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.

Hmm

Ever coughed so hard you broke a rib? I think I did last Saturday.
I believe I'd already cracked it the week before during a severe coughing fit and I'd been in a fair bit of discomfort since.
Saturday morning I was laying on my side when I coughed particularly hard. As I did something went "pop" in my right side and the pain was excruciating! I was unable to move from the couch all day. Any sort of movement and I was in agony.
However after only a couple of days the pain is now quite bearable and so I'm not sure I actually broke a rib.. maybe I just tore some cartilage. Would be most unusual for the pain to subside so quickly.

Last weekend my brother Mark and I went up to Waikanae to do some pest extermination for a woman who owns a farm in PekaPeka that is over-run with rabbits and Pukeko.
We obtained a permit from "Fish and Game" to shoot the Pukeko out of season as they were destroying the farmer's grain feed and causing a general nuisance. In one night they had pecked open the bags of over a thousand dollars worth of feed leaving it wet and unable to be stored.

The paddocks were over-run with the birds and I figured we would have no problem bringing the numbers down. However no matter how many shots I fired I just couldn't hit a single one.
After a couple of hours of traipsing through boggy paddocks and having frightened off all of the birds into the neighbours paddocks we gave up and went home feeling somewhat embarrassed at our poor shooting skills.

Today I set my rifle up in a jig and checked the sites over a distance of 50 meters. I fired a shot at a board that was 900mm high and 600mm wide and the bullet missed it completely! Somehow in the 12 months since I last sited in my rifle it must have been knocked out of alignment.
I tightened the scope, fired another round at the board and then adjusted the cross-hairs to align with the bullet hole. A rapid succession of shots all into the same spot confirmed that it's now correctly sited and I won't be firing two feet over their heads next time!

I went for walk to the top of the hill today. I wanted to test out my lungs now that my cough is gone.

It's a real grunt to the top but I managed to better my last time up and made it to the top gate in 33 minutes, returning in a total of 59 minutes. I'm fairly sure most people would struggle to to keep up, so I'm pretty happy about my over-all fitness considering what my body's been through in the last five years.

Oh and the view from the track is fantastic making the walk well worth the effort.

It's still another couple of weeks before my next CT scan and then two weeks after that before I find out if I have relapsed. In the meantime I live on tender-hooks.

I've still no major signs or B-symptoms. Fingers crossed the nodes have shrunk and I can start planning for the future again.

It's been a while..

It's been a while since I last posted, so I thought I'd better put fingers to keyboard.
Most of my time has been spent in the workshop and around the house and section.

I've had a huge amount of work come through the workshop in the last month. Everything from a Porsche 911 Carrera (964) for a Bilstein shock absorber upgrade to a Nissan "People Mover" Van for a suspension handling package, the latter I had to spec up myself as no one listed springs or shocks for it. There's also been the usual mix of Mustangs, Camaros and Corollas for wheel Alignments and tweaks.

Around the house.. Sarah and I have almost finished the courtyard. It's been a huge job, taking up the last four weekends and we still have about two days worth of paving to complete.
The Spa pool is now in place and running. Last night after spending all day laying pavers we got into the pool and soaked away the body aches while the wind and rain pelted down outside. The covered courtyard provides complete protection from the elements. Very cool!  :o)

I've done nothing on the Evo race car. I just can't seem to find the time with the current work load and jobs around the section. Having said that, I'm having a mental health day today because I over did things yesterday and am paying dearly for it. Last night I suffered a severe back-ache and today I am feeling quite "off" as well. One good thing is that the cold that I developed nearly four weeks ago seems to be waning and I'm coughing a lot less. (As is Sarah who caught it a week earlier than I did).
I've managed to re-crack the rib I injured in last year's Targa crash too... a side effect of the prednisone making my bones brittle combined with a couple of fairly decent coughs from this cold. It hurts a bit but not so much as it did last time.

I still have no idea whether I have relapsed or not. I finally got to read the report from the last CT scan and it does indeed look on paper like I have. However I'm still in better shape now than I was a year ago so it's anyone's guess. I have another CT scheduled for late this month and then two weeks after that I have the follow up with DR D'Souza to discuss the results. I live in hope that the nodes they are concerned about have either shrunk, disappeared or remained indolent.

I did have a night sweat last night, but I think that was because I took two paracetamol tablets for the back-ache. Paracetamol causes you to sweat which is how it breaks a fever if you have one.
I used to think that the pulsing lower back ache which can get up to about a "7" on the pain threshold was one of my "B' symptoms that indicated I had active Lymphoma. However I have had the pain when there was no decernable lymphoma on CT nearly a year ago. So perhaps it's not.
The mild skin itch I've also suffered from seems to come and go, so who knows.. I'll be glad to get the next CT over and done with so I will know either way.

I had a lung function test last week along with an appointment with the respiratory doctor. My lungs are now in the best shape they have been in since 2008 and that's with this darn cold which leaves me coughing and breathless. I put the improvement down to the little bit of exercise I have managed to get in. I can walk at a brisk pace to the top of the regional walking track above our land in 36 minutes. It's a steep up-hill grunt the whole way. It's amazing just how good I feel afterwards though. Exercise really does affect your whole sense of well-being.

I start weening off the prednisone next month. One milligram a month. It will take a year and a half to get back to zero and start feeling normal again, and that's assuming I haven't relapsed. It get's too scary and complicated to comprehend if I have, so I won't even go there!

Till next time....   Ron

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