Wellington Hospital: A great weekend getaway!

I guess I can't complain too much, It's been nearly three and a half months since I last had a needle poked into these chemo-shy veins.
There were no surprises when the young female Asian doctor couldn't find a vein, and even less surprise from me when she resorted to finally placing the cannula in the back of my hand. Some things never change.

Sooo it's back to the surreal world of chemo drugs, IV's, hospital food and boredom.
Only this time I have the added bonus of sharing my world with three other people.
I haven't had a chance to talk with any of them yet.. maybe tomorrow.
All I know is one of them is called Mr King and in the bed beside him is Mr Kong.
The other man's name escapes me. (I stopped listening after the first two names were relayed by the nurse just in case her brand of insanity was spread by aural exposure)

The foods OK, no real surprises yet. Lunch was those fake cheese sizzlers, but minus the cheese, and cut up into chunks and coated in a tomato and onion sauce. Dinner was beef stroganoff, ice-cream and jelly.
I'm guessing Mr Kong had the sans-cheese sizzlers with the onions for lunch as he has so far today managed to pass wind at what I can only describe as being of an Olympic standard. He has punctuated the air all afternoon with five second blasts of wind and noise that would put a klaxxon to shame. Sometimes he even did it mid sentence while talking to the doctors. I wonder what the medical term is for a man that talk out of both ends at once?

My doctor gave me some info sheets on the chemo drugs that they are administering.
Usually I would look up the drugs on the internet and study up on all the side effects etc. Perhaps I'll do it later because the info the hospital gives is exactly the same for all three drugs!. Hair loss, mouth ulcers,nausea, low blood counts.
However one of the drugs, Ifosfamide, has a really odd side effect.
The fact sheet states that although sperm production generally decreases with chemotherapy, some men may actually become more fertile after treatment than before! How the heck does that work? Do the little guys get really pissed off by having their
ranks wiped out and go on a recruiting drive ? Bizarre.

Another of the drugs side effects is hallucinations. The fact sheet advises that if you have any you should advise the doctor immediately. Thing is.. how would you know if you'd actually had a real hallucination? what if you just thought you had one? and what if you hallucinated that you told the doctor? and would a doctor with blue skin and eight legs know what to do in such a situation? Maybe I'll just keep them to myself for now.

Almost normal..

This is what I figured remission would be like. No symptoms of my disease at all. No back-aches, no night sweats, no feeling unwell.
If I felt like this before going to Germany I probably would not have gone. However I have a PET scan that says I'm not in remission.
Just some sort of low in my lymphomas activity.

I've been back on full duties at work. It's been over a year since I last picked up my tools and worked a full-on day. Last week I was flat out doing all sorts of engineering work without the slightest bit of fatigue. ..and yet I'm just over two weeks away from having salvage chemo. It just seems so bizarre to be facing such an intense period of treatment when I feel this good.

My dry, choking cough is now a permanent feature and I cannot talk without punctuating every sentence with a cough or two. It still drives me nuts!

My stem cells arrived back in NZ late on Friday night. The staff at the cryopreservation lab at Wellington hospital would not have been happy as the shipment finally arrived at 8:40pm according to the delivery report. They will be tested to see if they have degraded in any way. I have been waiting for the stem cells to arrive back home before posting here that I discovered that the documentation from Germany had been filled out retrospectively and therefore was very suspect. I informed the team handling my transplant as soon as I saw the falsified documents. They have said they will dispose of my stem cells if there is any doubt as to their viability. (Why is it that at almost every point in my treatment there have been these sorts of dramas!! ??)

I have a busy few days at work next week before I take a break for Christmas. Kurt left for his holidays on Friday last week and will take over running the workshop until I return at the end of my treatment. I might be OK to do some light duties, I may not, Who knows. Same goes for my motorsport.. I will miss the opening two rounds of the 2009 Duncan McKenzie series, Port rd and Mount Victoria hillclimb.
I have dreams of jumping in my car and doing one single run at each event, possibly before collapsing in fatigued heap. I'd need to have safe blood counts before I could even entertain the thought of entering.. I probably need to face facts.. I won't be racing for 3-4 months, But I never say never!

I'll next post once I'm in hospital from Jan 9th. I'll be there for 4-5 days.

Meanwhile..I hope everyone has a great Christmas and a relaxing holiday break!

The plan...

I had a meeting with Dr D'Souza this morning. It started in the middle of the car park, where we had bumped into each other, continued through the underground car-park into the lifts and down the corridors. It was he who instigated the conversation, most Doctors don't like to talk to patients outside of their allotted time-slot.. That little fifteen minute time-slice that you often have to wait two to six weeks to obtain. So I didn't feel bad for talking out of class.

Once seated in one of the rooms he laid out the treatment plan.
Jan 8th I go into hospital and receive one cycle of IFE salvage chemotherapy. The salvage chemo will reduce the cancer burden in preparation for the high dose chemo with stem cell rescue that will follow about 3-4 weeks later. It will also increase the chances of getting a good stem cell harvest. We start mobilisation shortly after the chemo. Mobilisation refers to stimulating the growth of stem cells in preparation for harvesting. This involves being injected with large doses of GCSF growth factor. Basically the same growth factor I was given to stimulate my white blood counts in Germany but in much higher doses.

I was surprised to find out that I won't be stuck in a hospital bed for the entire time. There are several short stays, but most of the time I can stay at home and be driven (or drive myself, but don't tell them I said that!)into the hospital every day for tests etc. The exact dates have yet to be confirmed, I'll be getting an email in a few days with the full treatment schedule.

I've booked the couriers to pick up my stem cells from Germany. They should arrive back mid next week. I've conveyed to Dr D'Souza my doubts over the viability of the old stem cells and he said that they will be tested on their arrival and if they are not up to spec they will be disposed of. Hopefully we get a really good harvest this time and we won't need to use them anyway.

Health-wise I'm still in good chape. I was having the occasional single bottle of beer after work on these warm summer evenings but I started to get a slight back-ache so have now decided to do without. My cough seems to be worse, it drives me nuts. No night sweats in ages.

A quick update

I seem to be in a holding pattern at the moment.
I've had confirmation from Dr D'Souza that we will start mobilisation of my stem cells in early January. This means I'll probably be re-harvested about two weeks after that. There was no mention of salvage chemo in his email but he did say that he would discuss the finer details at next Wednesday's appointment.

I finally managed to extract the documentation out of the Doctors at the Leonardis Klinik in Germany. They seemed to use every excuse they could find to avoid sending it. Considering they originally told me it was all ready to go when I left Germany two months ago you have to wonder what they are up to.

As soon as the cryopreservation people at Wellington Hospital let me know when they are ready to receive the stem cells, I shall organise with World Couriers to have them shipped back. I have a suspicion that the cells will turn out to be not viable once tested. We shall see...

Health-wise I'm in good shape. I have been walking with Sarah most evenings and on others I either run or walk on the treadmill. Every morning I try and do as many push-ups as I can and I've gone from struggling to do just one push-up two months ago to now being able to complete twenty most mornings.

I no longer suffer from night sweats or back aches and the only obvious sign of my disease is the constant cough. I remember back in December 2006 when my stem cells were being mobilised for the first time, I had exactly the same cough. My breathing was a lot worse back at that point and my health was worse too. I think it's a real blessing to be feeling this good two years down the track. If I had not undergone any of the treatments I've had, despite the fact that they have all ultimately failed, I'm fairly sure I would be dead by now. So at least they have kept the disease relatively at bay, if not actually made me better off than I was back then.

I'll post again on Wednesday after seeing the Doctor.

Shelly Bay Sealed Sprint.

Wow!! What a day!
In my last post I spoke about my goal of breaking the record for the annual Shelly Bay sealed sprint. Joe McAndrew set it back in 1996 in his Pro_drive Subaru Impreza at a time when he was the NZ rally champion.

Today I broke his record on all three of my timed runs, culminating in a 1:11.92 final run. Exactly the time I said I'd like to achieve in my last blog post! I'm absolutely over the moon with the result.

Over the last two weeks I've made several changes to my car, mostly around the suspension. When I first went out this morning for my practice run the car was very skittish and was jumping around at speed (180kph) on bumps. I almost felt like taking the car back to the workshop and un-doing all the changes. Luckily I didn't. Deciding instead to try lowering the tyre pressures and softening the rear shocks.

The changes worked and the car has never felt so positive when cornering. Where previously the car would 'push' towards the outside of a corner at speed, it now corners like a train on rails.
Only the tyres are dictating my position on the road and they seem to slip equally from both front and rear, making the car very predictable and easier to drive. Better tyres are now on my wish list.
The car just got a new set of race tyres but they don't seem to work as well some of the other brands I've seen. Oh well they can't be too bad if I'm breaking records!

I took a passenger on my last two runs, Sarah was first out and I think she got a reminder of why she hasn't been in the 'silly seat' for over a year. She seemed to be most terrified as I approached the Light-House hairpin turn at 180kph and didn't appear to be in any hurry to stop. The huge Brembo brakes fitted to the Evo are capable of stopping the car in an insanely short distance. Next out was family friend Lara, who got the privilege of being along for the record setting run. She can now claim to have been driven over the road between Scorching and Shelly Bays faster than than any person on the planet.

I've posted some new video footage on You-tube. It can be accessed via the video-bar on the right side of this page.

Meanwhile I'm going to have another beer and celebrate!

..Ron