Busy around the house..

Last week I got Kurt in with his digger to remove a section of the bank at the rear of the house to make room for more parking and the planned storage garage. Sarah and I then spent most of last weekend compacting the gravel and leveling parts of the courtyard ready to start the paving around the spa pool.
Sarah shoveled and then barrowed over a tonne of gravel! How many 45 y/o women can lay claim to doing that?

The pictures below show just how much of an improvement in space we gained from just a couple of meters of soil being removed.

I've been living on a knife-edge since getting the word on my last CT scan from the Doctor.

However I don't seem to be exhibiting any major symptoms of relapse other than a mild skin itch.

All the other aches and pains I've had for over a year now and I had them at a time when I'd had several clear CT's. So I don't think they are relevant. Just wish I didn't have the odd prickly itch because then I'd be convinced that it's all a false alarm. (skin itch is a B symptom of Hodgkins Lymphoma, among other things)

I'm booked for another CT in late August, with a follow-up appointment in late September.

If the nodes in my pelvis are bigger I'm sure Dr D' Souza will be in touch. Hopefully he'll be in touch as soon as he see's the results good or bad! Would be nice to at least know where I stand.

Motorsport is pretty much on hold right now. I don't have any real desire to compete at this stage and I just don't seem to be able to find the time to work on the race-car and get it back together.

There is a hill-climb in early August that I originally thought was this July, I can't see me being at that however I will be ready for Shelly Bay on 26th September as it's one of my favorite events. Plus I'd love to lower my record winning time even further!  :o)  (At that point It will have been nearly a year since last driving the Evo in anger so I may be a bit rusty)

Tomorrow Sarah and I start work on laying the pavers in the courtyard.. Now that's a big job! I can feel a back ache coming on already!  ;o)

Later  ...Ron

The last thing I ever wanted to hear.

Well I had my CT scan last week and that was followed up by an appointment with Dr D'Souza on Thursday. I knew straight away there was a problem as he entered the room looking a little grim, unlike his usual smiling self.

He asked how I was, and I replied "excellent". He seemed surprised.
Apparently the CT revealed two slightly enlarged lymph nodes in my pelvic region. Not especially large at 8mm and 10mm, but large enough for the radiologist to make contact with him directly.

I said I wasn't too concerned just yet as I have not shown any signs of relapse, and other than the constant battle with prednisone side effects, I thought I was doing pretty good. I've had a couple of lymph nodes pop up in the past and subsequently fade away. He admitted that may well be the case this time too. However he seemed more negative than I'd have expected.

He suggested that in light of the fact that the nodes were too small to biopsy, that we wait another three months and perform another CT scan then. Based on that result he will either arrange for a biopsy to analise the tissue and confirm HL, or if they are smaller or gone, then ignore it.

Then came the really bad news..  the reason for the grim face. If I have relapsed he has absolutely no idea what he can do to treat me. Apparently because I'm on steroids long term and can only be weaned off over a reasonably long period of time, we can't use chemotherapy as my weakened immune system would mean I'd probably not survive any infection.

I can't be given an allogeneic stem cell transplant for the same reason and also the damaged area of my lungs would most likely be a site of disease re-activation in the future. Also if I developed BOOP/COP again we would not be able to treat it with steroids because that would switch off the lymphoma fighting aspect of a transplant (called graft vs lymphoma effect) where by the new immune system attacks the cancer. The result would also be fatal.

So here I am sitting in this small room, feeling great and he's telling me that the worlds about to end.
Oh.. but I might be OK..  just sit around stressing for the next three months, or until you feel really unwell and we shall take another look.

Needless to say my frame of mind has changed somewhat in the last few days. I'm unable to focus on much and all our plans for the future are in doubt, so it's hard to get excited about much.

What does make things even more stressful is that I have a very slight skin itch. It's nothing like the insane itch I get when my Hodgkins has definitely been active, so it may just be caused by the steroids or a high glucose level as a result of long term steroid use causing diabetes. It could also be the Hodgkins itch being suppressed by the prednisone too!  So although I feel good, every now and then I get a little pin-prick tickle that reminds me that I may not be.

Ever the optimist, I'm sure I'll get through all this again like I have in the past. Heck I'm still here five years after first getting the bad news. Though I must say that I'm playing with a much smaller pack of cards than ever before. It'll be a challenge!

...Ron

Just a quickie

It's been a hectic couple of weeks in my world.. well it seems that way. In reality it probably wasn't.
I've been weening myself down on the prednisone (yes.. my world does revolve around that drug!)
and I seem to fret about stuff that ultimately probably isn't even an issue.

However, I have been busy both with work and stuff around the house.
One area of concern has been security following the two thefts. I've installed an alarm system, upgraded the security camera system and am now working on the idea of an automatic gate that I shall connect to the the other two systems via a module that can text me whenever anything happens around the house. It's an idea I've come up with based on a unit Id seen that was designed to control dairy farm gates via mobile phone. It's amazing what you can come with at 2am on a sleepless night. One good side effect of the steroids I guess!

The Evo is now back home and looking good. I have to set about designing a quick-release type frame for the front bumper. The factory frame is bent beyond repair after the Targa crash and I've always had trouble getting the car on and off trailers with the front lip catching on the ground. The way around it will be to make a frame that attaches to the bumper skin and that can be removed by releasing just a couple of T-bolts.

Speaking of race cars.. It's become apparent that there's just not enough room in the workshop to store two race cars and have enough space to work on other projects. After consulting with Sarah (The accountant) she agreed that we really needed to build a separate storage garage for the two toys.
So starting next week I'll have Kurt, my former employee/mechanic turned earth-moving contractor, "fine tuning" an area of land at the rear of the house so a double garage can be constructed. That's going to keep me busy for a month or two for sure!

Yesterday I had a CT scan. I'd forgotten how much I have come to hate hospitals. There seems to be a limit as to how many medical procedures a person can have before they start to become abhorrent. I think I passed that point some time back. My veins are so damaged by chemo that the simple task of inserting a line is now a real mission. What was once just a case of choosing one of the veins on my arms that stood out like the lines on a road map, followed by quick sharp pin-prick. Is now 30 minutes of heat bags, tourniquets, searching and sometimes failures.

Yesterday I showed the nurse the most likely spot for success, she ignored my advice, failed on her choice and then succeeded with mine. Not surprisingly I have grown to hate needles. Today I have a blood test in preparation for tomorrows meeting with Dr D'Souza my haematologist. I doubt he will have had enough time to review yesterday's CT scan. So I'm not expecting to come away from the appointment with any news. However the scan is just to confirm continued remission, not because we suspect relapse.

Today is one of the first clear sunny winter days we have had in a long while. I think I should get out there and enjoy it while I go about the day's tasks..

Till next time ..Ron

This weather has been crazy! Nearly a month of rain so far with just a couple of days of sunshine.

Yesterday we had our first really cold day in the new house. The sleet built up around the windows giving that traditional frosted Christmas window look.

My health has been a bit weird lately. I increased my steroid dose just in case the chest infection/ asthma I had been suffering was a relapse of the COP (Cryptogenic Organising Pneumonia) and that made me feel really good. However I've been afflicted by a viral infection in my left arm.

I'd mentioned in a previous post that the haematology doctor wanted me to take an anti-viral drug daily on a permanent basis. I declined. He told me to be on the watch for the first sign of Shingles. A tingling of the skin in a band around my chest. If this happened I needed to go on the antiviral immediately.

A few weeks back I had a burning sensation in my left wrist, much like a chemical burn would feel. I figured I'd got petrol on my skin. Last week I started to experience numbness in the fingers of my left hand and just assumed it was a pinched nerve, something I've had on and off for years.

Then last weekend I developed pain in my left armpit and shooting pains in my fingers. Last night I took a look at my armpit and found it had a series of small red blisters. I also have a few welts on the palm of my left hand.

I know enough to realise that it can only be a viral infection, and that it's following the nerve endings down my arm. I see my GP tomorrow, but I know he's not going to be able to do anything as we missed the 72 hour window for the antiviral drugs to be of any use. It should clear up in 3-5 weeks all by itself.

There is a risk that it can spread to the lungs in someone with a compromised immune system such as myself, however I think this would have happened by now if it were going to. At least I'll know the symptoms for next time.

Who would have thought it would have appeared in just one arm?? At least it wasn't on my face, which is fairly common.

The EVO race car is once more a thing of beauty thanks to the team at D.E McMillan panel. They tell me that there is a slight difference in the colour of the doors to the body work as they were painted at different times. I couldn't see it myself, but they tell me they are going to remedy it before I pick the car up early next week.

From there I have to put all the interior back together along with quite a number of mechanical repairs.

I have a hillclimb event in early July that I'd like to enter, however the engine is supposed to be stripped and rebuilt as part of it's Post Targa service. I may put that off till after the event.

The car looks so good that I may be too scared to drive it hard just in case I scratch it again! .. I wouldn't want to break the hearts of the team of panel-beaters that fixed it!  ;o)

I've finished the storage room under the house and made myself a lot more space in the workshop. However with the Evo returning home that will leave me very little room, so Sarah and I are looking at building another garage to store the two race cars. I'm not sure who's the most spoilt.. me or the cars!  ;o)  We never really expected that I'd be putting so many customers cars through the workshop and it's just not really a good idea to be driving the Evo in and out everyday as I put cars on and off the hoist. The short running will destroy the engine and the race clutch in no time and they cost more than a garage to build.

The insurance company has paid out on both the stolen mountain bike and the race wheels. In fact they wanted to pay me too much for the race wheels and I had to decline their cheque. They somehow thought that $1500 was a fair price for the wheels. I pointed out that I could buy another set for half that. I don't think I should be making a profit from the theft, so have asked them to reduce the figure.

Having said that I've now spent quite a bit of it on a new security system. Monitored alarm and cameras. There should be enough left over to buy a new bike too. So maybe there is a silver lining to it all.

..Ron

I guess I'd better write something.. It's been a while.

I've been suffering a bit of a chesty cough for the last few weeks, so I've increased my daily prednisone dose up to 27.5 from 21 just in case it was the COP returning. I must say I do feel a lot better for it. No nightly back aches and pains. However that will probably change once my body gets used to the higher dose and starts complaining again. I threw in some antibiotics too and things seem to be improving.
The change from hot to cold as I move around the house and workshop can bring on a bit of a cough too but that's not entirely exclusive to me, I think most asthmatics would get that at this time of year.

My brother Mark and I have spent the last two Saturdays building a secure storage area under the house to keep all my long term car parts and spares stored away. It's all finished now, I just have to lug all my wheels and heavy boxes of car parts down under the house. Not a small job! However this will be great as it will open up a lot more space in the workshop.

What's more.. It will also allow me to lock stuff away securely as we have been the subject of two thefts in the last month or so. First time was set of spare wheels for the Evo from under the house and the second was my mountain bike from the covered courtyard. I'd originally written the wheels off and wasn't going to claim insurance on them. However once the bike was stolen and I priced replacing everything the bill was over $3500. So well worth claiming on. Sadly I need to spend a lot of that on a better security system.

The really annoying thing is I'm 99% sure I know who took the items, but without firm proof it's a waste of time pointing the finger. I just wish my security camera had been working on the day... that's the first thing I will be upgrading!!

...Ron