Thursday, September 13, 2012

Your heart is a weapon the size of a fist. Keep fighting. Keep loving

Sorry I've neglected you lately, blog, but I thought I'd hold out until I got some good news. I don't much like writing about bad news. I don't like receiving it, and I definitely don't like passing it on. Just recently, it seems the universe decided that I deserved a break, and God knows I needed it. 

About three or four weeks ago, I was sitting in my oncologist's office, and I was crying. I had just received news that the last round of chemo I had undergone, Hyper-CVAD, had not shrunk the lymphoma, and my treatment plan had hit a massive speed bump. As I reached for the tissues, the oncologist said, "I think we'll all be reaching for those by the end of this session." I guess I am so caught up in my own journey that I forget what an emotional toll these things also take on the medical practitioners involved ... oncologists have to face the fact that many of their patients will die, and to have to look them in the eye and make them aware of that fact must be up there with one of the hardest jobs in the world. 

My oncologist told me that the mission was the same: we were still seeking a cure, but our chances of getting there had taken a big hit. 

The reality is: I have a relapsed lymphoma which is growing at an alarming rate, and we are running out of weapons to stop it. And when you're fighting a war, you use your strongest weapons upfront. So we've tried the R-CHOP, the high-dose chemotherapy, the stem cell transplant, all those things that have proven to have high success rates, but none of them could even put a dent in my lymphoma. 

But there were options left. One option was a chemotherapy regime I'd never had before (I can never remember its name, but I think it's called "Gem-Vin"). Gem-Vin had a 30% of shrinking my cancer (to put it into perspective, R-CHOP, my first line of treatment, had a 90% success rate). But as I said to my oncologist, statistics mean nothing to me anymore, and they honestly don't. Things are either going to work, or they're not. All along the way, I have fallen into the small percentages: the 10 per cents, 5 per cents, 15 per cents ... so you know what - 30 per cent actually sounds like my kind of odds, bring it on!

The other option presented to me was a clinical trial. This was a completely unknown quantity: drugs that had only been tested on a very small sample of people. It was too early to tell how effective they were; for instance, the drug worked for one person but not another; does that eventually turn into 50% or 1 in 100? It is a complete medical leap of faith.

So I decided 30% was better than nothing, and the Gem-Vin would be my next line of attack. We'd pulled out the tanks, bazookas and machine guns but they hadn't done the job, and now we were stuck with the clapped out rusty old hunting rifle from the back shed, and bullets are in short supply. 

But sometimes that's all you need. 

Gem-Vin was pretty easy to tolerate. There were very few side effects and I got through my low period with few problems. So I did what any cancer patient would do: I went snowboarding! My sister booked us an amazing apartment at Falls Creek and a group of us piled into our cars and spent two nights on the slopes. I managed to surprise even myself, going out every day and spending the whole day boarding ... it's nice to know I can still do these things after eight chemo treatments and a stem cell transplant. I would collapse in a heap at the end of the day, but I did all right. Once again I felt it was something I needed to do, revisit my 'normal' life, enjoy a taste of my former freedom. It was three days during which the only medical-related thing I had to worry about was how to keep my PICC line out of the jacuzzi. It was three days of pure escapism and it was great.  

Some of the 'Falls Crew 2012'

Sunset from our balcony
When I got back to Melbourne, it was a snap back to reality. I was booked in for a CT scan to see how things were progressing with the chemo. Pre-scan anxiety wasn't such an issue this time around, in many ways I think I have become numb to it. It is a very difficult thing to stop yourself from having expectations and hope in a bid to avoid heartbreak; I think it is human nature to feel these things. But for me, I saw it as simply going through the motions, but I would be lying if I said I didn't hope so hard it hurt as I passed through that whirring donut once again.

The next morning I was booked in for chemo. I went to the fifth floor, and sat in the chair in front of the window overlooking Albert Street as they fed me the chemotherapy through the drip. I hadn't received news on the CT scan yet but I had missed two calls that morning ... I recalled that one of my friends, in a spooky sixth-sense way, had told me she "had a good feeling about this chemo" several weeks before. I hoped to God she was right.

And she was! A young haematology registrar was the first to break the news - the lymphoma had responded to the chemotherapy, and there had been shrinkage across all sites in my body, which was a really positive sign. My oncologist was very happy with the response. It was hoped that after one more round of Gem-Vin, I could finally get a shot at my only chance of a cure: the allograft. 

So right now I am on day 7 of my second round of Gem-Vin. I have a PET scan in a week or so which will determine whether the allograft can go ahead. Things are falling into place, but as I know too well, nothing is certain, and I still have a long way to go. All I know is that it feels so good to finally, finally have some good news after a litany of worst-case scenarios. The result also gives me hope ... if this chemotherapy had a 30% chance of working, and it worked, surely the allograft can work too. As long as I keep falling into those small percentiles, I know I can do it. 

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