2008-09-29 -- Chemo #5

So this is the start of the 5th session of chemo if my reckoning is right. One at the AKH and now this is the fourth here at the Döbling Private Clinic. So three more to go after this, except that they may do more sessions as the dose was lowered last time and remains low this time too. I asked the oncologist (he is really nice and friendly -- and answers questions) but he said it really depends on my bone marrow and how fast it can regenerate platelets.

The room is not as nice as last time but it's OK -- it is cold though, which has always been true of all the rooms (or it's me, going from 90 kilos to 57 does lose an amount of padding and inulation) -- there is a temperature control which goes from '+' to '-' but nobody knows whether '+' is more heat or more air conditioning (i.e. colder).

We seemed to start off slow, so I am only on the third bottle of whatever it is, and this at 19:30. This, like the first one, has the 'Vorsicht' label stuck on it so I guess it is the real stuff. The second was saline solution I think.

My blood counts are still not good so I'm getting two bags of someone else's blood whilst I'm here. By the way, Dr Bach (the 'Guardian Angel' was here when the nurse came in to tell me about the blood transfusions and why. She did that in German. I said I didn't understand so Dr Bach said it in English and I still didn't understand! It wasn't the language -- it was the medical terminology. When they said it in plain English (or German) I was fine. This is a revenge on me for being a computer person -- we do this to others with our jargon.

Had a strange feeling earlier, one I haven't had for about a year. There was a mix-up over my midday meal (no reason, I was here at 10:00 and saw the dietician almost immediately) but anyway I didn't get my meal until nearly 14:00 and I was feeling hungry! Haven't experienced that for a long, long, time! Been mostly on drip feeds or dosing myself at regular times with yogurt just to keep my weight up, and never eating either for fun or because of hunger.

Asked Dr Bach if she thought I was right in postponing the mouth operation (now it is only a correction to my speech and eating ability rather than a medical necessity) from February to June so I could do the Webster courses (and the Inter-Agency Games thing). She said I should try to live a normal life as much as possible and said if I didn't mind the yogurt diet then I should go ahead with Webster -- she said my speech was understandable enough, and getting back to doing what I did before was more important. She's about the only person who understands my feeling of preferring to teach my classes than get back to real food. Of course I'd prefer both immediately, but it is clear that won't happen.

At home my burst of energy that suddenly sprung up about two months ago is still there. It is so good to be feeling so energetic. The dry mouth is a nuisance at night, but it has been worse and I have come to terms with it. Then to confuse things, in the day it is the opposite, it is floods of mucus every now and then, no predictable pattern I can detect -- this is an effect of the the chemo apparently. But these are little things compared to some of the other things over the last year and they are easy to live with.

While I'm not at all being pessimistic, I'm aware that my life expectancy is not infinite and is probably less because of the cancer, and particularly the metastasis to my lungs. I want to get as much as I can out of what time I have. I also want a lot of time of course! And there is no real reason for despair, but getting the most out of each day seems a sensible tactic (and it gets things done and is fun).

Am I have been doing lots since I was here in the hospital last. Most important is that I'm teaching again. It's just one hour a week and only two weeks out of three (to allow for chemo) but it is real -- me in front of a class. And I do love doing it! Am doing Word 2007 for the staff of Webster University (I teach student classes there but had to cancel two because of the operations and long recovery periods) and so am especially pleased to be back. Spent days on preparation and was worried about 'The Voice' but it seems to be going well -- certainly I'm having a ball.

Then there is Spring Cleaning (I am obviously six months out of phase) -- I am really having a major tidying-up drive, so the flat is looking so much better, though the study has a way to go still. Getting really obsessive about it -- sit down in the evening to watch a DVD or read and I'm jumping up every few minutes to rearrange something.

And I've been active on the computer, setting up for the InterAgency Games next May/June (I do registration so it is early but not that early), doing the Cinema Club, and keeping one step ahead of the training I am doing for the Webster staff.

Enough for the first day in hospital, been on the computer long enough!

David

2008-09-15 — Newsletter — Good News

Dear All

Today was a day I'd been somewhat dreading. I had a check-up scheduled at the AKH (the General Hospital). This one was with the mouth surgeon Professor Ewers. The reason for the appointment was to check the problem with my jaw caused by the radiation last year.

The necrosis (horrible word, sort of a "I'd rather be dead than have necrosis" type of word) was being treated with long doses of antibiotics and this was the acid test — had anything improved?

And the answer is YES! The problem has gone away. The open 'sore' (it didn't hurt but apparently was an open thing) has healed completely. This is an enormous relief, as the worst case scenario, had it remained, was a bone transplant —- replacing that part of my jaw with bone taken from somewhere like my thighbone. This is how I understand it anyway.

But now all is well and I don't need to see the surgeon until after the chemo has ended, and that just to discuss the timing of the much smaller operation to free my tongue and correct my speech and allow me to eat something more substantial than yogurt.

That operation though will not be possible at earliest January or February as I'll need time to get properly in balance (chemically that is) from the chemo. In actual fact it will much more likely to be much later — June is a probable month — as I have two classes scheduled at Webster University for March onwards and look like being involved in the UN Interagency Games after that.

My feeling at the moment is I'd rather have a longer period without chemo and operations and be able to do the thing I really enjoy which is the teaching. Eating yogurt for a couple months is a price I can handle.

Got home this afternoon and checked my mail. There was a letter from the Finance Ministry. I've never yet filled in an income tax form in Austria (didn't need to when I was working tax-free, but the Webster income is taxable — Webster deducts tax, but only relatively recently) and I've had a background feeling of foreboding that someone is going to catch up with me.

So with fear and trepidation I opened the letter and they owe me €167 and want to know how to pay it to me!

It's cold and raining in Vienna, but from my side today has been a great day!

I am hoping the new chemo schedule and my reaction to it goes smoothly from now on and so don't expect I will have anything dramatic to send out in a newsletter for quite a while. I am working (very slowly) on filling in gaps in my blog (my on-line diary) and it can be accessed, should you have any interest in it, from my main web site www.misterwhite.info — I am planning on putting some photos and even some sound recordings on it, but have so many other things I want to also do. It is so great to have recovered my energy and enthusiasm.

Many thanks to you all for your prayers, thoughts, visits and good wishes

Love to you all

David

2008-09-10 — After Chemo #4

I had the fourth session from the 8th to the 10th. They lowered the dose yet again, not because I was feeling bad — I was feeling really great considering — but because of the values from the blood tests they take regularly.

The other change, because my body just doesn't seem to be very good at handling these types of poisons, is to increase the interval between sessions from every two weeks to every three weeks.

This change means that the last session will be early December, unless they add more sessions to compensate for the lower dosage, in which case it will go on longer.

But I felt good, the room was the best I've had at that hospital, the nurses were friendly and helpful and all in all the three days were a little like having a mini-break holiday!