18 June 2009

Thu 18-Jun-09 (up and down pain day)

The morning started with a school drop-off, followed by a visit to the post office to collect a package. As I entered the post office the young lady commented that we had the same model phone. When I handed her the slip, she told me she lived in the same street (there are only a handful of houses in our street and we know some of our neighbours). It happens that she is two doors from us. She commented that the painting of the exterior of our house looks great. I haven't had a good chance to check it yet, with the early departures and late arrivals home.

The first two things I noticed about Maria when arriving at the hospital were: (a) that she was looking and feeling much better compared with yesterday. She had eaten breakfast without any problem; and (b) swelling starting setting in around the left eye (see photo).

This was similar to first surgery in terms of timings, but not on both sides this time round (so far). It appears the reintroduction of dex (steroids) had the desired effect. She took a walk with the Physio to the gym nearby and did some general exercise and testing of her balance.

A little while later one of the radio-oncologists came through to obtain some background on Maria. I explained that only five weeks ago she finished six weeks of radiotherapy (concomitantly with chemo), receiving the maximum dose of 60Gy. We were told in Israel that she would have to wait about 2-3 years before receiving such a dose again. He agreed, but was to check with his 'boss' so we may/may not have much further involvement with that team. There was a blessing revealed in this conversation. When I mentioned that in Israel they commenced regular radiotherapy but because of the tumour's proximity to her optic nerve they moved IMRT (far more targeted) to avoid long-term damage, he said that Canberra did not have those facilities at present.

I also got to meet with the Neuro-oncologist. We had a long worthwhile discussion. One thing that came out of the conversation (another blessing for the day) was that he said had Maria commenced the next phase of chemo (which would have happened had the MRI been deferred), there is a likelihood she would have gone septic.

Canberra is a small city and known for its "one degree of separation" as the example from earlier in the morning testifies to this fact. Well, to put the matter to rest we discovered through chatting with the nurse caring for Maria during the day shift that she grew up around one of the areas we lived in and to bring it closer to home, her husband is one of the primary/elementary school teachers at the kids' school!

About 1:30pm Maria started to experience severe head pain and after an hour of other pain relief, she was not better. She was asked to rate her pain on a scale from 1-10 (10 being worst). She rated herself as a '10'. When you appreciate what she's been through over the past four months and I have never heard her rate herself over 8, I could only imagine how severe it must have been! They gave her a morphine injection. Her temperature was checked @ 2:00pm and was deemed high (38.4). The doctor took further blood (had some taken earlier) for 'culturing'. She said that perhaps a post-op chest infection was setting in, albeit Maria's chest sounded fine. I told that about our dear friend who after a number of weeks in a critical condition in Israel was medivac-ed to the US. She suffered from at least one infection that took a while to identify as it was from the Middle East. After this mentionand the fact that the Neurosurgeon believed the infection was possibly introduced during the original surgery, she said she'd have the infectious diseases staff speak with us.

At 4:30pm Maria had a chest X-ray. Funnily enough, I completely forgot to chase up the result. the nurse who cares for Maria is quite good at explaining things in advance. As there has been no changes to her medicine regime, I can only assume they didn't identify anything.

Eventually her pain subsided a little. She felt she would manage without further morphine for now. Her temperature @ 7:00pm had come down to 37.7. She was still feeling a little hot and cheeks a little rosy. I kept ice packs on her head most of the day for the swelling and the pain. On my last look before Maria feel asleep, the swelling was still increasing mostly around the left.

After about a couple of hours of sleep, I decided to sneak off and probably call in at some stage later to check on how things were going.

To my friends in Israel - due to the frequency and number of people I'm SMS'ing updates to on a daily basis, my phone bill is increasing at a frenetic rate. My plan now is to give a single update each day (still after 8am your time), unless there is a significant issue that requires immediate prayer coverage. Thanks for your understanding.

After sending this entry, I plan to sit down and look through the MRI and MRI Stealth (pre-op) as well as Tuesday's post-op CT. I am going to have a copy of yesterday's MRI burnt for me tomorrow, which will be interesting to see.

I established email and SMS contact with the Brain Tumour Alliance Australia (BTAA), the only national brain tumour patient and caregiver organisation in the country. One of the key members will be coming into the hospital tomorrow for some meetings, so we are both hopeful of a time of a meet/greet and coffee. In addition to the hyperlink, I've added BTAA to my 'web links' on the side bar of this blog.

Finally, I need to mention Maria's sister Effie, who has been doing a great job caring for the kids to free me up for the hospital. She has come into a role she is all too familiar with, having done the same thing travelling to Israel after Maria's initial surgery. On that occasion she stayed three weeks. She will probably leave Saturday morning. It has been a huge blessing for us to have her (and Brian and their kids to share her) for this time.