I had several jobs I needed to complete before I left for the Wairarapa Rally on Thursday night to help with recce and sweeping. It's a job I enjoy and do every year.
On the Friday my brother Mark helps me with over-seeing the recce. (Reconnaissance) It's a day before the rally where the rally competitors get to drive over the entire 16 rally stages at normal speed in a standard car in order to make pace notes that will enable them to drive faster over the
roads when competing. Our job is to make sure the cars stay in convoy and don't get lost. This year we clocked up over 500km's in just the one day.
Then during the actual rally on Saturday and Sunday Sarah and I have the job of "sweeping" the even numbered stages. This basically means that we follow the last car through the stage and pick up paperwork from cars that have crashed or broken down. We also pick up paperwork from the timing crews and report all the information back to HQ via radio. It also gives me the opportunity to legally drive flat out on closed gravel roads, terrify Sarah and have a ball!. We even get to carry our own paramedic in the back seat. However they usually insist that they are there in case we come across a crashed car and not for my benefit ;)
Last Thursday afternoon I had an appointment with my Haematologist to discuss where things were at with my treatment. I had originally written a long list of things that I wanted to discuss but that morning I re-read the haematology clinic letter to my GP from October last year in which Dr D'Souza outlined that there was no longer a chance of any curative treatment and that he recommended that I choose a suitable hospice. That reminder was quite a wake up call. I'm certainly not going to complain about every ache and pain when I'm probably supposed to be dead by now! Luckily the Adcetris seems to be doing it's job.
Well that's what I think anyway, that it's doing it's job. But after speaking to Dr D'Souza he wasn't so sure. He was concerned by my on-going fevers. We have booked a CT scan for about 2-3 weeks from now and will make a decision then on whether to order more of the drug based on the results. It left me feeling quite flat.
However yesterday on the way back from the rally we drove to Palmerston North and I received my fourth cycle of Adcetris. It's the last of the first lot of the drug we have imported . I spoke to my oncologist Richard Isaacs about my state of health and he had a different impression. He felt that considering my lung damage, which is of unknown origin, and the fact that I was weening off steroids, it wasn't a surprise that I was running fevers. He too agreed that until we see the CT scan results we won't know. However he wasn't too concerned and remained quite upbeat. I felt a lot more confident after that conversation.
I mentioned that the ringing in my ears is now quite loud and that my haematologist felt that it was possibly neuropathy, a side effect of Adcetris. I also told him that the last cycle was particularly hard on me and that I didn't start to feel remotely well until the last three days of the 21 day cycle.
He thought it best to reduce the dose by 10% to reduce the toxicity. However as the drug had already been prepared that meant throwing away $1600 worth on the spot.
What's worse is that had we made that decision last week we could have used just two vials of Adcetris instead of three and saved $5500. Bugger! Oh well you can't dwell on these things, we have a budget for the drug and you just have to mentally write it off and not dwell on things otherwise you could get quite depressed!
Oddly enough Sarah and I still buy the specials at the supermarket and save petrol vouchers all to keep costs down. Then you blow a small fortune in the blink of an eye. I guess the best way to think about it is that it's only money and if I hadn't been classed as terminal last year then I wouldn't have it to spend on treatment anyway.
I have made an appointment later in the week for an eye exam. My left eye has rapidly degenerated and the glasses I got just two months ago are now almost useless. I figure I'll get the left lens replaced and the right lens which isn't so bad can stay. I also need new reading glasses. The ones I got two years ago are also useless. I can see better without them because of the nearsightedness of my left eye. Ultimately I'm hoping the cataract surgery I'll have at the end of this treatment will fix most if not all of my vision problems. The last eye exam showed no sign of nerve damage to the eye, so you'd have to expect it's all related to the cataracts.
Gosh add that to the hearing damage and everything else it's a wonder I still manage to smile some days! However I'm still here, doing lots of fun stuff and ultimately I don't let anything get in my way or slow me down. It's a case of playing the hand you are dealt and making the most of what I have.
It's sure is good that I have the total support of Sarah. To her nothing is a problem so big that we can't overcome it.
Anyway this post has dragged on I'll update again as things progress. I'm hoping this cycle will be easier than the last. Everyone agrees that I probably picked up a stomach bug last cycle and that made things a lot worse.
Cheers! ..Ron
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