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From Australia – Tommy Barkmeyer: Lucky Me! Tommy B.

It might seem strange for me to say – four-and-a-half years after being diagnosed with a rare blood cancer – which I feel like a very very lucky man. I can’t say I have enjoyed these last few years of treatment and the slow recovery that followed. I doubt that any of us who have gone through such treatment would – or could – have enjoyed any of it. I can say, though, that my journey has given me a lot of time to reflect on my life so far and everything seems to have fallen perfectly into place. Even the life events that didn’t seem like happy times while I was living them have turned out to be turning points that have made me stronger, better, and, I hope, wiser. If nothing else, I feel like a very lucky man four and a half years later because I am still alive and looking forward to trying to stretch that to five, ten, maybe even twenty years. What the heck! I’ll aim for at least thirty years! DREAM BIG! (Would another fifty years be overly-ambitious?!)

There’s an old saying that “life begins at fifty,” and I intend to become a living example of that adage. After my bone marrow transplant in 2013 I’m now lucky enough to have two birthdays fifty years apart to mark my new beginning. That is the birthday of my new immune system in February, and the birthday of the rest of me in March. As I said, this journey has not been fun in the slightest but I believe that if you can make a positive out of anything that happens to you, then eventually only positive things can happen. That’s not always easy, but I’ve had some practice these last few years and I’m getting better. Sometimes I haven’t been able to find the positive until years later, but that gives me the faith that, if I can’t find that positive now, the reason I’ve had to go through this will become clear later in life. And that’s something to look forward to!

Through sheer luck I was diagnosed with Waldenstrom’s macroglobulanemia in June 2011 and immediately began chemotherapy. I was told my cancer was diagnosed around ten or fifteen years earlier than most people’s, and, in my case, was particularly aggressive.  So,   the need for a quick start to treatment.  I say I was lucky to be diagnosed because, like many Aussie blokes, I avoided visiting doctors unless absolutely necessary. “She’ll be right, mate!” is a saying used often by many Australian men of my age, and works well as an excuse to put off seeing a doctor. However, after having an epileptic seizure while visiting friends, I promised them I would see one to put their minds at ease. If not for that promise, “She’ll be right mate!” would have been enough for me.

I picked a medical centre close to home, and wound up seeing the same doctor my father was seeing. Only coincidence, but where the good luck came in is when that doctor noticed an abnormal protein in my blood test and followed it up. To be told you have a mild form of epilepsy is not good news. To be told you have a rare and aggressive blood cancer with no cure is worse news. But I know now this cancer could have gone undetected until something went seriously wrong for me if I had not kept my promise. How lucky am I!?

The original plan was to have six rounds of chemo, and, in my head at least, the cancer would be gone and life would return to normal. I had a lot to learn about cancer then, and still haven’t stopped learning. Four months into the plan the chemo had put me in such bad shape my body couldn’t tolerate another round. My blood counts were down, my weight got down to 50 kg at its lowest, my gums were sore and bleeding, I was constantly nauseous, tired, in pain, etc., etc., etc. After a couple of months of trying to put on weight and get a little stronger again it was decided to try a different treatment. Thalidomide is used normally for myelomas. But because Waldenstrom’s – a lymphoma – was similar to a myeloma, it might be worth a shot. For me it was only a little better than the chemo on the Fun Scale! It was nothing that would kill the cancer, just something that would manage it. I was hopeful it would keep it under control until I could have a bone marrow transplant. Great; a new plan!

However, I wound up waiting around a year – maybe a little more – until a suitable donor could be found. My brother was tested first to see if he would be a tissue match, but no luck there. My sister was dealing with her own blood disorder (immune thrombocytopenia or ITP) at the time, and still is. So, no luck there either. In truth, I feel lucky to have the brother and sister I do. They couldn’t help me in this way at this time, but have helped me in so many other ways. I especially take inspiration from my little sister in how she has approached her journey with amazing strength and a supremely positive attitude.

So it was just wait and hope that an unrelated donor would turn up on the register. The thalidomide treatment was a much milder sort of chemo treatment, but I still spent that year going in and out of hospital with various ailments, generally for a week or two at a time, including periods in the intensive care unit. Eventually, though, I got the news that a lady in Germany was a close enough tissue match (a 9/10 I think it was) and they were doing further tests and harvesting. I think I’m pretty lucky that needle was found in such a large haystack!

(Apologies for the sunglasses but my eyes were particularly sensitive that day. No apologies for smiling! Lucky Me!)

The bone marrow transplant itself was a bit of an anti-climax. It lasted about twenty minutes and was just another bag of stuff going into my arm. It was a little boring for such a big occasion, but it really was a turning point and the start of a new life. The two-and-a-half years since then still haven’t been any fun, but those five weeks were the last time I have had to spend any significant amount of time in hospital. The recovery from the transplant has been tough, but, as I’m such a lucky lucky man, my life had already prepared me for these tough times.

I must admit my backstory is not quite as admirable as the countless stories of inspiration I have read of other cancer patients. Many many years as a performing and touring musician meant – for me at least – many many years of alcohol and illicit drugs. It may have been a lot of fun at the time, leaving me with many good memories (and a few lost memories, though I’m sure they were good ones too), but I eventually suffered the consequences in the form of a severe bout of depression and anxiety. I guess it could be seen as a rehearsal for the challenging times to come. But more importantly for me, facing that challenge involved me learning to meditate. I began learning in 2006 and eventually got through my depression and began looking forward to a new life with a much more positive outlook and healthy self-esteem.

With my meditation habit slowly getting stronger, I began to dabble in yoga to further my recovery. At some time in 2009/2010 I started practicing seriously. In addition to the mental and spiritual benefits yoga has to offer, I believe the timing of this was perfect to prepare me physically for the journey that I did not yet know was ahead of me. I was also doing very physical work at the time as a labourer in the construction and demolition industries. So, by the time of my diagnosis in 2011, I was reasonably fit and strong despite my past bad habits. Although that wasn’t enough to get me through my initial rounds of chemo, I think it did help to make me a candidate for the bone marrow transplant. Lucky lucky me!

So, with these two habits well entrenched in my life by the time of my diagnosis, I was pretty well prepared mentally and physically for the challenges of chemo and later the bone marrow transplant. But these habits also became very important in my recovery from the transplant. I did make use of some yoga stretches in my hospital bed to relieve pain at times, as the initial period after the transplant gave me loads of time to practise my meditation. This practice certainly helps me to keep positive. But meditation and yoga also trained me to consciously relax. This ability to relax your body and your mind, I’ve found, helps greatly to cope with pain, nausea, boredom, tension, worry, and is a very handy tool to get through hard times.

In addition, I was very lucky to get a place last year on one of the first “Fit To Thrive” programs conducted by the Leukaemia Foundation of Queensland. Under the supervision of an exercise physiologist, the program helped me to regain weight and strength, and, more importantly, gave me some additional tools to help me feel good more and more often.

The cancer is still floating around in my veins, but there is a lot less of it now. I’ve felt well enough to start performing music gigs again, and that in itself is enough to put a giant smile on my face. There’s still a way to go to my next goal – i.e., remission – and I feel it’s achievable if I keep doing the right things that have gotten me to this point. But even if I do achieve that goal, I’ve learnt the threat of the cancer returning will never really go away. It’s no use worrying about it! Something else I’ve learnt is that anything worth worrying about is something worth doing something about. And if you can’t do anything about it, worrying will do little or nothing to help. Luckily, I have acquired some tools that give me some level of physical health, a mental disposition that allows me to face my challenges with strength, an eager anticipation of the rest of my life, and some positive habits that could make the rest of my life a pretty long one. It’s been a tough lesson but I feel fortunate to be learning it. Lucky lucky me!!

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