I should be used to curveballs by now. God
knows I’ve had my share. That adage: ‘you never know what’s around the corner’
– well that couldn’t ring more true for me right now. But what really took me
by surprise was the fact that this time a big Mack truck was screaming around my corner.
It has knocked the wind out of me but it hasn’t defeated me, yet.
So, backtrack to about a week ago. Things
were going pretty well for me, all things considered. I was several weeks out
of my stem cell transplant and I was feeling pretty good – getting stronger by
the day and able to keep up with most people. I would tire quickly and clearly
my strength wasn’t what it used to be, but life was about to get back on track.
I wouldn’t be running any marathons but I was doing alright. I had achieved
‘complete remission’ judging on my last PET scan and I was almost celebrating.
The doctors had congratulated me and it was hoped that we would never see my
lymphoma ever again. I knew I wasn’t out of the woods yet, but I was as close as
I had ever been.
The ‘only’ hurdle I had left was
radiotherapy – which would involve four weeks of coming into Peter Mac every
day, to be passed through a machine for 20 minutes. The premise was that it
would eliminate any cancer cells that were left, if there were any left. I
wasn’t too worried about this, as the doctors and nurses had assured me that it
wasn’t going to be anywhere near as bad as anything I had already been through.
It came with its own long-term risks, such as increased chance of heart disease
and breast cancer, but I was willing to take those if it decreased the chances of the lymphoma coming back. Radiotherapy was going to be
an inconvenience, more than anything.
Before I got radiotherapy, as per procedure, I had to undergo a range of tests, such as a lung function test, ECHO (heart
scan) and a PET scan – all things I underwent before my stem cell transplant.
These tests were considered a formality more than anything, and they didn’t
harbour much thought from me. Compared to the anxiety and fear that plagued me
before my previous PET scans, I was substantially more relaxed going into no.4.
So when the radiotherapy oncologist took me
into his office and told me that a small spot had showed up on my PET scan, I
was dumbfounded. It was not at all what I could have expected. When I looked at
the scan on his computer screen, there it was, clear as day, a 13mm spot in my
chest, right where the original tumour had been. The experts had deliberated
over this spot for about a week and were pretty much certain it was cancer. The
chances of it being anything else were incredibly slim. As a result I won’t be
getting a biopsy to find out for sure – the procedure itself is simply too
dangerous and will probably only confirm what the doctors really already, in
their hearts, know. I trust these men who have 20-plus years in the medical
industry working with cancers when they say it’s a relapse. I wish I didn’t
have to believe it, because the news is the hardest I’ve ever had to bear, but
I have to.
It has been a bitter pill to swallow. I am
only about 7 weeks out of my stem cell transplant and the cancer has come back.
I have been through every myriad of feelings – anger, disbelief, sadness,
despair, but most of all I just feel defeated. I have done everything I can, I
have put my body through things it should never have had to go through, and I
am back at square one again – in fact, a much scarier and dangerous square one. It feels like a kick in the guts. I spent days crying about this, but at the end of the day, like this whole
journey, I can’t control what happens. So what can I do? All I can do is live
each day like it’s my last. Literally.
To see how distraught my nursing
co-ordinator and my oncologist were about this scan really brought home what a
serious situation I am in. This has shocked and disappointed even them, and
they’ve have seen everything. But basically, my oncologist sat me down and gave
me three options.
Option 1 – Do nothing. Say goodbye to Peter
Mac, doctors, needles, tests, hospitals – walk out the door and go and enjoy my
freedom and live life. I’d have a pretty normal quality of life for a good six
months until my lymphoma would be large enough to show any symptoms.
Eventually, it would take my life, maybe after another six months, it’s hard to
say.
Option 2- Get radiotherapy, to the chest
area and upper abdomen, as originally planned, but a higher dose to the area
where the lymphoma had grown back. However, the chances of this therapy being
curative were 10%.
Option 3 – An allograft – a second stem
cell transplant, this time using my sister’s stem cells (who tested as a match
for me several months ago), instead of my own. This procedure comes with its
own risks. There’s about a 20-40% chance I could die from complications from
the procedure. But there’s a 1 in 3 chance that this procedure could cure the
cancer. Unlike my first stem cell transplant (called an autograft), where the
chemo was expected to do all the work, in this procedure, the hope for a cure
rests on the stem cells themselves, which are hoped to fight the lymphoma. The
downside is that the stem cells also fight a lot of my good cells, which leaves
me at danger of graft vs host disease, which can be deadly.
As I said to my doctor on the day, all
three options are “pretty crappy”. But option 3 is really all I’ve got left.
I’ve seriously had enough of hospitals, and I’ve had enough of feeling sick, but I can’t give up yet. Maybe if I was
80 years old and had lived my life, I would consider option 1, but while there
is still a chance, no matter how slim, that we can cure this, I have to take
it. The odds are stacked against me more than they have ever been, but in a way I am lucky I still have any options left.
There has been some discussion about me getting radiotherapy before the allograft. The danger of this would be that the radiation could do damage to my organs such as my heart and lung, and if it did, I might not be able to go through with an allograft if the cancer returns. However, if I go through the allograft first, I can still get radiotherapy if some cancer remains. It’s a tough call - do I take the reasonably painless, less effective procedure over the much, much riskier, more effective procedure at risk of losing my one window for the biggest chance of a cure I’ve got? The doctors have told me they’d be surprised if the radiotherapy was curative, but it would shrink the cancer and buy me time before the allograft.
Nothing is really going to happen for the
next few weeks. I will get another PET scan in four weeks to determine what the
spots are doing, and if the doctors need to act fast, or if they can buy more time while my body gets stronger. The longer my body has to get strong, the
less risky the allograft will be. However, the more cancer there is, the less
effective the allograft becomes. So it is just another excruciating waiting
game. For now, all I can do is set about doing all those things I want to do
with my time, like fly to WA, for example. I’ve never been there before, and I
have a wonderful cousin to visit over there, so the time could never be more
right. Last weekend I flew to NSW, and enjoyed a weekend in the Hunter Valley with some of my oldest friends - it was the best thing I could have done. I don’t want to waste time worrying about things that are out of my control - although I wouldn’t be human if it didn’t affect me somewhat. My favourite saying at the moment is “I could be dead tomorrow” - which is really true for all of us. I’m going to laugh, love, share, travel, spend and just enjoy those simple pleasures that we always take for granted. Spending quality time with quality people is what it’s all about right now.
