I wrote off line a little during a few months ago. I thought I might paste it here to fill in some gaps.
12 September 2009
Things are pretty tricky now. To briefly fill in the large gap since not journaling, the radiation to the tumour in my head seemed to be effective, but not before the lesions had spread to other parts of my body.
I had a blood test just after radiation had finished and I emailed Dr Brad to find out results. He asked if I could call him as soon as possible. He asked if I could get the tests redone as he thought there must be some mistake, as the results were inconsistent with what I was presenting with. So I had them done again.
A week later I called up again to get the results and I spoke to Dr Dejan – Dr Brad’s registrar. I asked him what my protein counts were. To put things in perspective, my counts are usually considered ‘safe’ if they are around 15. Last year they got up to 20 and we started to get worried. Then when they spiked to 114 it was obvious that I needed a stem cell transplant. That bought the counts back down to about 15 again for some time. So you can imagine what went through my head when Dr Dejan told me my first result was 500 and the double check a week later was 770!
This beast within me is alive and kicking harder than ever before. Within a few days, I was no longer able to walk into work. As I lay on my bed tonight, I can feel exact locations of where the cancer is destroying my bones – my femurs, both sides of my pelvis, my left hip and in the middle of my spine are the most obvious. It is deteriorating rather rapidly.
14th September 2009
Just when I thought that nothing surprised me anymore, today happens.
I spent most of the day today in quite a sombre mood, but I got a lot done. I have not given up hope at all, but there are still practical sides to dying that benefit from preparation. Today, I worked on all the forms for claiming Total and Permanent Disability.
I started with Dr Simon, my GP. He is excellent – thorough and wise. Trevor at Hospital School Services then filled out the forms for my employer. Once again – excellent. Then I got a call from the hospital asking me to come down and sign a form for my medication. I had the forms for Dr Brad to fill in too, so I could drop those off at the same time.
When I got there, I was told that Brad wanted to see me. He showed me a graph of my Kappa light chain levels. It showed that my levels went to 1960! Yes, these are the results that Libs and I used to get worried if they got to the high teens. I was focussed on this part of the graph with my jaw hitting the floor, but meanwhile, Dr Brad was trying to get me to see the level that it was this last Saturday – it had dropped to 150 in less than 10 days! This is a very good sign. So much so that we may hold off on the Velcade for a time – save it for another rainy day. So this is where I was shocked. It didn’t take the pain from my hips, legs or spine, but it is a start.
Guennadi has been praying with me regularly for healing. We believe God is going to heal. Rochelle reminded me last night that there are many instances where God allows us to get to the absolute worst situation before changing our circumstances. I figure I am pretty close.
In hospital today I heard the familiar sound of an IV pump beeping. It is amazing how the sound so vividly brings back memories. The thought went through my head – “I never want to die with that sound in the background”.
16th September
Today I had a meeting with my Radio Oncologist, Dr Mandy. She has followed my case since the beginning, as my first treatment was radiotherapy really. She knows that my situation has been incredibly hard to read and that I have thrown curve balls from the get go. This time though, there was nothing she could say insofar as offering a positive position on my situation.
All the nurses who have looked after me are also aware of what my situation is medically. It is quite surreal actually. I am usually having quite normal conversations with most people, even though my prognosis is so poor from a medical perspective. We still have a laugh and a joke around. I am certainly not in denial, I understand fully the fragility of my life at this point, and how quickly it can come to an end. But God’s hand is firmly on this situation I believe.
Mary was the first person I met personally who had Multiple Myeloma. We met through Chemo Club. It was only a few months ago when she was limping like I am limping, her MM was out of control as mine was, but I doubt her protein levels were as off the graph as mine were. One day, she went into the hospital as she was rapidly deteriorating. Less than a day later she had died. If I were to give myself a realistic time frame, I would say I have between 2 days and 10 years, medically speaking – based on the worst-case scenario to the best. Quite a range.
1st October
I am recovering at Rach and Michael’s after spending a week in hospital with an infected gall-bladder. Not sure how it started, and I don’t really care. I went in to the workshop on a Monday to start the ordeal of packing it up. Guennadi and another friend, Don, came in to give me a hand. To be honest, I don’t know how I made it from the carpark to the shop, but when I got there, Guennadi took one look at me and told me there was no way I was going to do anything but head back home – I looked like a dead man walking, except I was in a chair and couldn’t really move. Don helped me back to my car. I drove home, but halfway there I started to vomit. Thankfully, I had left a rice-cooker in the back seat of the car which provided a perfect vomit bowl. Thankfully, I haven’t cooked rice for anyone since. Don got me home safely and I lay on a mattress on the floor for the day.
Not being able to walk properly or get up off the floor, I decided to email Dr Brad. My temperature at this stage was already 38.8C and it wasn’t getting any better. By the afternoon, I decided to head into Emergency Department as advised. I casually walked up to triage with my neutropaenic access card, my temp was taken and it was 39.9C and no more questions were asked. I jumped a queue of about 20 and was put on a bed and on treatment within the next 15 mins.
I didn’t eat for the entire week, for various reasons. Firstly, I didn’t feel like it. Then when I did, I wasn’t allowed to. Then, when I REALLY wanted to I got put on a fluid diet. I lost a lot of weight during the week.
It was a tough week mentally. Facing a risky situation again, having family and friends have to go through the emotional stress, listening to the sounds of the pumps and monitoring equipment that remind me of what sounds I will be listening to when I die (Mental note – must remember to bring iPod to deathbed.) It is just wearing me down. God has not healed me yet.
My future with Libs, the time I have left on this earth, the questions of what to do with this time, my crumbled hopes and aspirations, unresolved pain, my physical difficulties, my dying body, my waiting for life to get better, my waiting for whatever plan God has in store for me (supposedly) – they have all taken their toll, and I feel like I have missed the mark completely. What a waste of a life. I fear it is too late now. All evidence points toward the irredeemable aspect of this life. I am over waiting for things to happen, and now I feel powerless to do anything about it.
Yep, low point over the last week or so.
2nd October
If I look back on my life, the failures stand out like headlines, while the things I have managed to do slightly well disappear into the fine print.
Now, my practical decisions have a lot riding on them, not that they didn’t before, but time constraints and the ability to carry them out are limited due to many reasons. I am more confused than ever, wondering what to do with my time, my money, my living arrangements, my relationship, my goals, my health, my esteem, my identity if all these other things turn to shit. Oh what a fool I’ve been. Is there any chance of turning this around? It doesn’t seem to be possible, unless I get out of this town and start from scratch somewhere else. If anything, I want to be known as a husband primarily, that’s what I always wanted, and that has been the area that I have fallen down the most. All other stuff has collapsed in due course, and added to the shamozle.
