PET scan #3: third time lucky!

When I was given the news my PET scan came back completely clear, the heavens didn’t open to the chorus of ‘Hallelujah’, there were no tears, there was no jumping up and kissing/hugging the doctor ... it was nowhere near as dramatic as that. The news was merely met with a feeling of absolute joy and relief, but at the same time underpinned by an understanding that the journey is far from over.

The days leading up to the scan were filled with nervous tension. I hadn’t been sleeping very well.  All sorts of thoughts were running through my head. My second round of Hyper-CVAD had almost been a walk in the park compared to my first, and the lack of symptoms made me suspicious … was the chemo working? There was no way of knowing. And with the memory of my last two PET scans - which did not wield uplifting results - etched in my mind, as much as I tried to remain positive, that little black slug called doubt would occasionally creep in. Hyper-CVAD works for 4 out of 5 people, but every now and then I couldn’t help but wonder – would I be part of that doomed 10%? It was a possibility and one I had to be prepared for.

Finally the day of the PET scan arrived. While I come from a religious background, I don’t consider myself a particularly spiritual person nowadays. But when I pulled on my hospital gown, lay down on the white bed and was passed through the PET scanner for the third time, I prayed. Boy, did I pray. I prayed more than I’ve prayed in my whole life, to whoever was listening. It’s hard to explain what was going through my head at that time. As hard as I was wishing for positive results, there was also a peaceful feeling; an acceptance of my own fate.

However, the results of the PET scan wouldn’t be up for discussion until Friday, two days later, so I was just going to have to distract myself until then. So of course, I indulged in some good old-fashioned retail therapy in Brunswick Street. While I was shopping my phone rang, and it was Trish, the nursing co-ordinator from Peter Mac. “I just wanted to let you know that your PET scan was fantastic,” she said. “We’ll discuss it more on Friday, but it looks great. Everything is falling into place.” I was really grateful she called to tell me, as it really did take a load off my mind for the next day or so, even though I didn’t know the full details.

By the time Friday morning came around, my whole family was in Melbourne. My brother had travelled down from Bendigo, Dad and my little sister Megan (who had taken Friday off) had travelled up from Gippsland and my mum and my older sister Jacqui had already been in Melbourne. My appointment with the oncologist was bright and early at 8.45, and when I was called into the doctor’s office, I was accompanied by an entourage (Dad, Mum and Sam).

Being told my PET scan had come up completely clear was exhilarating. It was exactly what I needed to hear. But it’s important to put the result into perspective. Having a clear PET scan result does not necessarily mean I am free of cancer. The tracer used in the scan only detects cancer that exceeds 5mm. Therefore it was more likely, in my case in which the cancer had been very aggressive, that there was still cancer present, it was just simply too small for the scan to pick up. In any case, the cancer had been reduced enough that it was safe to go ahead with the stem cell transplant. It also meant that I would not need a third round of Hyper-CVAD, which meant I would not be admitted to hospital again any time soon. This was an immense relief to me; things were finally falling into place.

My very first PET scan, taken in November 2011. The big black splotch in my chest is a tumour. The black dots in my midriff area are secondary tumours. These are all gone now.

The first massive hurdle has been cleared, but there’s more to come. In four weeks I will begin what will probably be the hardest part of the whole process – the high-dose chemotherapy followed by the stem cell transplant. This will be carried out over three weeks. For the first week, I will be administered with a monster hit of chemo (we’re talking 15 times the amount I’ve had before), made up of three different drugs. These drugs are so potent that they will destroy my bone marrow, which will lose its ability to make stem cells, which produce the body's blood. About 48 hours after the round of chemo finishes, my stem cells (of which I have “gazoodles”, to use the technical term coined by the oncologist) will be thawed and given back to me via a drip. Over the following two weeks I will remain in hospital as I endure the side effects of the chemo. I will need blood transfusions, I will most likely need a feeding tube, I will have restricted visitors (immediate family only) and when I am finally eating and drinking properly again, I will be discharged. From here, the recovery – the process of building my strength and regaining blood cell production – will be long, and is likely to take months.

But even after all that, there is a 50% chance my lymphoma will come back, and if it comes back, it is incurable. So the oncologist has recommended that six weeks following the transplant, as long as it is safe to do so, I should undergo radiation to the chest area, which will help reduce the chance of a relapse by another 20-30%. Radiation also comes with a raft of risks and inconveniences, but these are pretty small in the scheme of things.

It was a lot to take in, but the main thing to come out of last week’s appointment and the one I haven’t stopped thinking about is the fact that my scan was clear. And when you look at what we were dealing with (the tumour in my chest was 14.5 by 9.5 centimetres), it is nothing short of a miracle that all that cancer is as good as gone.

The next decision was a big one: now that my long weekend was gloriously free, do I or don’t I hunt down a ticket to my favourite music festival, Golden Plains? Before I got sick, it had always been my plan to return home in March to attend this festival, so I could catch up with friends, enjoy some great music and get a little bit of the Australian summer before launching into the dreaded double winter.

The decision was made at 10am Saturday: we’d tracked down a ticket, I’d handed over the money, and I was going, in spite of how tired I was feeling. And after two days of beautiful sunshine, amazing music and excellent company, it was a decision I did not end up regretting. It’s nice to know that even after five rounds of intense chemotherapy, I am still able to dance myself into a stupour until 4am. It’s also nice to know that doing a festival sober isn’t too bad (although I did indulge in more than one Pink Flamingo, it has to be said, in keeping with tradition, of course). The tiredness, hoarse voice and achey feet were all merely symptoms of a good weekend and totally worth it. For the first time in ages I got to feel like my old self again, relishing my independence and feeling carefree, without doctors and nurses fussing over me.

OhAunty Meredith, how I have missed you ...

I got a single night’s sleep in my own bed before I was off to Melbourne again, to undergo surgery at the Royal Women’s Hospital to get some of my ovarian tissue removed for freezing (as the chemotherapy I will receive in four weeks is very likely to do permanent damage to my ovaries). After all the chemotherapy is over, the ovarian tissue can be implanted and alongside hormone treatments, will hopefully kick the ovary back into production. However, the procedure is very experimental and very few births have resulted from this process, so there are no guarantees, but there rarely is in this game. It was laparoscopic surgery (done via an incision in the belly button) with no complications; pretty tame compared to everything else I've been through, really.

After surgery I got my PICC line removed. It wasn’t going to be needed and as it can be a common site for infection, the doctor decided it could come out. I was relieved to see it go. Its removal to me was symbolic of the first chapter of my treatment being over. 

So right now I get a four-week breather ­– free of hospital visits, medications, check-ups and tests. It is four weeks in which I am expected to look after myself, build up my strength, remain active and get myself in the best possible shape for the transplant. I’m going to enjoy this time. The first hurdle has been well and truly cleared and I see the next four weeks as a little window of opportunity: to visit all those people I haven’t had a chance to. I'm going to travel a bit and just relax and have fun. I feel like I can look to the future with a lot of optimism now and it feels great. I might not be free of treatment just yet, but I'm free of uncertainty, and that's the best thing that's happened to me to date.