Wedding :) ...Relapsed BOOP ?

The weather turned on a fantastic day for our wedding on Saturday 18th Dec.
The morning had started with drizzle and overcast, but by midday the sun was out and stayed that way all day until the rain set in at the end of the evening once people were leaving.

We had a catered "After Party" for 65 friends and family, which went off really well.
Sarah and I found it hard to spread ourselves around the many guests and a few we only saw as they were leaving. Those I have spoken to since have all said they had a great time so I'm guessing we didn't offend anyone by not getting to talk with them all. :)

A couple of pics from the day below..   Others here... Picasa web album

 

Healthwise I'm in a real quandary at the moment. I started running a constant low grade fever a week ago and developed an asthmatic cough. In light of the reduced lung function from my last test it was a reasonable assumption that my BOOP/COP had relapsed. I tripled my dose of prednisone and the fever stopped the next day.
Interestingly the asthmatic cough is made worse by taking Seratide which is a combination of a steroid preventative and a bronchodilator designed to treat asthma. I've switched over to Flixotide which has just the steroid preventer and the cough is much better.

I have an appointment with the respiratory doctor, and lung function tests on Wednesday 5th Jan (early next week) so I'll find out then if it's a relapse of the BOOP lung inflammation. If it is, it looks like I'll be on the dreaded prednisone for a lot longer, if not forever.  sigh.

On top of the possible BOOP relapse I've developed the most annoying skin itch (pruritus). It's been getting slowly worse over the last six months until now it's almost unbearable. It's worse at night as the steroids wear off. I used to have a similar itch when my Hodgkins Lymphoma was active. So that's got me worried too. There are no other Hodgkins symptoms, however prednisone could well be masking them. I'm not scheduled to see the haematologist until the middle of march, and I've seen no sign of an appointment for the CT scan, despite emailing the haematologist and reminding him.

So it's somewhat frustrating to start 2011 with possible relapses of both BOOP and Lymphoma hanging over my head. I'll post an update next week after I've had the lung function tests.

Despite everything I'm determined that 2011 will be another awesome year like 2010. After-all I'm still here 6 years after starting treatment, and I'm still managing to live a full and active life. That's gotta be a good thing!

Happy New Year and all the best for 2011  !!    ...Ron

Just a week to go..

It's now only seven days until the wedding. Most people would expect Sarah and I to be getting fairly excited about now.. or anxious, but after being together for such a long time, we aren't expecting a huge change in our actual relationship, just it's status.

We are looking forward to the big day, don't get me wrong. But here we are on a hot Sunday afternoon just seven days out and we both seem more concerned about keeping cool and having a lazy day in the shade than we are concerned about next Saturday's big event. Maybe once things start to wind up later in the week the nerves will kick in :)

It's been a month since I last posted, sorry about that. There's been a lot of new work done around the house. The biggest of which was the construction of a retaining wall and fence to support the steep edge of the driveway and give some measure of safety to people walking along the drive.  Previously anyone that tripped off the edge would have a steep 45 degree tumble of about 50 metres before they stopped.

Here's some before and after pics...

Most of the work was done by a friend of mine who volunteered his time, his digger and his truck for a fraction of what it would have cost to do normally. Thanks JP !!

Healthwise I'm feeling pretty good. Just one worrying symptom that I would like to have an answer for. I have an annoying skin itch, mainly at night. This can be a "B" symptom of Hodgkins Lymphoma. Or it could just be side effect of prednisone (although it's rare). I've been waiting several months now for another CT scan to be performed. So far there's no sign of it being scheduled any time soon. I may just pay to have one done privately so I can put my fears to rest.

I had another lung function test last week and the doctor was concerned that the results were worse than previous (which were really good). I found that a little odd as my breathing these days is excellant when compared to what it was last year. I have no cough or difficulty breathing. However I had stopped taking my steroid inhaler because of the improvement and that may explain the drop in the readings.
My respiratory doctor had not prescribed the inhaler, it was something I'd asked my GP to prescribe last year. So it never occurred to me that it may have been responsible for a large degree of the overall improvement in my lung function. I'm back on it again now. :)

I've stopped reducing my prednisone dosage too. I've leveled it out at 16mg a day and will stick with that until my lung functions have stabilised over several months of testing.

There's nothing happening on the motorsport front. Port road sprint kicks off the 2011 year for me and that's not till late January. I've set myself a goal of entering the Dunlop Targa in either 2011 or 2012 depending on finances. I feel I need to give it another crack with good health and taking in what we learned from last time. When you consider that I was able to run in the top five on several stages, and winning one, even with the car badly damaged, running on low boost (low power) and with me incredibly ill with pneumonia. You can see why I feel I need to give it another go! 

Lots of interesting projects coming through the workshop.. A Galant VR4 RS for exhaust and intercooler work. The owner was so impressed (his grin was a mile wide) with the work I've done so far that he wants me to complete the restoration of the whole car after New Year.
I have an Evo 4 in for the installation of a replacement Evo5 engine, plus a number of other jobs waiting in the wings.. Doesn't look like I'll be having a very long break over the Christmas period!

Have a great Christmas and all the best for 2011 !!   ..Ron

Duncan McKenzie sealed sprint series in the bag!

I'd pretty much written off any chance of reclaiming the Duncan McKenzie trophy this year as I had missed two of the seven rounds due to the Evo being in the panel shop. However as luck would have it my competition also missed a round or two and also fell outside the points table on a couple of events.

The end result is that after spinning and coming second at Shelly Bay, and then winning at both Port road sprint last month and the Admiral road Hillclimb last weekend, I have now clinched the series for the fifth time, I believe to this be the first time in the fifty or so years the series has been running.
I'm very proud of this achievement and the fact that I'm still able to post very fast times despite the passing of time and a pretty worn out body.  ;)

Here's a link to the Admiral road run down from Motorsport Central .
..and here's the Port road article..

Below is video footage of one of my runs at Admiral road. Pretty darn quick if you ask me!

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.