Monday, 20 May, 2013. 3:45 PM.
We're home again, glad to be in front of the warm fire as there's a nasty, sneaky westerly blowing and no warmth in the sun.
In spite of our best efforts, the protein level has gone up again, from being what we'd class as very high into the mid-level of the serious danger zone. I was hoping it would stabilise somewhere near what it was last time, but it's about 30% higher than that – but anyway, it's pumped in and now we see how we travel.
By the hospital scales I have lost more weight, though it's not visually apparent, due mainly to lost muscle. I have to work harder on keeping what declining muscle strength I have. The bedpole becomes my 'pull-up' fitness machine for upper body, and the walker is my stable knee-bends-and-flexing gadget for lower body. They aren't up to the task [or I'm not] but I believe they help to stem the tide a bit. I'm very wobbly on my feet, even with the walker, and take moving around with extreme caution. But it's important to keep doing so.
The very cold weather makes things harder to cope with, so I'm in the lounge with the fire a lot. Tracey is as usual working her butt off to make things as good as they can be for me.
The main question is what sort of seizures we might expect day to day this three-week cycle, and whether one will become serious enough to need hospital treatment. As long as they last not more than a few minutes and don't affect critical organs/spots too much, and if I have enough mobility/strength to do the necessary, then we can cope.
We have all the medical/official clearances necessary for appropriate levels of care, right to the highest. These are important matters to sign off on before an emergency happens, rather than after.
Sunday, 19 May, 2013. 9:40 AM.
Weekly roundup. I suppose I could detail the frustrations of the care-receiver for the week, but it wouldn't serve much purpose. These are common to all who find the simplest of tasks now a major operation or impossible, but have no wish to call in the care-giver, who may be trying hard to get a little peaceful sleep at 6.30 am. It gets increasingly like that as yet another function goes. So that's all I'll say about that.
I've had a few minor "normal" seizures for the week, and one disquieting one of a different type. I'd had the feeling of a throat obstruction for a few minutes, or how you feel when you're suddenly aware you're in for a serious throat infection. I began to cough and then felt the "iron-band" effect on the right arm muscles for a minute or two, and then it was all overtaken by a constriction of the throat muscles. Although it seemed like all muscles for the throat were involved, I imagine it was really only half of them – on the right side. This made it almost impossible to speak.
Clearly this area is the next under constant attack.
I realise now that a creeping paralysis is occurring. The toes in the right foot became unresponsive, then the ankle, then the knee joint. The thigh joint is still functioning but responding less. I am trying to counter that by moving all joints as much as possible, but it becomes more and more difficult.
Avastin is scheduled for tomorrow. As usual, we play the wait-and-see game following the PTU test at the end of last week to find out whether it can be administered.
Thursday, 16 May, 2013 12:30 PM.
The PTU sampling has begun and won't end till 7 am tomorrow.
Lying on my back for longer periods, I now have to be careful about my heels, which develop redness and soreness quickly. What's needed are the pressure changes that come naturally with walking and moving around and, of course, cream applied at least twice a day, and keeping the heels free of constant pressure.
This is something that must be prevented rather than tackled after a real problem develops, as it is extremely hard to deal with after the damage is done. Therefore I must exercise to the limits possible just to create pressure changes on the soles of the feet, apart from the other benefits of exercise.
I have been free of major seizures for most of the week and am hoping that continues as long as possible; at least until the scheduled Avastin on Monday.
Once again this shows how impossible it is to see patterns in the three week cycle. Obviously all that matters is when the tumour decides to become active, and we have no seismograph for predictions, unlike with earthquakes. It seems that that's at least once in the three week cycle, but when is anyone's bet.
I become increasingly irritated with my growing lack of ability to do things for myself. I won't detail the little things that we all do without thinking about it under normal circumstances. There is no defence against this; I just try to do them myself, and usually succeed but only after intense effort and come out of the bedroom looking like thunder – poor Tracey wonders what the hell she might have done to deserve such a look.
All she's done is not be able to do the impossible – cure the ailment. What a crime!
Sunday, 12 May 2013. 9:55 AM.
It was a week that had its highs and lows, with a down phase towards the end of the week, but seems to have plateau-ed out. Although the night was disturbed, it wasn't because of seizures; just restlessness. I wrote a blog posting draft that will come to light by and by. In the fullness of time and all that. Not enough sleep has left me with foggy head syndrome, so I might be spending some time today catching up.
Saturday, 11 May 2013. 10.05 AM.
Yesterday was not a good day. I had a succession of seizures, one strong one and the others 'routine' in strength and length of time, every couple of hours up until 6.30 pm. Being at the limit of the current anti-seizure meds, I cannot do more with them.
We got a prescription for Gabapentin, and I used one of those last night for the first time. If you click on the link on the name of the drug above, you will understand why we are reluctant. They are to be used three times daily.
I tried the first one last night. I have not had a seizure since, but we are suspending use of it without taking a second. Its main effect was to make a fog descend on my brain as the evening progressed. I slept heavily and, Tracey tells me and I don't doubt because of the Sahara Desert in my mouth and nasal passages when I woke, I snored like a steam engine all night.
I can't remember when I had my last hangover, but I think it was the morning of the day after my 40th birthday, a day in which, at about 2 am, I was seen to be striding purposefully with a bottle of champagne away from the giant bonfire we had built for the occasion in the direction of what I believed to be my house, but was actually in the opposite direction towards the dam. I was gently steered to bed, where I probably snored just as impressively as I did last night. The hangover was both unpleasant and salutary.
I felt somewhat like that this morning, and when I tried to walk, it was more difficult that usual. As I've said before, after any seizure I am weakened physically, but after a first-time experience of a long succession of them, the suddenness and extent of the weakening is hard to come to terms with.
The hangover effect, however unpleasant, is not the primary reason why we're suspending Gabapentin. It has a corrosive effect on the kidneys [and other organs], and I'm due for a proteinuria test on Thursday. I believe it could affect the result badly, and I do want this shot of Avastin on 20 May.
It is also possible that the seizures may have stopped without it, as they usually do for a day or two anyway. But the succession of them yesterday was so unusual that we had to try something to rein them in.
I am prepared to put up with seizures, if they are no worse than they were yesterday, at least until after next Friday when the 24 hour urine test is completed.
So we make our decisions. We don't look backwards. It's been that way from the start. We learn from experiences, but we have no time for what-ifs and if-onlys.
Thursday 9 May 2013. 10:00 AM.
I had the first seizure of this 3-week cycle [6.00 am] following the one just after Avastin was given last Monday week. It was not too strong and appeared limited to right arm. It left me feeling very washed out, which is 'normal'.
That appears to be the most regular sort of pattern now. A strong seizure just after infusion, followed by a period of grace of up to 10 days, and then until the next infusion, an almost daily seizure of varying strength. There is usually one serious one, maybe two, and several 'post-quake' tremors. If so, I can expect more in the next days till next treatment on Monday, 20 May. The best we can hope is that they are not too severe, because each certainly damages limb response.
I hope we can keep the protein level down for the next 24 hour test starting a week today.
Thus is my life governed by 3 week cycles. I'm feeling I can identify with being a woman in that sense – but on steroids. Hang on – I am on steroids!
No major dramas, we hope, and no falling over....
Wednesday 8 May 2013. 11.55 AM.
Alice and Sylvia are boarding the flight to Sydney on their way back to Melbourne. It's been a good time and a special one. At the rate my leg strength is declining I very much doubt I will be mobile for much longer, so it was the right time. Is spite of my efforts to keep their strength, the power to summon up that strength is disappearing. I tell the toes on the right foot to lift, as the left ones do, but there is no response. I cannot trust the right knee. This is not a matter of physiotherapy; I wish it were.
It becomes increasingly difficult to turn over in bed, though the bedpole over the bed is my saviour.
As you can imagine, mobility is very important to me. Losing it changes the entire ball game.
I have had no more seizures since the one on the night after getting Avastin more than a week ago. I put this down to upping the Keppra dose and not doing something like falling over. Nor have I had headaches. But I am sleeping more, and heavier, or so it seems, and I find less and less time to do the things I want to.
Apart from the litany of complaints above, I am relatively comfortable.
Sunday, 5 May, 2013.
A very brief roundup today as Alice and Sylvia are here and we're making the most of the time. Things are pretty much as I reported on Thursday. All quiet on the seizure front. Ankles remain un-swollen. The only negative thing is the continuing decline in functioning of the right leg. This makes it harder and slower for me to get about, and I need to concentrate on each movement. Strength in my arms remains. I really need that as the legs weaken. Oh – more red spots are breaking out which is usual a week after Avastin.