Wednesday 22nd January, 2014
8.30AM Coffee and muesli
There is silence and almost perfect stillness outside. The cicadas are quiet…absolutely quiet, which is rather odd. Depending on how you feel about the sound of cicardas, there has either been this constant deafening siren blaring throughout my time at Palm Beach or the rhythmic chant of an Australian summer. I have always loved the cicadas and always have to pick them up and feel them walk up my clothes with their sharp claws. I get an absolute thrill even now at the more mature age of 44 when I manage to spot one and pick it up and hear a loud protesting buzz. While I’ve been here, I have also been something of a cicada rescue service. Only this morning, I spotted one out on the balcony under the gaze of a feral Noisy Minor bird and moved it on. The silly thing was just sitting there completely paralysed as though you couldn’t see it. Hello! Unfortunately, the cicada on the window sill wasn’t quite so blessed. It’s been captured in a spider’s web and mummified in silk.
There was heavy rain last night. The dog is soaked and the canvas outside has been painted a very dull grey. I don’t know whether the tide is going in or out. I should. I just don’t seem to have that knack of looking out there and instinctively knowing. No doubt I could probably work it out but when I check back soon, I’ll find out anyway.
I feel like I am on very borrowed time today. It is the last day before my last chemo treatment. Tomorrow, I am also finally meeting up with my rheumatologist to not only find out what happens next but also get the verdict. Hopefully, it won’t just be a V for verdict but also V for Victory. Oh how I would love a V for victory! I have had so many serious scares with this disease and so far we’ve been able to fight them off and win. It really has been a very long bombing campaign with me scampering along the ground running for cover or like the people of England sheltering in the tube during the London Blitz, bunkering down and staying out of sight.
To be perfectly honest, I haven’t really been thinking about getting my results all that much. I’ve been really focused on my writing as I have been mega inspired and trying to get all that written down has been a massive job. I am working on a diarised account of my chemo experience, which ironically is intended to be a funny book. When I first considered making it funny, I was rather sceptical. “As if!” Here was this hellish experience of having all-consuming nausea and throwing your guts up not to mention overwhelming gripping fatigue. I just expected to spend summer in between lying in bed upstairs with the air-conditioner on and rushing to throw up in the loo. Obviously, not very attractive postcards from Palm Beach but it was only six weeks and such a short blip in my life that it was nothing…as long as the chemo worked.
At times, I have almost forgotten or put aside the fact that I am having the chemo for a purpose. The purpose isn’t to survive chemo and to get through the treatment, although in this instance you would definitely say that is secondary goal. Chemo is toxic, nasty and in itself can knock you off. The real goal is to gain control of the dermatomyositis as my lung specialist would say and get me into remission again.
However, this is the incredibly scary part because that is only something we can influence. We can’t control it. That has been proven time and time again when this wretched disease flares up yet again and reasserts its dominance. Reminds me perhaps that while it might not be the boss, it has aspirations! Yet, I’m a fighter. I’m the quintessential Aussie battler. When I said that I would do anything for love and I would fight this disease with absolutely everything I’ve got and more, wretched Dermie didn’t know who he was up against. He has to deal with Roweeee. That’s Roweeee with four eeee’s swinging from the chandelier like Tarzan. I am going to win…at least I jolly well hope so!
The trouble with fighting this auto-immune disease is that I am actually fighting myself. An auto-immune disease develops when your body attacks itself so it is actually you fighting yourself. Now, the trouble is that when you are fighting yourself, you are evenly matched. I’m no expert in military strategies but it seems like I am never going to win in any kind of hand-to-hand combat. We are evenly matched. My only hope is some kind of very unconventional, surprise guerrilla attack. Or perhaps by blending in really well with my surrounds and just quietly disappearing. You know those games of hide and seek where the child hides so well that everyone else has given up trying to find them and they’ve moved onto something else and Mum is just about to call the Police when they finally poke their little head out again.
However, most of these manoeuvres are out of my hands. My rheumatologist is the Commander-in-Chief assisted by the lung specialist. I am sure they are not acting in isolation either and have consulted other world experts in dermatomyositis. Given how rare this thing is, that’s hardly a huge effort. There is a Myositis Clinic at John Hopkins in the States and you would expect doctors to confer and gather data on this rare disease. We all need to do whatever we can to make it easier for those who are following in our wavering footsteps.
I am finding it particularly helpful to write about my chemo experience. I am not just doing this for myself and to fulfil my long held goal and need to get a jolly book actually published but I’m doing this to help others and to be their chemo friend. You really do need someone to chat away and talk to or at least I do and you’re not always well enough for visitors and to actually talk. It’s more a case of chatting away in your head which means you’re not going through this thing alone. You have a friend. I don’t even really know who I am talking to as I write. When I was in high school, I had a diary and it was addressed to Dear Anne as in Anne Frank who wrote her experiences of being a Jewish teenager in hiding to “Dear Kitty”. Of course, this mystical diary person understands absolutely everything you are going through without query or judgement. I can see them sitting there on the edge of the couch with a cup and saucer in hand intently listening to each and every word I say.
Of course, this journal world is so different to the real world. For starters, I am alone down here at Palm Beach. I have no one to talk to. Correction…I have the dog. While I must say that he makes almost the perfect companion and is one of the best listeners I’ve ever come across, there are certain distinct differences that I really can’t overlook. The dog is a dog and even if I do connect with him emotionally and know that he gets me, he can’t be my perfect companion. He’s not allowed in the house and he’s not allowed at the beach either. He is actually rather restricted.
Instead, I find myself chatting in my head and writing in my journal and my blog. My brain is rather hyperactive constantly beavering away. I am so very inspired and no doubt a bit manic from all the prednisone. It might be destroying my bones but it’s powering up my mind!
Back to tomorrow.
Tomorrow is V-Day. V for verdict and hopefully V for victory. After exploring Beethoven and having my healing Reiki experience and photographing waves at Whale Beach, I really need to focus and psych myself up for tomorrow. What will it all mean?
These are the three outcomes:
- CK reading is back under 200. The treatment has worked!
- My CK reading has come down somewhat but isn’t in remission and the treatment has been partially successful. I guess here we’d be looking at a reading in the range of 300-600.
- It hasn’t worked and my CK reading is over 600.
Of course, I would love the treatment to work! I would love to be in remission! I would love to send Dermie running to the hills lugging his heavy cases and watching his clothes tumbling out along the beach behind him. I would dearly love Dermie to get well and truly lost never to return. Oh please no one give him a compass! I don’t want him back!! No! No! No! No! No!
But we’re not living in a perfect world. Although I have made a conscious decision not to look up the stats on this treatment, I know that it is not 100% guaranteed. I know not everyone responds. There is a gap and it is a significant gap and I also know that I have a fairly aggressive and very persistent form of the disease. As I said, I am fighting myself and I’m one hell of a fighter! I don’t know what I’m going to do if it hasn’t worked. Oh yes I do. I’m going to cry! I’m going to cry and cry and cry and cry until my tears fill up the bay. Then I’ll fight back. Keep going. Persevere. We’re going to get this disease even if it gets me first.
By the way, the tide is coming in. I didn’t need special tide reading skills after all. I just had to wait.
I just rang Geoff to see whether he thought I should ring my GP for my results.
In a way it made good logical sense to get the results today to see whether Geoff should take time off to go to my appointment with Professor tomorrow. Plan ahead. I also probably preferred the idea of getting bad news in the privacy of home when I could become a blubbering mess without having to try to keep it together. I know hospitals are places of sickness and dying and that it is perfectly acceptable to fall apart there but even in the midst of utter sadness and heartache, I’ve still wanted to keep it together. I have dreadful memories of clutching my one and only tissue while praying in the hospital chapel. Naturally, that one and only tissue couldn’t handle the job. It was like the little boy with his finger in the dyke…totally overwhelmed. I remember trying to fix myself up enough to bolt into the hospital toilets and then went into the Pink Ladies and bought a packet of tissues. It was funny because the lady said something about hayfever being bad this time of year and I don’t know whether she was just helping me save face or whether I’d fooled her completely.
How stupid of me! There I was a mother of two young children staring death in the face and I’m trying to keep up appearances. Trying to stop the jolly dam from flooding when I really just needed to cry and that was fine. Even in that darkest of dark hours, I was trying to be strong. Stand tall. Stitch myself back together and not fall apart. In a sense, these are good qualities especially for a fighter. You have to dust yourself off and get back into battle again. You can’t afford to lie face down in the mud or the enemy will get you for sure!!
That said, it is quite permissible and indeed perhaps required that you have a break so your wounds can heal. You rest and renew your strength so that you are better equipped to fight. No point dragging yourself into battle. You’ll never be able to swing your sword.
So far I have only mentioned my doctors in terms my combat team but it is a multi-disciplinary team assault. I am seriously praying that God will heal me using whatever means. He is really the ultimate Commander-in-Chief. He is the one who decides whether I live or die although I do actually believe that he has given me quite a lot of say. I didn’t have to go and get that first CT scan of my lungs two years ago. I didn’t really have symptoms of Institial Lung Disease (ILD) at the time. I had read an article recommended by the Myositis Association of America which said that ILD was more common in myositis patients than previously believed. I have the JO1 antibody which means that I am more at risk of developing ILD so I was already forewarned. I also knew that with any problem, you are best hitting it early to get the best possible outcome. That’s the old stitch in time saves nine approach. Those CT scans were devastating because my very worst fears were confirmed. I had ILD. However, the good news was that it wasn’t active and it was minor. I was safe…at least for now. The other good news was that we were well prepared if and when it went nasty. I now had a lung specialist who knew me and the disease and he also worked with my rheumatologist. I had a team. So when the CT scans showed that the ILD had progressed and had become “established”, I already had a team in place. They met. Worked out the best approach and bang it happened straight away inspite of Christmas and the fact that nothing even happens in Australia in January. We were onto it.
At the same time I’ve been having chemo and zapping my body, I have also been exercising. I’ve been swimming 20 laps of the pool around 4 days a week. I really don’t like getting wet and I do enjoy it once I’m in but this isn’t something I like. It is something that’s a conscious grudge effort. I do it because I am trying to get the very best out of whatever good parts are left in my lungs. I am focusing on the cells which work, not on the cells which don’t. I really don’t know enough about how lung cells work and I know there’s scarring and they talk about the fibrosis being permanent. Yet, at the same time, I think about trumpet players and swimmers and I’m not sure whether they actually have scientifically proven bigger lungs but that’s the impression I have. You hear about all those Olympic swimmers who started out swimming to improve their asthma and it works. Geoff’s uncle Claude was told he was going to die from lung disease. He was a smoker and he quit immediately and survived that crisis.
When I think about the statistics, I am trying to think of what I can do to get myself down the winning end of the equation. Somebody is going to die very quickly from this disease and someone else is going to respond brilliantly to treatment and go into a 100% perfect remission and never hear from this wretched disease ever again. How do I give myself the very best chance of being the winner and having my V for victory? What can I do? Me as a small, seemingly insignificant untrained individual…what can I do?
Probably the very most important thing I can do is own my disease and take responsibility for it. I routinely monitor my CK levels so I know where I stand. I don’t just walk away and leave my disease to manage itself. I don’t turn my back and say “I don’t want to know”. I am checking. The frequency of these checks changes depending on the results. I’ve had quarterly blood tests and I’ve had them weekly but I’ve had them. They keep me informed and keep my medical team in some kind of “control”.
If you have read my blog, there a story on there about kayaking and how maintaining your goal takes constant monitoring and correction. That you just can’t let the kayak drift or you’ll have to expend alot of energy to get back on course.
That’s what it is like with this disease.
Taking responsibility also means that I know my own blood test results and I file my reports. I have a bit of a mental picture of how things have gone over time and what has been the most likely trigger for my flares. So far it appears that the prednisone can’t go below 10mg and flus and cold don’t help either.
Doing whatever it takes to maintain a positive mental attitude. You really need to be in peak mental shape to fight a chronic, long term life-threatening disease especially when you have a husband and little kids and a Mum, Dad, brother, Aunties, Uncles, sister-in-laws, nephews, nieces, cousins, friends.
Since I’ve been having the chemo, I’ve pictured like a set of scales. Bad stuff on one side and good stuff on the other. The more bad stuff which piles up, the more good stuff you need to do to counter balance it. So when it came to me and the chemo, I asked my Dad if I could stay at the beach house throughout to give myself the very best chance of getting through it emotionally and spiritually. I’m a big fan of distraction and with chemo you’re not allowed out in the sun and I figured I’d be pretty crook but I thought I could sit inside and watch the pelican glide back and forth hunting for fish. Watch the ducks. They’re always a bit of fun. There was also the pure smooth serenity of the water not quite sitting still but gently flowing somewhere and the variations between high and low tides.
Being here gave me a huge, massive psychological edge versus being at home which has borne the brunt of 8 years of chronic illness, medical appointments and just plain discouragement. As much as I could have used this time to get the house sorted out. Decluttered and had the kids will organised for school, I needed to get as far away from all of that for my own well being as I could. I didn’t need to be immersed in problems. Crap and all the thing which needed to done while I’m trying to heal my body and mind. I needed to be kind to myself.
Unfortunately, the rest of the team hasn’t had that luxury. Geoff had last week off work and spent the week down here. He returned home Monday night to find that the fish tank had leaked on the carpet. He is still battling with the car which has had endless troubles over the last couple of months and stupid problems at that. The Christmas tree is still up with no sign of coming down and then there’s work. Meanwhile, my parents have the kids. My Mum’s not well. My brother’s not well. Dad is starting to notice rheumatoid arthritis moving into one of his fingers and it is rapidly starting to twist. Dad is running his own business while helping to watch the kids. Yesterday, Mum had some pre-schedule dentist appointment so Dad had the kids and he took Miss off to the dentist because one of her baby teeth had fallen out some time ago and there was no sign of the adult tooth. I found it hard to believe that in the midst of my chemo treatment that we’d find out that Amelia was missing a tooth but that is a bit of a family thing. Fortunately, that was fine. It is just taking its time and Amelia was proudly showing off the dental floss she’d been given.
I have to admit that I don’t think the rest of the team was thrilled when I mentioned that I’d had a healing massage and had been watching the waves. Talk about luxury self indulgence!
This just goes to show that there is quite a difference between what the person experiencing the problem goes through and the experiences of the support crew. It is like the duck. I am gliding almost effortlessly along the surface while the rest of the family are my feet madly paddling trying to keep me afloat. They are literally busting a gut so I can rest, relax, recuperate and take it easy. Now, I haven’t exactly been doing nothing and I am actually hoping that my writing will translate into some kind of income that can also keep our family afloat. As much as all this writing is cathartic, stimulating and fun, I do also view it as my job. The best chance I have of trying to earn a living. That’s right…a living not a dying!!
I am also making a mental note to self that the support crew needs a break and that we need to bring in the support crew for the support crew once we get home.
This list should be set up as more of a mind map than a numbered list. All of these factors are important.
Talking about the support crew, reminds me of the importance of the support crew. I would be dead on my own. No doubt about it!! I have had a GP who has seen me through this process and it really has been a difficult process for her. Rare diseases aren’t easy and everybody prefers to be in their comfort zones. Know what it is. Know what they’re doing. Rare disease aren’t like that. There is little precedent. It’s mostly unknown. She bends over backwards to help me and we often have a laugh despite my circumstances. She wants to be played by Kate Blanchett when my book finally becomes a movie. There is my wonderful specialist who has always taken an interest in my disease. He brought his students round to see me and he is fighting tooth and nail to give my kids their Mum. I only know both my specialists in a very small realm but I know they are good person and they would do whatever they can to save my life. We might and no doubt one day will ultimately lose the battle but they have given their all and then some. In addition to these medical people and my family which I’ve mentioned, I’ve had countless people pray for me and I’ve talked the ears off a few hospital chaplains and one of my dear Pastor who isn’t well himself right now. I have wonderful friends who have picked up the kids, cooked meals and listened. I have been incredibly blessed but at the same time, I still try to give. I don’t have a monopoly on adversary and back luck. Everybody has their cross to bear.
Distraction, otherwise known as “keeping busy” is also a wonderful thing. During this chemo experience, I have had various little projects. There has been my “teach the kids how to cook” project which has also turned into a real cooking expedition for me as I’ve extended my cooking beyond my usual chicken schnitzel and roast lamb. I’ve really been enjoying my weekly serve of Atlantic Salmon. It has also been an eye-opener to see the kids struggling with the grater and the peeler and realise that cooking is also building up their fine motor skills and confidence. Searching for recipes etc and putting my energy into this project certainly helped distract me from my treatment and whether I was going to live or die. It gave me a sense of purpose. I should have mentioned this sooner that the cooking project also brought the kids and I closer together and it was fabulous to not only spend time together but have this as a joint project. They both seem to enjoy cooking and largely embraced it.
While I have ignored my violin a bit while I’ve been here, I have actually kept up my piano practice and Fur Elise is progressing well. It has been very positive to put my energy into my practice and slowly but steadily notice significant improvement. Only two weeks ago, I was bumbling through the start of Moonlight Sonata and couldn’t play C major scale with hands together. My hands weren’t in synch and it took a couple of goes to get it right. That’s pretty humbling when you learned the piano for over ten years and while I know I haven’t practiced and virtually haven’t touched a piano in ten years and have maybe even avoided the piano entirely…shunned it…I never expected that I couldn’t play at all. That rusty would become rusted.
It’s been very therapeutic to tackle Fur Elise and through doing this daily practice, actually feeling that I can play the piano.
Mum has now actually suggested that I learn to play Chopin’s Revolutionary Attitude. I had to have a bit of a laugh at this because suddenly I’ve gone from struggling to play C Major Scale which is very definitely in the “elementary my dear Watson” category to being told I can take on a concert piece. It sounded crazy to me but there has been a precedent. Mum reminded me that as much as I don’t like to think of myself as a chip off the old block ie my Dad that Moonlight Sonata and Fur Elise are also his pieces. Not long after Mum and Dad were married, Dad apparently decided to teach himself how to play Chopin’s Revolutionary Attitude while his mother was away overseas and there was a big dinner and recital in their flat on her return.
If Dad can do it, I can do it!!
Another adventure begins. I hope Beethoven doesn’t mind. We have been what you’d call “exclusive” for quite some time.
You could also rebadge these distractions and call them goals…a sense of purpose…something to live for. Naturally, I have my kids and family, friends to live for but I also need something beyond that. Something that extends my skills and challenges me. Not that the kids aren’t challenging but even as a mother who is potentially dying and leaving her kids, I still need my own world…my own life and to extend and maintain my self and my own space and identity just like most other women. I just can not live and breathe for my kids especially as I may not die young at all and I still need to plan ahead and have a life…not just a death!
I’ve had various goals which have sustained me. Most notably, there was my goal to ski down Perisher’s front Valley which I pulled off last year. I did my preliminary violin exam and achieved my A. I’ve worked part-time and done the publicity for the school. I have also poured myself into the children and tried to help them reach their potential often in opposition to themselves. Goals are vitally important for maintaining that sense of purpose which helps get you over life’s speed humps and even steep mountains and doesn’t let you get bogged down in the mud.
Humour is an essential survival strategy. It is quite a common approach for someone going through severe adversity to turn it into a joke and laugh about their predicament…just like my chemo for Christmas. “All I want for Christmas is my chemo” I pictured a little girl singing all I want for Christmas is my two front teeth with her cute gappy smile and there I was not so small and cute wanting chemo.
Somehow you need to control the bad thoughts. My psychologist introduced me to the wonderful word: “catastrophising”. This is where you turn your bad news into a catastrophy of world-ending proportions like pumping up a balloon with hot air…off it goes. You setback has become a disaster. You’ll going to die. We’re all going to die. The entire planet is doomed!!!
Instead, you have to stop. Take a few deep breaths and consider things from a more realistic perspective. Is this situation really as hopeless as it seems? What, if anything, can I do to make things better? How likely is the worst case scenario? I am slowly getting better at this but it is a learned skill like anything else.
A problem shared is a problem halved. Talking things over with a friend really helps and keeping a journal is a great way of doing this as well particularly if you want to keep things private. Sharing a problem may not mean talking either. It might involve practical help. You don’t have to go it alone.
I just thought of this one but solving the problem is actually the best way out of any crisis. Now, my medical situation is more complicated but for others just getting on with it and not procrastinating is possible.
I should point out that while I’ve been tranquilly staring out to sea on one side of the house, the neighbours across the road have decided that my day of tranquillity the very last day before I have my last chemo treatment is the day that they whip out the chainsaw and atone for years of garden neglect. This is the only day this summer that the cicadas have been quiet and now the chainsaws are going. You’d have to agree that’s a bit odd. I just wandered out there in my pyjamas to give them one of those “I’m a %$@# shift worker. Stop the noise” glance. I would dearly love to go up to them and not so subtly point out that I am currently undergoing chemo and could you please keep the noise down. Oh my goodness that chainsaw is loud. If you have ever complained about cicadas, think again. These things are absolute beasts.
At the same time, that house across the road has been considerably overgrown. After I recovered from the pneumonia, I made a few jokes about what it was really like when Sleeping Beauty woke up. There had been an elderly couple there and the husband died after a long illness. It really did look like the place was returning to nature as the branches enfolded the house. Suppose it will be good for the street to get the place sorted but why did it have to do it today? Right now when I desperately need a nap. I didn’t sleep too well last night and I’m sagging badly falling head first into my laptop.
This sort of noise is one of the downsides of community…the cost.
I haven’t exactly finished this post as such but wanted to get it up today before I get my results and also before I have my last hit of chemo. It still needs work but I wanted to get it up.