I’m finally getting around to writing this entry on Wednesday, 14 December. There has been a lot to take in in the past couple of days. I’m not sure if any of the information that I have makes sense, and we have been desperately trying to digest it.
But first… I spent another night sodden in my own slimy sweat. My temperature yoyo-ed throughout the night and broke several times. I didn’t bother to change my bedclothes because I knew they would just get wet again and I’ve already explained the saga of clothes washing – to be avoided wherever possible.
I was due to meet the doctor at exactly 10am to discuss my PET results. This happened at 11am and I received no treatment during the wait so that was wasted time. Such is life. My temperature remained high, though not at fever point, and I was getting anxious (and probably a bit angry too).
The first bit of news I got was that the tumour in the armpit is virtually inactive (according to the SUV max value), though it has not reduced in size. This may have been good(ish) news but for news I received the following day (Tuesday) – I don’t just have one tumour under my arm, I have three. According to the doctors here these three tumours are all evident on my October scans from Perth and so they’re not new. Well, they sure are new to me, since the reports from Perth (oral and written) described just one tumour under there. I can’t win. Anyway, here they now say that two of the armpit tumours are active (very low levels) and one is inactive. What the hell am I supposed to believe?
Main kidney tumour
This one’s not flash. It is about the same size as before (though I don’t actually have accurate measurements from either this scan or the Perth ones) but it is the most active of all the tumours. It rates at 20.2 SUV max. A “good” SUV result is apparently less than four.
The vexing question of whether or not the disease has spread to the liver has finally been confirmed. I am told that there is a 1.5cm tumour in the liver.
Abdominal and pelvic tumours
The abdominal tumours are difficult buggers to pin down. They are still there and there’s no evidence of cell death. But they haven’t grown. Their SUV value is around 14 (way too high). BUT… these tumours have been treated with HiFU (the one in the kidney has not). HiFU causes a lot of aggravation and inflammation which I’m told can skew the SUV reading. So, it is *possible* that these tumours may be a little smaller and less aggressive than they appear at first glance, but we won’t be able to tell this until after the effects of HiFU have had a chance to wear off in the days and weeks ahead. This is definitely a fingers crossed scenario.
I am pretty damn angry about the quality of my so-called results from today. The people here have had all my scans for eight weeks or more and they could easily see that none of my reports mention an SUV max value. Essentially I was told that it was impossible to determine whether any of this treatment (seven long, hard weeks and over $100,000…) was working because they didn’t have my SUV max values from the October scans to compare with. This is poor form. I have now scrambled around to beg doctors in Perth to get in touch with the scan people to see if they can retrospectively apply the SUV values to the old scans so that I can provide them to the people here so they can do a comparison. Why couldn’t I have been told that I needed these figures to do a comparative analysis, weeks ago? I am not impressed.
Future treatment in Xian?
The doctor has recommended that I return to Xian to have four more weeks of treatment, much the same as I have been having thus far with the possible addition of low-dose chemotherapy (which apparently supports the effectiveness of the SPDT but does not have the damaging side-effects of ‘normal’ chemo). That’s something we will mull over while we’re back in Perth. I am going to need some better interpretation of the results before I sign up for that. Oh, and some evidence that the treatment has actually done anything for me would be good too.
Coming home for ChristmasI have received a lot of conflicting information about whether it is medically advisable for me to take a break from treatment here and come home for Christmas or not. First I was told it was OK for me to leave this weekend, then that was changed and it was recommended that I stay an extra two weeks and basically go home on Christmas Day. No thanks. My mental health has got to be worth something. I have to leave here before I go insane or strangle the next person who tells me one thing, then something different then something different again – all in answer to the same question.
So that’s that. We’re leaving Xian on Saturday morning and will be home in the early hours of Monday morning. We are taking a bit of a roundabout way home but we had to use up stupid dodgy Qantas tickets that we’d bought and for me it was preferable to take longer to get home but to get out of here and into warmer weather ASAP.
As for how long I can have to rest in Perth, well, that’s another mystery. I have been told: 15 days, 20 days, 30 days, about a month, shorter if I don’t feel well and need treatment, longer if I feel well and don’t need treatment. Yes, well that’s clear as mud.
The rest of the day
The rest of the day didn’t improve. Tensions were running high – mine in particular but Brad’s were also strained. On the face of it the results do not show any particular progress. There may be some progress, but we don’t know. The disease may even be more stable than before, but we don’t know that either.
I decided to just stick it out for another week and have five more days’ worth of treatment. What’s another $10K at this point? I’m here, might as well suck it up – but a week is definitely my limit. That decision meant drops which didn’t start until 4pm so we had another late night at the hospital. Added to that my fever kicked up and stayed around 39-39.5 all afternoon.
It was an afternoon and evening of confusion, sadness, crying, fear, numbness, frustration and a myriad of other emotions have all blurred together.