Friday, November 30, 2012

I can see clearly now ...

Good evening, Day #31. Weeks ago the days were slowly trickling by, and Day 100 felt so far, far away. Now I am already a third of the way, and “kicking goals” to quote my doctor. If I wasn’t swallowing 20 pills a day, wearing wigs and scarves to cover my bald head and spending enough time in Royal Melbourne Hospital to know many people by name now, it would just feel like a regular summer. Health-wise I’m as strong as I can be – my organs are all functioning normally, I have no debilitating symptoms and even my energy levels are pretty good – I am far from housebound and enjoying the many things that North Melbourne and surrounding areas have to offer.

I am still required to visit the Royal Melbourne day centre three times a week for check-ups. Among the familiar faces are a diverse range of haematology cancer patients; some young but most of them old; many of them are post-transplant patients like me; some smiling, some sad; some with chemotherapy feeding into their veins, some with fluids, some falling asleep in their chairs; most with companions like partners or mothers. I am well-acquainted with day centres, having frequented them at London, Latrobe Valley, Peter Mac and now RMH for my various treatments. Sometimes they would be depressing places – you are often surrounded by some very sick people - and I would get this mild anxiety about having to sit in “the chair (morbidly, in my head I would associate it with an electric chair). Even though it is a place of healing, you are also having poisons injected into your body.

I have to say the RMH day centre is different though; it’s not such a bad place to be. I go there enough that everyone is familiar, and the staff are so upbeat; smiles and jokes abound. Quite often it’s a fleeting visit: the nurse performs the general observations, runs off a copy of my blood counts, then I have a brief chat with the doctor about anything that might be bothering me and I go on my merry way. Sometimes I have stay a couple of hours for an intravenous top-up of magnesium (the anti-rejection drug cyclosporin chews up my magnesium levels) or fluids. Soon though, these visits will be cut to twice a week which is a good sign. Next week I also get to lower my daily steroid dose which I am looking forward to because it’s hard to get a good night’s sleep on 35mg of Prednisolone a day. The steroids keep graft versus host disease in check (which I have had no symptoms of as yet) so it will be interesting to see what happens there.

It will still be some time until I find out whether the whole point of the transplant has been achieved and whether my new immune system, “the graft” has attacked the lymphoma cells. Building a new immune system is no small task and at the moment it’s barely clicked into first gear. It won’t be firing on all cylinders until another six months, and until then I still have to be careful in terms of infections (I can actually get measles, mumps and all that nasty stuff that most people are immunised against). I have a "baby immune system" as one nurse described it. My next PET scan will be around Day #60, some time after Christmas. Again this is too early to tell whether the graft vs lymphoma effect has taken place, it will simply be a surveillance exercise. All I can do for now is celebrate that I am feeling well and enjoy the glorious Melbourne summer and festive season that is unravelling around me.

Queen Victoria Night Markets ... I love Melbourne in summer

And I can’t believe how at peace I feel. 2012 has by no means been an easy year which has taken to me some of the darkest places of my life. But right now I feel I have come so far and grown into the person that I want to be. I just have to wait for my body to catch up and heal to complete the picture. It's been a year since I returned from London and I still find myself in limbo; unable to get back to work, get back on my feet and regain my independence and that has been very frustrating. Reconnecting with friends after 18 months abroad and with an illness has been a challenge as well. But at the same time I have had plenty of time to reflect, think about the things that are important to me and what this thing called life is all about, and I feel like I’m in a good place right now, moreso than a lot of physically healthy people.

I feel there are so many positive things happening lately too. While in North Melbourne I have been able to visit fellow Traralgonites Chrissie and Wes and their three-year-old son Aston who has undergone a bone marrow transplant at the Royal Children’s Hospital. It has been a long, tough nine-month journey for Aston who amazingly recovered from stage 4 GVHD and a stint in intensive care, and now he finally gets to go home to Traralgon for good. Seeing Aston doing so well and the way his parents rally around him has been a major boost for me. Around the same time, dear friends of mine in Merimbula have reached a milestone: their two-year-old daughter Pearl is now four years on from her leukaemia diagnosis, has had two years chemo-free and is strong and well. Jimmy Stynes said in his book, “Those looking for perspective will find it in bucketloads when spending time with kids with cancer.” Their resilience in the face of everything they’ve been through is just inspiring and life-affirming. It also shows that even when things seem bleak and neverending, there is always hope.

Today was also a great day because I did something I’ve never done before: I wrote a song. At RMH there is a wonderful music therapist called Emma O’Brien who visited me while I was on the ward for some guitar playing and singing. While I was “inside” I put some poetry together, and today I visited her at the recording studio (yes RMH has a recording studio!), we added some chords to it and we’re planning on doing an initial recording next week. It’s a great song and I’m excited about it. Rock stardom here I come!
Emma O'Brien featured in the November 30 edition of The Age's Melbourne Magazine

Now a funny story to cap things off. Last weekend I went out for dinner in Port Melbourne with my brother and some friends. While I was sitting staring out the window at the beach views, I noticed that my vision was crystal clear. I’m mildly short-sighted and need the help of contacts or glasses to see for long distances. But wait, what was this? I could see ships clear as day on the hazy horizon, and I could read the specials board from the other side of the room. Had my vision magically corrected itself? Had Megan’s stem cell superpowers given me perfect vision? I was baffled by this until I got home and upon inspection of both my eyes, I realized that I was still wearing my daily contact lenses that I had forgotten to take out the night before, when I had flopped into bed exhausted. These lenses had withstood a night’s sleep and a shower, and once they were finally removed, alas, I was blind as before. Classic blonde moment (no I can’t blame it on “chemo brain”, I was always like this). Ah well, I still hang on to the hope that Megan’s stem cells will pass on some kind of superpower, her mad guitar skillz maybe? Her unbeatable Just Dance moves?

So that’s November. A month in which I reached a year since my diagnosis, a month in which I recovered from my second stem cell transplant in a year, a month in which I wrote my musical opus, a month in which the sun shone on Melbourne and reminded me why it is still one of my favourite cities on earth. It’s all good folks, it’s all good. 

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