Thursday, August 9, 2012

Road trips and road blocks

Q: What did the skin say to the syringe?  

A: Don’t be such a prick.

These are things I have to resort to to entertain myself in hospital; making up lame jokes like the one written above. They can also help lighten the mood when things get – much like the weather at the moment – bleak.

Because there hasn’t been that much to laugh about lately, really. On Tuesday, I had PET scan no.6. Since I am an old hat at PET scans, the whole procedure is pretty much routine for me now: arrive to hospital starving hungry, tired and grumpy (after 6-12 hours of fasting), fill out a form, get called into a room, change into hideous hospital-provided pants (because the metal zipper of my jeans will interfere with the scan), get injected with radioactive liquid, lie in a dark room for an hour, lie on the PET scanner bed and get passed through the whirring donut. I have grown to hate PET scans and they are usually preceded by two days of major pre-scan anxiety, which means I don't sleep well the night before and am generally a grumpy, cantankerous person for a day or two and horrible company. 
This time around I had pre-scan anxiety like no other. I literally had two hours sleep the night before the PET. It’s really no wonder, since only one of six scans have given me anything to celebrate. PET = pain, in my book. But additionally, I had a very bad feeling because of the signs my body had been giving me. I didn’t get many side effects from the chemo, and in my third week, when my blood counts were coming up and I should’ve felt better, I felt very, very tired, my appetite was next to nothing and I had the occasional night sweat – at times I felt worse than I had in the previous two weeks of my chemo. Which just gave me an inkling that the cancer was still hanging around; I felt a lot of these 'old' symptoms were coming back.
And it really shows how in tune with my body I actually am, that my hunch was right. My results weren’t great. Basically, the cancer has barely changed. It hasn’t really grown, but it hasn’t shrunk either. "If you're a half-glass-full kind of person" as my haematologist would say, it has halted the lymphoma’s progression, which is something, as pre-chemo, it was growing mega-fast.
But what it means is that I can’t have the stem cell transplant on September 3 as planned, because there is still too much cancer for it be to curative. Before the SCT can go ahead I need more chemo (just to add to the bucketloads I have already had) and this time we are heading into unknown territory. They’re going to have to try a chemo that hasn’t seen my lymphoma before - which could be a good or bad thing. Good because my body hasn’t built a resistance like it clearly has to the Hyper-CVAD, bad because it might not work. But the most annoying thing in all this is that they will have to push back the stem cell transplant even further – to something like November.
Just another obstacle, another change of plans, and my chance for a cure just pushed even further away. I really, really needed some good news this week – all of my last consultations with doctors have been bad news, and not just bad – worst-case scenario a lot of the time. Oh crap - your cancer’s come back after 6 cycles of chemo and a stem cell transplant, oh shit, now your cancer is growing at an unprecedented rate and you need more chemo, oh !@#%, the chemo didn’t really do the job, now we have to switch to a different poison that might not work. The fact that I want to scream right now would not come as a surprise.

And … depression. Oh boy, do I understand depression so much more than I ever did. I feel for anyone who has to go through it, it is a dark, dark place to be. I was so optimistic when I began this journey, and I honestly believed I would beat this disease. Death didn’t even register as an option. Now things are different, and dark clouds of doubt hover over me every day, because as hopeful as I would like to be, I also need to be prepared for the fact that things won’t work out. The result is me trying to hold myself in some kind of emotional ‘limbo’ where I don’t get my hopes up but I don’t slip into the depths of despair either. It is very, very difficult. 

The last round of chemo was a busy cycle, and mostly due to Matt being here, though he’s gone home now. Poor Matt– having been here when I got my bad PET scan results, he was dragged onto my horrible rollercoaster of hospital visits, family dramas, last-minute plan changes, antibiotics and all the things that have become a normality to me. Though, even I have had a three-month break so it’s been pretty hard for me too. The timing couldn’t have been more wrong, but it wasn’t like I could tell my lymphoma to take a week off. It was a difficult time but we also managed to make the best of a shit situation, and if Matt had no grasp of what I’ve been through in the last six months, he certainly does now!
But … all these things aside, Matt and I got to do some pretty cool stuff, like a day trip to Wilson’s Promontory (where we saw kangaroos! And emus! And a wombat) and Tarra Bulga National Park which is totally cool and virtually in my backyard, and a lot of other things, like some absolutely breathtaking sunsets … I’ve seen a lot of sunsets all over the world and have decided that Australia has the most dramatic, especially in winter. (And we got to travel in an XR6, because one positive thing about having cancer is that your parents let you take their sportscar out, when they would never do that otherwise. Win. ) I drove four hours on day 7 of my chemo - clearly I couldn’t do any of the arduous walks - but it’s nice to know that cancer doesn’t completely control my life, and sometimes I do get time to smell the roses.

Wilson's Prom: one of my favourite places
It was so nice to get out of town, to breathe in the sea air, feel the sand between my toes, delve deep into the wet mossy rainforest … we really do live in such a beautiful, fantastic country.
Wednesday it was back to Peter Mac and by Thursday I was neutropenic. At this time I noticed a little red spot on my hand, and I was instantly wary, as I’d had this type of skin infection show up during chemotherapy before. What do you know, by Saturday the redness around it had spread and there was clearly an infection going on. The doctor gave me oral antibiotics so I did what anyone with neutropenia would do – went to the footy!
That night I was supposed to have my wig party which I cancelled because I was neutropenic (sorry everyone. Will reschedule, I promise). Instead I went out with a small group of my closest friends and relatives, and you know when you have one of those awesomely fun nights, which is fun for no other reason than your ridiculously awesome company? This was one of those nights. The next day my sides still hurt from laughing, especially at the sight of Sam in my blonde wig. It was just a really lovely night and I feel so lucky that I have so many people in my life who can put a smile on my face, at a time when I don’t have that much to smile about.

Oh dear. Who are these people? Please note we were rejected from
Section 8 which apparently has a 'no-wig policy'
The next day my hand was swelling up to the point it almost had its own postcode, so back to the hospital I went. This is when they told me I had to be admitted to hospital. I cried. Seriously, enough is enough, why do I have to have this swollen, sore hand on top of everything? I went into hospital on Sunday, and Matt was leaving Wednesday. The doctors said I would need IV antibiotics for a few days and I couldn’t bear the thought of still being in hospital when he left. One of the nurses knew how badly I wanted to get out and convinced them to discharge me, with “pumps” of antibiotics that I could hook up to my PICC line myself and carry around (I tied mine to my belt hooks). This meant I was out of hospital, and I was so happy. So now, I can give myself injections, I can give myself IV antibiotics and if you asked me to dress a PICC line I could give you specific step-by-step instructions and even show you how, and I bet I’d do it perfectly. Surely I should have some medical qualification by now (I told mum that I should have a nurse qualification soon, which was met with a ‘whatever’). 

My antibiotics on the Great Ocean Road
So Matt and I took this window of opportunity. At about 1pm we picked up a hire car from Melbourne, were ‘lunching’ in Lorne by 4.30, indulged in some unexpected whale spotting, got a speeding fine, nearly hit a roo, stayed in a gorgeous cottage with Jacuzzi in Port Campbell, woke before sunrise to see Loch Ard Gorge and 12 Apostles in the golden morning light, then made it to the airport around midday to get Matt on his plane to London. It was a lightning trip, but man it was worth it. However, at the end, we faced another difficult goodbye as I left Matt at “the door” of International Departures. You know, that door at Melbourne Airport that people who are flying overseas disappear behind, and sometimes you don’t know when you’re going to see that person again. This was the case for Matt and I, but I am so thankful I got to spend this time with him, I just wish circumstances had been better.
The moral of the story is that when things are doom and gloom, there are still so many blessings in life. Things are definitely starting to take their toll, it has been 10 months since I was diagnosed, and I feel that this has been the most testing time of my whole journey, by far. But if I can get through this, I will feel like I can achieve anything. And even though, let's face it, my life is pretty shit, I am still able to laugh, share and enjoy this world that I live in. Because when I am unable to do that, the cancer has won already. While I am still breathing I just have to enjoy each moment I've got. 

1 comment:

  1. Beth, you are amazing. Keep fighting. Keep travelling whenever you can. Keep nourishing your body and soul. And keep joking (your opening joke is of a sub's standard, it is not sub-standard...sorry couldn't resist!) My thoughts are with you. x Luna