Beware of the limbo stick

When Hannah asked me if I would write a blog post for WLL, I was a wee bit excited… which quickly turned into WTF am I going to write about? Do I go back to the start in 2007 when I was first diagnosed with ALL (Acute Lymphoblastic Leukaemia), or 2012 when I had breast cancer? Or maybe 2014 when I was re-diagnosed with ALL and had a bone marrow transplant? Perhaps I could voice my frustration and anger about how out-of- the-blue, a year after transplant I relapsed again?

A lot to choose from but I thought I’d go with being in medical limbo.

The place that I found myself in from the moment my Dr said “I’m afraid it’s back, and we don’t think we can do much more for you”.

Now, as a 35 year old, who had finally got her life back after a year of transplant re-building, this was like being hit with a truck. I just went into medical mode and replied - “I don’t have time to die - I have too much living to do!”

Long story short, my amazing Dr, who has been there since 2007, rallied around and investigated trials and new drugs not available in NZ. Blinatumomab - an immunotherapy was the drug of choice. It had not long finished trials, and was currently available in Melbourne - the drug was now being given on compassionate grounds by the drug company.

So I waited in limbo. For the weekly vincristine to make a dent in my leukaemia-filled marrow. For approval from the hospital in Melbourne. For compassionate grounds from the drug company. For any information about about the drug that I was getting myself into!

Being in limbo, when your life is at a cross-roads is the most terrifying, confusing and confronting thing I have ever had to deal with. I honestly couldn’t see days in front of me. It wasn’t just me who suffered at the limbo-ness of it all. Family, friends were all there too, looking from the other side of the limbo fence. I can’t imagine what they were seeing, but I’m sure it wasn’t a pretty sight. To know if you should be trying to plan some sort of a future, or planning your funeral, is gut-wrenching either way.

Fast forward to today - I am about to leave again for Melbourne for my third monthly round of Blinatumomab, a drug that put me into remission within a month, one that has had no side-effects and has made me able to start seeing a happy future again.

The limbo stick still continues to be waved in front of me as the Doctors on both sides of the Tasman try to get Blinatumomab into NZ so that I can finish my treatments here instead of paying the costs of having it overseas. I am still waiting to hear whether any transplant hospital would be willing to do a second transplant on me or whether I am to stay on this drug for a year. And then there is the biggest limbo stick of all - will any of this make a difference in the long run? Blinatumomab is so new, there are not many long-term survival statistics available, especially for those with my unique medical history. And if I choose to have another transplant, would that make a difference? It’s failed once before.

One way or the other, the limbo stick will fall. That, or I’ll grab it and hit something!

If you are interested in following my story, I have been writing a blog since I relapsed in 2014: