Delays..

I got a phone call 3pm Saturday afternoon, It was oncologist Richard Isaacs phoning to ask how things had gone with my meeting with Alwyn D'Souza on Thursday. He said there was still no sign of the drug, so he had rescheduled the first cycle appointment for a week later, Tuesday the 7th Feb. He asked if I'd managed to get a CT scan, which I had, and then with his parting words he told me his horse was going to win today. It's pretty cool when you have a doctor that's as laid back as he appears to be.

So yesterday I had a re-staging CT scan done at Pacific Radiology in Lower Hutt. My health insurance picked up the tab and pre-approved the procedure in under 24hrs. The bill came to $1266.
Once again though the CT doctor failed to get a cannula into my pathetic veins and as a result the scan was performed without contrast medium. Apparently it doesn't make a huge difference to the resolution. I have my doubts. (I was given a CD of the images for my records. I took a look, nothing discernible for an untrained eye to see though) Richard will phone me with the results next week.

I've had a busy couple of days. Yesterday all the wiring was finished and signed off in the outside garage.  I've also installed some green spotlights that shine up into the bush giving a really cool effect for when we have BBQ's or a Spa.

Today I cleaned out the gutters of leaves, installed some plastic mesh to stop it happening again and then made some extra brackets to support the guttering as I felt it wasn't as supported as it should be. I then removed and cleaned the water catchment filters on the both water tanks.

I unscrewed the inspection plate on the bottom of the 115mm inlet pipe to make sure there was no debris or dead birds lurking in the underground pipework. Unfortunately for me there was about 200 litres of water just waiting for me to unscrew that plate!  Soaked would be an understatement! It blew out like a geyser ..However it was clean. (as was I!)

Tomorrow I plan to finish trimming out Sarah's little office workshop with some 3/4" beading to tidy up the corner gaps in the plywood. Then I'll design her a workbench and maybe build it too.. depends on time.

I'm booked for an eye exam and new lenses for next Tuesday. I have to do something about my failing eyesight, just to get me through till I can have cataract surgery. Today I feel like I'm walking around in a blurry, smokey haze. My biggest fear is that it will eventually get so bad I'll be unable to drive, Let alone race!!

..Ron

Waiting for Brentuximab to arrive.

It's been a busy time these last couple of weeks.
Firstly I'm still feeling really good. My blood counts have improved again, platelets now 47 and haemoglobin 109. I'm a lot more steady on my feet and feel more agile. I'm no longer having to gingerly make my way around, afraid of falling at every step.


Last weekend I entered the Port Road Sealed Sprint in my Mitsubishi Evo and was pleasantly surprised to win outright. It was a rain affected result (I'm sure there was some sort Duckworth-Lewis calculation in the results) with times from only the first two dry runs being counted due to some people not being able to complete their third run in the torrential rain and resulting surface flooding.

Last week I received word from the pharmacy at Wellington hospital that the drug had been ordered and they expected it to arrive within the week. So far it hasn't appeared. (It can only be supplied to a registered public hospital and as the private hospital I'll be using isn't registered with the drug supplier, it explains why Wgtn hospital pharmacy has become involved).

Yesterday I drove up to Palmerston North to meet with private oncologist Dr Richard Isaacs to discuss my treatment and for him to get an assessment of me. The meeting went well and I was surprised just how much medical history and information I have stored up in my head. What was even more surprising was that I managed to get nearly all of it out, with only a few minor things forgotten but then remembered on the long drive home.

One thing that we both agreed on was the need for a CT scan before starting treatment. This will give us a baseline to measure any improvement and to re-stage my disease post Vinorelbine.
I've been running around all day today getting the necessary forms filled out to get an urgent CT scan done tomorrow under my medical insurance. I'll also get a bone density scan done too, I'll pay for that myself as it's only $150 (compared to the $1500 CT cost).
Hopefully my bones haven't become too weakened by the two years of prednisone use.

I had a meeting today with my haematologist, Dr Alwyn D'Souza, and we went over quite a number of issues. He is also keen to get me weened off prednisone, but we need to see what effect the Brentuximab has on my lungs before doing so. If my lungs get better and the cough goes away then it's safe to say I can ween off the pred. If not then it's status quo, or maybe a small reduction, just enough to keep it under control (assuming it would be BOOP or some form of pneumonitis).

My eye sight is absolutely shocking now. An appointment last month with an eye specialist confirmed that I have cataracts as a result of the long term use of prednisone. However in the last few weeks the decline in my focus has been quite frightening to the point I no longer feel confidant driving in certain conditions such as dusk etc. Tomorrow I'm going to see an optometrist and see if I can get a pair of cheap corrective lenses just to get me through the next three months until I can have eye surgery for the cataracts. Lenses won't fix the smokey grey effect of cataracts but they will at least mean I can focus a little better. (hopefully).

So assuming the drug arrives sometime soon I am booked for my first cycle of treatment on Tuesday 31st Jan in Palmerston North at Richard Isaacs clinic. If the drug is late in arriving it will probably be the week following.. there's no hurry I guess. I'm pretty well at the moment, which is good as it means it will have less cancer burden to work on (well that's my theory!)

I'll update once we have confirmation of the treatment date.

...Ron