Ooops!

I mentioned in the previous post that I went and saw my GP due to my failing state of health.
I thought I might have an infection and he said if I did it was probably viral. I definitely had something as I felt like I had the "flu" but without the outward symptoms. Just the body aches and general Malaise.

It seems to have passed but my energy levels have dropped considerably. The Doctor had ordered some blood tests to see if I had something else that might be causing the constant fever. (I think it's what ever it is that's showing on my liver on CT scan)
Today I got an email from my GP. Here's what the tests showed..

"Hi Ron
Your blood count has dropped a bit (haemoglobin 121 and platelets 51), and liver functions are a bit up as well. Not sure specifically how to interpret all that. ?back to the specialists?"

I was a little concerned to see the low platelet count so I did some research...
What I found surprised me. Here's the background first... I'd been told by the doctors in Germany that I could safely take Ginkgo Biloba for the ringing in my ears (tinnitus) even though my platelet count has never been great. Then when I started running a constant fever six months ago I started taking one Ibuprofen every six hours to reduce it. Lately I've had to take two to get any improvement.

Ginkgo should not be used in patients with low platelet counts and Ginkgo and Ibuprofen should never be used in conjunction because they can cause serious bleeding/bruising or even brain bleeds. (That would explain the large bruise on my knee that I have no idea how I got!)

So with that in mind and coupled with my failing over-all health I've decided to go back on the prednisone as of today. This will remove the need for Ibuprofen and I'll stop the Ginkgo as well.
I'll schedule a blood test next week to see if that has improved things.
I'm expecting to be back to feeling 100% in about two weeks. (Ignoring the Lymphoma and Liver problems)

On a more positive note, The rebuilt engine was installed back in the race car on Monday night and dyno tuned on Tuesday evening by Andre at Speedtech. The power output is huge to say the least at 315Kw to the wheels. We will be running a modest tune for Targa to reduce the change of breaking something. If we need to run the high horsepower setup it's just a case of flicking a switch on the dashboard.

There's just eighteen days to go until Targa begins but there's still time to join the team and sponsor both the car and the Cancer Society. We have set up an account (below) in which people can donate directly into. The funds being split equally between the entry costs and the Cancer Society.

The account is "TLC" 02-0610-0058277-003 (any special instructions can be put in the reference fields)

Your support is appreciated ...Ron

Tired of being sick! Deja-vue

It's been a hell week healthwise, My fever which used to be controlled by taking just one Ibuprofen now barely reacts to two and is peaking a lot higher. I went and saw my GP about it during the week. My thinking was that I may have developed another cause for a fever such as an infection etc, and that maybe we should do some blood cultures just to be safe. He said "it's probably a virus" and left it at that. Bugger. However he did schedule a blood test for two weeks time to check for other possible causes of the underlying constant fever. Personally I'd say Lymphoma would be a safe bet!

Speaking of lymphoma..I've got a new lump ... well actually more of a swollen gland under the right side of my chin. It's the same lymph node that started it all off five years ago. I know this because it was cut in half when it was biopsied and the swollen "gland" is now inflated to an interesting half moon shape as a result.

I don't think I can stay off the steroids for too much longer without a significant reduction in my health. I'm soaking my bed covers at night with this fever and during the day I have no appetite and am constantly chilled to the bone. I think by next weekend I'll start back on the prednisone.
Once Targa is completed I'll stay on them until I see the haematologist on Nov 17th. Hopefully at that point we can start planning some more treatment. There goes my hair again!

Targa preparations are ramping up again after a lull while the engine was rebuilt, an exercise that cost a lot of money even with all the generous support of my sponsors. It may be time to have a clean out of my garage and sell some stuff I think!

Gosh another week gone by!

To think that this time last year I was posting twice a day from Germany. I'd spend hours writing my posts, because, face it, at the time there wasn't much else to do.
These days I'm flat out balancing my priorities between building a house, earning an income and getting everything ready for Targa.

The engine for the race car is being put back together this weekend and all going well should be back in the car and running by mid next week. The engine required a new crankshaft and some specialised machining work to bring it back from the dead. I'm very grateful for the support of Kerry Lyndsay Engine reconditioning for their machining and supplying the new racing crankshaft, Collier Motor Engineers in Levin for re-balancing the engine internals, and Pete Zivkovic for rebuilding the engine to his exacting standards.

The race tyres arrived this week too. It's like Christmas! Dunlop race tyres have supplied us with one free set of tyres and another at a heavily discounted price. Then Targa organisers sent me a GPS unit to install so they can keep tabs on the car during the rally. We are not allowed to go over 200kph at any time and in the Evo 200K comes up on the speedo very quickly. I've told Victor to punch me on the arm if he see's me going over this speed. Hmm.. on second thoughts being punched on the arm while steering a race car on twisty roads at 200+k's probably isn't a good idea!! ;)

We (the team) are still looking for a couple of big sponsors for the car/entry in Targa. We have secured a full page spread in the official program that is part of next months Classic Car magazine thanks to the generosity of the good people at Parkside Publishing. This ensures exposure to over 200,000 readers. If you want to be a part of this and get your company name out there as well as supporting our campaign and the Cancer Society, please drop me an email before next weeks publishing deadline.

Health-wise I finished my two week course of prednisone earlier this week and my fever returned yesterday.
I'm back to night sweats, fever and chills until I restart on the steroids again the week before Targa. It's amazing though just how quickly I gain fitness and weight when on them. I'm just hoping I can stay relatively well in the interim.

...Ron

a busy week..

It's been a week since I last posted, There's so much happening lately I hardly manage to keep track of the days.

I've been doing a bit of a trial run with the prednisone. Yeah I know the doc said I could have it next month while on Targa but I wanted to do a test run and see what days I feel best and over how long to take it. I started on 40mg a day for 4 days last week and then dropped to 20mg a day since Sunday. I shall finish the course this weekend. That will give me a full month before I restart again.

The results: The fever stopped within twelve hours. By the next day my temp had started to climb slightly in the morning but dropped again once the steroid had kicked in (I take them at breakfast). It now never moves much from a normal 36.5C at any time.
The 40mg dose leaves me feeling a bit "wired" but by the time I started on the lower 20mg dose I felt completely normal and well. My cough has completely disappeared too. The small nodes on my neck have shrunk down to around half their previous size.

I feel so good, one has to wonder why I can't just take these things forever.... sigh .You can't imagine what it's like to be sick and feverish for six months non-stop and then suddenly become normal again. It's certainly makes you appreciate every waking second of your day.

Workwise, the week started with an interesting job. A Rolls Royce hearse that I had been commissioned to engineer new rear shock absorber mounts on. It took a whole day just to remove the old brackets from someone else's previous efforts some thirty years ago. Then the next day was spent repairing the cracked chassis and making the new mounts. Working on a hearse was certainly a bit different than the race cars I'm used to working on..

Things are still moving along at great speed with regards to Targa. There has been one major hiccup though. The engine in the race car has worn out it's crankshaft and requires a rebuild. Luckily this was found now and not on day one of the event! I have had a small team of helpers dive in and save the day. Big thanks to Mark from STM for helping me pull the engine out and also to Pete Zivkovic who is doing the rebuild.

We have had a raft of new sponsors come on board, mostly relating to help with accommodation costs. You'd need to visit http://www.targalifechallenge.co.nz/ to view them all.

Cheers! ...Ron

Long talk with the Haematologist

I just got off the phone with Dr D'Souza my haematologist. It was a long conversation about the results of Monday's CT scan and what it all means.

Basically the scan did not show anything too scary. There are still the two enlarged nodes in my upper abdomen. Stlil not large enough to absolutely declare a relapse based on that alone.
There appeared to be some abnormality with the liver but this too was not clear.
The nodes in my neck were not big enough to be considered a sign of relapse.

Sounds good doesn't it. It's not really. The liver may be the cause of my constant fever.. it may not. Basically what a recent study has shown is that if the patient believes they have relasped there's a good chance they have. I believe I have relapsed based on the symptoms I have. They are identical to what I have had on all previous relapses (and I've had a few!).

We talked about having a biopsy on the nodes in abdomen, however they are still small and there's no guarantee that they can be located and biopsied successfully. I mentioned about my plans for Targa and he was aware of them. I said that as I have had no significant change in my health in the last six months other than the fever and cough, and weighing that with the CT scan showing no real disease progress, I'd like to leave things until early November after Targa before proceeding. He agreed that there wasn't much we could gain in the interim anyway.

We talked about my wish to take prednisone to reduce my fever and he agreed I could start the the prescription the week before Targa and continue them until the week after. This should at least offer me some degree of comfort while competing in the gruelling event. I couldn't imagine what it would be like to race for a week while running a high fever!

We discussed possible treatment options as well. In January this year I had a chemotherapy regime called IVE which wiped out all the cancer load I had at that time. I wished we had run to two cycles because it really worked well. Dr D'Souza said that IVE may be a possible palliative treatment given it's previous effectiveness. I agreed. It's still something I would not consider until maybe early in the new year based on how the disease is progressing (or not).

Then he mentioned a new drug that has just come onto the scene: Gemcitabine appears to show promise on previously heavily treated patients with refractory Lymphoma. This drug is currently not funded by Pharmac and would have to be funded privately at around $4500 a cycle, but that may not be too much of a problem and I have health insurance which may help.

So where does this leave me? Hmmm not sure. Probably back where I was five years ago, only with a slightly more treatment battered body. As the doctor and I both agreed on before we ended the conversation, I could be around for a few more years yet if the disease stays at a passive level and we keep on top of it. And that new drug looks promising!
There's always hope. No scratch that! There is only hope. Without it there is nothing. Positivity isn't an attitude, it's my reality. I have no room for the negative.

Sorry for the long boring medical post, it's my way of documenting my journey. Thanks for coming along with me :)

http://www.targalifechallenge.co.nz/