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Prednisone down to 20 mg per day. Monday was a big day with Eric and Eve as visitors and Kim and Geordie, Maree and Robin staying the night. Seem to have some issue with my gut - had constant pain all day that eventually took us to the doctor in Kaeo on Tuesday, who, apart from telling me I was a "skinny bugger", didn't think there was anything amiss. My main concern was that I had a blockage of some sort. Whatever today (Wed) it seems a bit better. Haven't had any painkillers for 14 hours and the pain is there but much improved on yesterday. Any hint of it gettng worse and we'll be in the car. I suspect it is just general bowel irritation from trying too hard to keep my roughage up.

Don't you hate the way people go on about their bowels when they are sick?

Have a bit of neuropathy in my left hand.

If the last week represents the worst that chemo will do to me, I can live with it. Even if my hair does fall out.

Up at 6:30, a walk on the beach, a swim, then the 2 hr drive to Whangarei for my sister Dianne's 60th. She didn't get to jump out of a plane as planned - the weather didn't cooperate. Big day at Dianne and Dwights with all my cuzzies (<a href="http://public.fotki.com/rossmcm/ross/diannes_60th/">lots more pictures here</a>) and then drive back to the most beautiful place on Earth for a swim.


Prednisone back to 60 mg per day now, better sense of taste. Keeping away from the Maxolon and feeling soooo much better for it. No pain killers all day either.

<b><red>WARNING</red></b>. Contains mundane material, medical stuff, and probably unnececessary detail. I want to have a reasonably detailed account of my first cycle so I'm better able to deal with the subsequent ones.

Things I have learned about the first few days after chemo (will not apply to everyone, suggested serving only, if pain persists, see your doctor):

- Don't take long trips in the car and expect to enjoy them. It's better to drive than to be a passenger.
- Don't take Maxolon (anti-nausea drug) unless you really need to. The side effects (restlessness) are awful.
- You feel better after moderate exercise.
- Try not to nap during the day. It feels awful when you wake up.

As of today I have started to reduce my Prednisone. It will taper back to nothing over the next 2 weeks which is when I start the second cycle. I'm assuming its the Prednisone that causes my general rat-shit feeling, which is hard to describe, so I'm looking forward to feeling better.

There is no question that things are happening inside me. The original intestinal pain that lead me to the doctor has all but gone, suggesting that the tumour in my small intestine has shrunk more than a bit. Similarly, a lump on my back from a lymphoma on my 12th rib is smaller. It's probably coincidence, but the pain in my gut stopped the day after the Mabthera treatment. If it's not coincidence, then it's bloody encouraging.



The bay is beautiful at the moment. Jim and Deb arrived yesterday, K and Joss last night, ate a beautiful meal of fresh schnapper caught that day and donated by Barbara and Morgan Piripi, who are staying in the St Johns cottage next door.

Had a swim this morning, which helped with the morning blues. After lunch had a really bad attack of the twitchies - couldn't sit still, major gut discomfort. Can't find anything on the web about the restlessness being associated with Prednisone, so I've concluded that it really is the Maxolon, and I'll steer clear of it unless I'm really troubled by nausea, (which I haven't been). Took a painkiller for the stomach pains and have been much better.

More photos from our Xmas with Shurli, Jim and Deb can be seen <a href="http://public.fotki.com/rossmcm/ross/xmas_2005/">here</a>.

I did promise updates only when interesting things happened. It's 5am, my Prednisone alarm clock has just woken me up. I got a bit down last night and it's forced me to evaluate why I'm writing this stuff. I don't really have any idea (is it for me, you guys, other Lymphomaniacs, curious onlookers?) but if it's to be honest it needs to include the warts and all.

I guess my secret hope is that we will look back on this in 20 years and laugh as we read it.

Up until now I've been pretty upbeat about this whole thing (after the first couple of days after diagnosis passed, which were <b>NOT</b> good for either of us mentally). Yesterday was the first "day after chemo" day and they did tell me at haematology that it's probably as well not to go to work that day or try to do too much.

So I went to work, had a couple of games of pool with brother Jim, ate good hearty meals, drank my 3 litres, had a couple of walks in the sun, went shopping for floor coverings with Dee, watched two movies - tried to do what I would normally do. By bedtime I was a tearful wreck. What I don't know is whether it's because Prednisone is supposed to give you mood swings, or because the whole thing is actually kind of depressing anyway.

Today I will take it easier. I'm going to the funeral of a fellow barbershopper and then Dee and I are off up to the bay for a few days break, and to celebrate my sister Dianne's 60th.

Had the real deal today - the four drug combination that makes up CHOP therapy

<b>C</b>yclophosphamide (brand names cytoxan, neosar)
Adriamycin (doxorubicin / <b>H</b>ydroxydoxorubicin (ref))
Vincristine (<b>O</b>ncovin)
<b>P</b>rednisone (sometimes called Deltasone or Orasone)

along with anti-nausea and anti-histamines.

It's now midnight and I seem to be no less the worse for wear, having just completed my usual stroll around the block.

Had my bone marrow biopsy, and the first day of Mabthera, lots of visitors. The Mabthera is given slowly at first, in case there is a reaction (the stuff is made from mouse cells apparently). If no reaction they speed up the rate. I didn't have any problems, apart from a little localised itching, and growing a tail.

The bees that arrived 2 days ago have moved on.

Day before chemo starts. Had a visit from my nephew Richard and his sons Eric and Dean.



Also had a visit from several thousand bees, who have decided to park in our conifer while they find another home. They are very well behaved, but show no signs of wanting to move on...



Perhaps it's an omen.

I start my first session of chemotherapy in 2 days. The last few days have been a bit of a whirl with lots of relatives and visitors here for the Christmas holidays. Saul and Jo are coming over tonight to cook us a meal, and we'll probably blob out with a video.

On the first day (Monday 9am) I will have a bone marrow biopsy to see if the lymphoma has affected the bone marrow. If it has, then they need to check the marrow again at a later stage when assessing the course of the treatment. Then the whole remainder of the day will be spent receiving what is called Monoclonal Antibody therapy, which is better able to target the tumour cells. It's quite new, and the initial clinical trials were so encouraging they stopped the trials early and just started treating people with it. It's also not cheap (like $20k) so we're thankful for the welfare state on that one. You can read about this <a href="http://www.cancerbacup.or...odies/Rituximab"> here</a>.

On Tuesday I start the chemo proper.

<b>STOP PRESS</b>. Fotki seem to have a few bugs in their journal software. If you notice that it doesn't look current, or you can't see your comments, you might like to try this link: <a href="http://journals.staging.fotki.com:8080/rossmcm/2006/">http://journals.staging.fotki.com:8080/rossmcm/2006/</a> instead.

<b>On Christmas Eve 2005 I was diagnosed with lymphoma, specifically it's an <i>agressive diffuse large B-cell Non-Hodgkins Lymphoma</i> to give it the full title. While it's a scary-sounding thing, it can be one of the more treatable lymphomas, but then again each one is different.

While I'm not one for making a big deal of all this kind of stuff, my sister suggested this journal might be a good way of keeping people in touch with how things were going for me, rather than us having to send out regular emails or make lots of phone calls. Anyone can read or add comments. I promise to keep it up to date if people are reading it. The chemo could last up to 6 months, so I don't intend updating it every day, just when something interesting happens.</b>