Why I should never forget to take my prednisone...

This morning I forgot to take my pred.

It was about 11am before I realised it and I was out at the time. I wasn't completely sure I'd forgotten but I figured that if I got a couple of aches and pains I'd know for sure and then I'd take it when I got home.Bzzzzztt!!  WRONG!

By 11:30am I was racked in pain and my legs were not working properly due to the pain spasms in my hips. I barely made it home, driving was very difficult.
I fell in the door, grabbed my 10mg dose of prednisone as I passed the kitchen and then downed some paracetamol and nurofen as I collapsed into bed shivering and writhing in agony.

Two hours later I was finally able to crawl out of bed. It's now five hours since the pain started and I'm still feeling nauseous and weak.

I will not do that again. Next time if I think I have forgotten I will just take the them anyway. It's better to double dose than live through that nightmare again.

and I used to say "a little bit of pain never hurt anybody" obviously I'll need to re-think that one.

Right! No time to lull about being sick... I'm off to save Apollo 13 from imminent doom..  ;)    See link below)

http://www.downstage.co.nz/index.php?page=shows&id=105

Mi Goreng, Marriage, Motorsport and medicine.

OK firstly a word to the wise: Don't try and eat 2 minute noodles and write a blog wearing reading glasses at the same time. You only end up trying to type one handed and drip noodles down your clean shirt while struggling to see through steamed up lenses!

A combination of age and steroids has deteriorated my eye sight quite rapidly in the last year. I now have to wear reading glasses to use the computer despite a 19" screen, and I haven't been able to read a menu at a restaurant in quite some time. My long range vision is still OK, but if I wear my glasses there's a definite improvement.



Anyway.. On to more important things!  On October the sixth, while on holiday in Taranaki I (finally) asked Sarah to marry me. It's something I'd been planning for quite some time, but was waiting for my health to improve before taking the plunge. There was little fear that she would say no as she has been making subtle remarks and rumblings for a few years now. However she really didn't expect me to ask and was pleasantly surprised (read stunned) when I asked her as we lay in bed enjoying the Lake view from the little private chalet we were staying at on the shores of Lake Rotorangi, about 20km out of Eltham.

Sarah had spotted a beautiful little diamond ring in an antique store in Eltham the day previous and showed an interest in it but decided she couldn't justify the expense as an item of jewelery.

So for me that made choosing the ring easy :)  We just stopped off on the way home and I purchased it.

We are planning a quiet wedding at home on December 18th attended by close family, followed by a party that evening for extended family and friends in which we shall celebrate the new house, my good health and our new life.

As mentioned in my last post I've gotten back into my motorsport and last weekend I drove the Evo at the second round of the Port Road sealed sprint at Seaview. This is an event that I have done quite well at in the past, but have also done terribly at too! Crashing back in 1995, getting hopelessly lost on several runs a few years back and doing half the track twice... not good if you want to post a low time!

I first won it in 2006 and have won it a couple of times since including last weekend's event.
However my times, like at Shelly Bay were down on what I've been capable of in previous years. I put this down to a heightened sense of self-preservation and a little bit of rustiness (if there is such a word).

Back in 2008 when I was doing a lot of competing around the country I was right at home with the 320kw that the car produces on high boost and I set a number of records behind the wheel.

Last weekend the sheer brutish power of the car scared the pants off me and I never really felt comfortable. Perhaps with more time behind the wheel I'll get back my confidence. I hope so.

On the health front I'm pretty good. Well today I feel great. I have a couple of small niggles that remind me that there's a small lymph node in my left side pelvis that is sitting possibly dormant but ready to burst into life should it choose to. I get a few aches from that region every now and then and that unsettles me. My skin feels prickly/itchy all the time, but it's not a deep seated itch like typically occurs with Hodgkins. It's just annoying enough to remind you that something might not be right. However I feel nothing like as bad as when I definitely have active disease, so I just remind myself of that and go about life as normal.

The weening down from the dreaded prednisone however continues. I'm now down to 17mg a day. I should be off it in 18 months at this rate. The horrible thing about weening off is that my body aches constantly and some days the pain is quite severe. I seem to live on a diet of paracetamol and Ibuprofen. Today the aches and pains are quite tolerable. I shall enjoy the normality while it lasts.

Here's something vaguely interesting.. Take a look at these images of me taken over the last five years at various stages of my treatment and recovery. I can hardly reconcile some of them as being of me, the difference in my perceived self image and reality is that great.

November 2006 feeling OK



December 2006 stem cell harvesting



December 2006 realatively well






May 2007 chemo







Sept 2007 end of chemo



















December 2007 hair regrowing (again)



March 2008 prior to radiation treatment

















April 2008 Ravaged by Radiation Treatment





May 2008 post radiation







 





July 2008 recovered from failed radiation treatment.







August 2008 about to leave for treatment in Germany









 





Feb 2009 just prior to stem cell transplant







July 2009 weight loss due to BOOP (un-diagnosed)









May 2010 recovering from BOOP steroid induced weight gain.









 











 





































Back into life... Ooh and motorsport too :)

You really don't realise how much you are affected by the stress of being told you may have only a short time to live until the person that told you that changes their mind and tells you that possibly everything is fine. It's like night and day. Every aspect of my life is changed by it. I can once again make plans and relax.

I'd even put off building the new garage to store the race car because of fears that I might not be around to have one to store. I'd carefully reduced the size of my stock orders from overseas because I didn't know if I'd be alive to sell the items if I got in too much stock.  The uncertainty taints every aspect of your life.

Anyway, I have decided that I'm well and that's that. The doctor may have said things could go either way, but to me I'm in remission and those couple of nodes that he was concerned about are just odd looking nodes. End of story.

So what have I changed since the last post ? Sarah and I are off on a few days holiday, our first in a long while. We are staying at a Lodge in Taranaki that offers accommodation in private chalets situated along the shores of Lake Rotorangi. Will be ultra relaxing!

The race car is back together and just needs to be sign written to be complete.
I raced it last weekend at Shelly Bay. I'd told Sarah that I was going to ease myself back into motorsport and take it easy as I haven't raced in nearly a year.
The road was in terrible shape, the worst I've seen it in the fifteen years since I first competed there. Loose gravel on the corners was making for a very scary course and three cars were completely written off as a result. Thankfully no one was seriously hurt. 

Here's video of the worst of the crashes. Victor Yuen, my co-driver from last year's Targa, spun out on the loose surface and careered off the road onto the rocks and into the sea upside down.




I took it easy for the practice and first timed runs. For the second run I used high boost and tried to come to grips with the road. Because of all the loose stones on the road a lot of people were taking a low racing line through some of the corners which resulted in the stones being swept up high onto the racing line that I would usually take. It was very scary to find myself committed at 160kph to a high racing line only to find it covered in gravel.. the resulting slides certainly made for a scary drive!

I managed to post a time that put me in front, however it was a full six seconds slower than I've done in the past. For my third run I took a passenger and that proved to be my downfall.
As I sat on the line I asked him how much he weighed, "just over 90kg" was his reply. "Hmm.. the last time I had a passenger that heavy I kept spinning out!" I told him.

The run was going well, I'd managed to find some good racing lines and grip didn't seem to be a problem. Then as I approached the Lighthouse at around 180kph I lost concentration, I braked too late and the added weight of the passenger had made slowing for the tight second gear corner all that much harder. The wheels locked, unlocked, locked again...  I turned in and hoped like hell we wouldn't go off the road and into the sea. The Evo spun 90 degrees to the road and slid around the corner in a wide drift (but was really just an out-of-control screw-up) before coming to a complete stop. Luckily unscathed.

We then drove to the finish line, the run wasted. I'd blown it by over-driving the car.

The end result was that I finished in second place behind Tony Burrows who had managed to better my second run time and not make any mistakes. I'll never know what my time would have been had I not spun-out, stopped and toured to the finish, but the total elapsed time was just 4 seconds off the winning time. Still.. not bad for a very Rusty-Racer.

Next event is Port Road on Oct 24th, then it's Admiral Road Hillclimb on November 7th.

Work has been busy as usual. Lots of little jobs and a couple of big ones..

This little Alfa GTV race car has been one of the more interesting jobs. I fabricated a new exhaust system, upgraded the fuel lines and installed a hydraulic hand-brake. Ultimately the car is being prepared for Road, Race and Targa use.

..and finally no blog post would be complete without a mention of the dreaded Prednisone steroids. I'm weening off them slowly, now down to 18mg a day. Some of the side effects are diminishing, such as the back pain which is now of no real concern. ..Just another 18 months and I'll be free of the dreaded drug!!   ;)

Results ...

Well after a long three month wait on a knife edge the scan results are finally in.
There's been no change in the 15mm lymph node in my pelvis and some of the other smaller nodes that showed on the previous scan are no longer visible. One in particular near my heart has disappeared.

Compared to his tone of three months ago Dr D'Souza was a lot more positive, I would say cautiously optimistic. He said there's around a 50% chance that the treatment has been successful, which is a lot better than last visit when he was certain I had relapsed and that there were no longer any curative treatment options for me.

This time round there seems to be doors opening up for me in light of the fact that my lungs have improved back to normal and I'm weening off the prednisone. The fact that the 15mm node in my pelvis would have had to have grown at a time when my prednisone dose was at it's highest, but now seems to be being kept in check is another good sign that it's probably not lymphoma.

So the bottom line is it's still a bit of a lottery, but there is no conclusive evidence of relapse.
I do have a problem with a severe back pain, but that may well be muscle weakness due to the steroids and the result being that it allows an old back injury to flare up as it's not being supported by the muscles anymore. The reason for concern by me was because I have always associated my back pain with active lymphoma.  I'm going to start doing exercises to strengthen them. This, if it is successful will give me both peace of mind and fix the pain.

OK.. time for a cautious celebration, Only no wine cause I'm on antibiotics for a chest infection! Bugger!

Big "Thank you" to all of you who have contacted me to wish me well. So pleased we got the result we had been hoping for.

Cheers!  ...Ron

Waiting, pain, mental health, God and Guns.

It's now just eight days to my next CT scan. Then a couple of weeks till I get the word on whether I've relapsed. Some days I am convinced I have, others I'm not so sure. I guess if I work on a totally logical level and remove the denial aspect, then I probably have. However it must be at a very low level because some of the little signs that point to relapse have been with me for over a year.

I think it's best to just live in ignorant bliss and get on with life. I got a big fright last week when I developed an excruciating pain in my lower back and left pelvic area after a glass of wine. A classic Lymphoma B-symptom. However I have had the back pain on and off in the past and can't 100% link it to HL and it could just as easily be steroid related as it seems to occur at a point when the steroid is at it's lowest level in my body, twelve hours after taking it.

However I've found that I am having a lot more episodes of the dreaded pulsing back pain these days. Sometimes reaching an 8 on the pain scale. So painful that you are unable to focus on anything but the pain and if it wasn't for the fact that it's a known thing.. you'd be tempted to call an ambulance. (On my pain scale 9 is akin to torture and 10 you pass out). Last Thursday night I took paracetamol, Ibuprofen and then Morphine before the pain faded over a period of three hours. I was unable to walk as each "pulse" completely removed muscle function from my legs. Not fun!

What I do now is take paracetamol as a prophylactic, in the morning and at night. If I time it right the pain never gets a chance to build and all is well. With each 1mg reduction in steroid dosage I can expect even more body aches and pain as my system goes into adrenal withdrawal.

I've finally gotten over the last of the dreaded cold that I had, it almost feels weird not to be coughing all the time. I've probably only had a couple of weeks since April last year where by I was not coughing constantly. I'm now at a point with my BOOP that I will be weening off the prednisone over the next 18 months or so. That's assuming I haven't relapsed of course.

I've had plenty of work lately, mainly suspension upgrades and wheel alignments. Today and tomorrow I've declared "Mental Health Days" and have booked no work. I'm thinking about making a low-key start on the Evo once I've posted this blog update. Maybe put some door panels on or something.. just enough to fire me up to do the bigger things later on. Perhaps once it's all back together I'll get excited about entering some events again.

Sarah and I finished work on the courtyard last weekend, it looks great! We have just a couple of metres of pathway to complete and the whole job will be done. We are so glad we broke the job down into bite sized sections. Looking at the job as a whole it was quite daunting.

Exciting things on the horizon.. Rally Wairarapa on Sept 10-12. This will be the sixth year we have "Swept" the rally and it's something we both look forward to! More so me than her she tells me. Probably because she does all the paperwork and I just drive flat out like a loony on the closed gravel roads :o) Here's a link back to my post of last year which describes what the job of the "Sweeper" is.

My brother Mark and I have gotten right into our shooting and have been buying all sorts of gizmos and addons for our rifles so we can more effectively shoot rabbits on a couple of local farms. I know not everyone likes the idea of killing small animals but they are a pest on farms and they eat almost as much grass as a sheep. We both find it a good way to get exercise and wind down.
We are having some new silencers custom made for our rifles to avoid scaring away the prey. The guy that makes them is a Reverend who is also a gun fanatic, an engineer and an amateur science nut. A strange mix of God, Guns, killing and creation.

OK.. off to see what I can get done on the race car...   :o)

UPDATE: Got a lot done on the Evo in just a short time: Door trims fitted, rear bumper mounts started, engine running. Engine will need to come out for a freshen up though. Tomorrow I'll do some more now that I'm motivated.