comfortable (I have yet to name my new gaseous friend - open to suggestions). I'm heading back into hospital tomorrow to start a new chemotherapy program. The doctors weren't happy with the way the last one was going, so they're hoping this one will work better. They're going to poison me as an in-patient this time so that they can keep an eye on me and make sure that I don't wind up with severely broken blood again. While I'm not thrilled at the prospect of another week of paying $5 a day for bad daytime TV and eating powdered mashed potato, it's probably for the best. Since the oncology ward is the land that internet forgot, I won't be updating again for a while. There's so much more I want to write, so hopefully this new drug won't knock me around too badly so I'll have enough mind grapes left to post again when I get out. And I'll try and refrain from playing Bejewelled.
Sunday, April 18, 2010
Now that I've subjected you to a very large and confusing paragraph of self-pity, I should probably fill you in on what's actually happening. I was discharged from the San on Tuesday, almost two weeks after the surgery that was supposed to get rid of the fluid from my lungs for good and give me one less thing to worry about (it didn't - I've started getting fluidy again). I spent a nice afternoon/evening eating non-hospital food and wearing clothes that weren't pyjamas before curling up in my soft non-hospital bed to get a good night's sleep before I had to go to chemo the next morning. I never made it to chemo, because I woke up in the morning very confused and with my neck so swollen it was pressing my throat closed. My arms and hands were almost twice their normal size. I made my way to the mirror and tried not to panic when I saw the grotesquely swollen face staring back at me through eyes that couldn't open more than halfway. I burst into my sister's room and squeaked out through my constricted airway that I needed to go to hospital. She broke several speed and traffic laws to get me to the Wyong Emergency Department, where I spent the next 15 hours. At first they thought I must have had an allergic reaction to something, so they stabbed me with two ineffective adrenaline injections before sending me for a CT scan and finding out that I had another blood clot, this time near my port-a-cath, which is an implant under my skin for needles to go into that's meant to stop my veins from being over-used (it has not achieved this - I have the veins of a 90-year-old junky). This of course was quite upsetting because it instantly conjured up images of surgery, trying to do chemo without a port-a-cath and being on blood thinners for the rest of my life. But what really sent me into full-on breakdown mode was the doctor coming to take yet another blood test from my ridiculously swollen arm, taking my total number of stabbings for the day up to eight. Cue sobbing and and hyperventilating. I spent the next two days at Wyong waiting to be transferred to Westmead because my oncologist wanted me down there. Not that it makes that much difference; there's more doctors here but they still can't figure out quite what to do with me. So now all there is to do is play the waiting game and watch as many episodes of The Simpsons as humanly possible.
Pretty much as soon as I was admitted to hospital, my goal was to be seen by as few people as possible because the swelling makes me feel very much like a sideshow freak. Unfortunately that turned out to be difficult at Wyong Hospital - I didn't realise how many people I knew that worked there, but they all managed to find me within the first 24 hours. It's a lot easier to manage at Westmead with my parents acting as gatekeepers. Unfortunately I will have to go home sooner or later, and with my last blood clot it took about six weeks for my swollen arm to start looking remotely normal again, and this time it's so much more of me that's swollen so I don't know how long it'll take - but I fully intend on not leaving my house for that period of time (except maybe for chemo). I know it seems silly and superficial to care so much about my appearence, but seriously, to go overnight from feeling somewhat normal to looking in the mirror and seeing a face that isn't yours and having hands so swollen that you can't hold a knife and fork properly is bound to mess with the head.
Tuesday, April 6, 2010
I’m getting pretty adept at being a hospital patient, this being my fifth stay in less than a year. I’ve been in a different hospital each time - it’s like I’m writing a travel guide to the hospitals of Sydney and the Central Coast. So far I’m giving the San four stars because the food is good, I have a private room and everyone is so happy all the time because they’re high on Jebus. Actually I’m going to give them an extra half a star for agreeing to sedate me whenever I ask.
Everyone has been pitying me for having to stay in hospital over the long weekend, but it’s really not so bad. There are some good things about hospitalization, like people bringing you meals, or getting to sit down while you shower (all the laziness of a bath without the grossness of soaking in your own filth). There are also a lot of ways to stay entertained in here besides morphine:
#1 Make lame jokes during your towel bath, just to make things a little more awkward.
#2 Collect medicine cups. Become distressed when anyone tries to throw them out. Last time I got 27.
#3 Bond with the nursing and food delivery staff. Reality TV can help with this:
Sample Conversation Re: The Biggest Loser
Nurse: Is it the weigh-in tonight?
Kea: Yeah, I can’t believe how skinny they are now! But won’t their skin be really stretched out from losing all that weight so quickly?
Nurse: Oh yeah, they’d definitely need to have some surgery to fix that. Especially Shannon.
Kea: He lost 8.2 kilos this week - I wish I could lose that much weight at all.
Nurse: Who do you think will get eliminated?
Kea: Well Lisa’s the bigger threat because she has more weight to lose, but she does have that injury…
There. Friends for life!
#4 Use medical supplies to make clothes for any soft toys brought in by visitors. Pose them in amusing positions.
Between this and sleeping, eating, watching TV, whinging about my ailments to my visitors and taking lots of painkillers, the time goes pretty quickly. In fact, if I had a job this would be a pretty decent (if slightly painful) holiday.
Tuesday, March 30, 2010
Step 1: Eating Plan
Pump yourself full of cytotoxic drugs once a week. This should reduce your appetite, enabling you to follow this simple, streamlined eating plan.
Breakfast: 1 Weetbix with milk. Eat half and throw the rest away. 1 glass of juice with medication.
Lunch: 1 piece of toast. If you’re feeling dehydrated because the drugs make water taste repulsive, try masking it with cordial.
Dinner: Make a pitiful face until someone in your family agrees to make you a salad. If you have developed a sudden intolerance to food with flavour, salad can be substituted with a small bowl of unsalted mashed potato.
Step 2: Exercise
The fatigue from the chemo drugs should prevent you from doing anything resembling exercise. This will cause your muscles to degenerate, resulting in extra weight loss. You can boost your anti-exercise potential by filling up your chest cavity with fluid. This will prevent your lungs from working, limiting your range of movement to within 10 metres of the bed/couch.
Step 3: Extra Tips
If you’re really dedicated to the Chemo Diet, you can further reduce your food intake by mixing your chemotherapy drugs with blood thinners. This will result in severe nosebleeds, physically preventing you from eating for hours at a time. Even if you manage to get the food in your mouth, developing a weird psychological tic that makes you vomit whenever you get stressed will reduce the amount of kilojoules you absorb.
By following this revolutionary diet, you can be on your way to looking sickly thin today!
Coming up next...
The next entry will really be coming to you live from hospital - it’s time for more lung surgery. While the thought of being intubated and spending more time in hospital makes me want to reflex vomit, the thought of continuing to get needles in my chest every week to drain the fluid out is slightly more distressing. Plus my surgeon is awesome and rides a motorbike, so I’m going to do what he tells me.
Wednesday, March 24, 2010
Yes, I did just see Alice in Wonderland and I liked it. I’m not sure why the reviews have all been so bad. It’s possible that I was distracted from flaws in the plot/script by all of the shiny colours/Alice’s pretty clothes/Johnny Depp’s frequently changing accent, but I was entertained.
So, I’m coming to you live from Westmead Cancer Care Centre. Well, it’s not actually live to tell you the truth, because the CCC is located in the bowels of the hospital, somewhere between the incinerator and the dungeon, so there’s no internet access down here. But I did bring my laptop in so I can type this up and post it later. Okay, that’s also a lie. I was too lazy to drag my laptop in here when it wasn’t to watch Twilight (more about this obvious lapse in good judgement/taste in a later post) or How I Met Your Mother DVDs. So today I’m doing things the old school way and scribbling in a notebook propped up on my makeshift pillow-desk. I have recently become aware that in the wider world, pillows are being used for many functions unrelated to sleeping, such as stylish headwear, creepy celebrity obsessions or even life partnership. Increased interest in pillows is a possible side-effect of the extra time spent in bed due to surgery/chemo. I should research this. Or better yet, convince one of my friends already in the medical field to go back to uni and do it as a Phd thesis. Guaranteed Nobel prize right there.
As you can see from the above, chemo has already started turning my brain mushy.
The past week in Chemoland has had more than its usual ups and downs. The extra bumps don’t really help with the nausea. I guess I’m a bit more aware of things with this first cycle as well because I’m comparing all of the similarities and differences between this lot of chemo and the last one. Some of the differences are good e.g. not having to spend as much time in the CCC, not having a chemo pump attached to me for two weeks at a time, and the fact that these chemo side-effects feel more like what I imagine a hangover would be like and less like being drowned in a vat of poison.
Despite being told by several medical professionals that things would be better this time around, and spending weeks repeating this assertion to myself and everyone around me, when the morning of my first dose came, I got so anxious about starting the whole process again that I threw up in my grandma’s car about ten minutes into the drive to Sydney (apparently now I’m an anxious vomiter, so that’s new). Unfortunately she didn’t have any plastic bags in the car, so I had to tip her bag of lollies out into the glovebox so I could throw up into it. I promptly realised that the bag was leaking and had to stuff it with tissues until we reached the rest area where I attempted to clean myself up in a blue-lit unisex toilet that reeked of urine and trucker sweat. Omi, my awesome grandma, decided that a better option was to stop off at the shops and buy me a new T-shirt. She’s a smart lady.
Once we finally made it here things went very uneventfully. I didn’t feel too bad the day after the treatment. Clearly this was chemo’s sneaky plan to lull me into a false sense of security because the second day hit a bit harder, preventing me from consuming anything that wasn’t juice or mashed potatoes. But still, things weren’t going too badly until I woke up on Saturday morning and realised that I couldn’t walk from my bedroom to the kitchen without sounding like I was having an asthma attack, so I had to go to the hospital and have another three litres of fluid drained out of my chest so I could breathe again. Hospitals are slow places at the best of times, but because it was Saturday, this process took about 30 hours, so that was how I spent my weekend. It’s my own fault really, because I’d planned to meet some friends for dinner and whenever I make such plans I end up hospitalised. Last year when I tried to go to my friend Nat’s housewarming and to the Mexican film festival with Gab, I missed both events because I got trapped in Wyong Hospital with a blood clot. This time I’ve learned my lesson: I am clearly not supposed to have a social life, but should confine myself to my house, keep myself company with hundreds of cats and venture forth only for doctors’ appointments and to hurl my cats at passing schoolchildren.