Oh Baby!

Posted on October 30th, 2007 by Cam.
Categories: Let's talk.

No, not ours, but I am going to be an Uncle! Sister Rach and BrotherInLaw Mike are expecting in May 08. Nice work.

ultrasound14weeks312.jpg

6 comments.

When Death Comes Knocking

Posted on October 26th, 2007 by Cam.
Categories: Let's talk.

Don’t misunderstand this post, I am not trying to be pessimistic. There are, however, a few things in reality that happen when you get news of a poor prognosis. For some, death doesn’t bother knocking, it just barges in the door unexpected and unwelcome. For others, something like a cancer diagnosis can become like a knocking on the door. You get the warning, but the guest is still unwelcome. Death is the kind of guest that if you see it coming down the driveway, you lock the door and hide behind the couch, hoping it will think you are not home. At this stage, I feel like I am continuing on with my day, not hiding behind the couch, just walking around the house with music playing on the stereo. If I need to go out, I am using the front door, kindly excusing myself as I walk past the unwelcome guest. When the sound of the knock first came though, there were a few thoughts that came into my mind.

One of the first things that I started to think about, funnily enough, or not funnily enough, was considering who would be my pall bearers. I think this is because I feel surrounded by an incredible brotherhood that have looked after me as their own flesh and blood. This bond is strong, so I am not surprised that it was one of my first thoughts. Supported in life, supported in death.

The knock for me heightened my awareness of grief. It is ironic that one is not able to fully mourn their own death. Once you are dead, your ability to mourn has been taken away. This is not to say that grief does not take place now though, and for various reasons. The first of which would be through empathising with my wife, family and friends at their loss. I cried many times thinking of their grief if things didn’t work out for me. It crushes me thinking of the grief that they would go through, and although I don’t dwell on it, I would be lying if I said that it was not a real part of my thinking.

The knock also brought on a grief of another kind. At the time of diagnosis, I had already experienced loss. I had lost my mobility, my independence in getting from place to place, my pain free body and a relatively carefree approach to my future. After my original diagnosis, we were looking at a week before I would start chemotherapy. I thought during that week, “This could be the last week that I have my mobility, ever.” You would think that I would be out and about, making the most of the ability that I had. I should have been walking through parks, smelling roses, running in slow motion along the beach. But I didn’t. Instead, I found myself watching crud daytime TV shows, pottering around the house, and doing everything but ‘seizing the day’. This is not everyone’s experience, but it was mine. It may be understandable considering the shock and grief, but it was not the way I would have expected to respond.

The knock made me more aware of others that had been in this same situation. Knowing that I was still at the beginning of this journey, I thought more of others who had dealt with what we were now facing and how they appeared so composed and real in the light of dealing with issues that can seem quite surreal. I have to say, there is a difference between filling in a will when you are healthy to when you fill in one after a poor prognosis.

So at the moment, I think that death knocking has subsided for a time. You may be thinking that talking about death in this way has a pessimistic outlook. If it is, excuse me for not joining you in this. I have every reason to be optimistic, but every reason to be realistic also. There is a fine line between denial and being optimistic. I could state that I am not going to die and some may say I am being optimistic. But I am not going to walk around declaring that death is not a possibility. Death is, in fact, guaranteed for all of us at some point on our life continuum (usually towards the end). I believe, however, that I won’t be beaten by death as this is a promise my creator has made. This is not to be confused with the possibility that I may be taken “before my time”. Optimism can be applied to God’s promise that death has been beaten, that we all may live long and happy lives, that poverty will vanish, and that I will be able to buy a Ferrari. However, only one of these is guaranteed.

My preparation for death does not mean I am opening the door and inviting death to take a seat. I am hoping for a long life and I am looking forward to everything I was looking forward to before, only now it is with more intensity. When I hear the knocking again, I am not expecting to hide behind the couch. But I am not promising that I won’t be turning the stereo up a tad.

13 comments.

Turned Tables

Posted on October 23rd, 2007 by Cam.
Categories: Let's talk.

One of the absolute highlights for me in these last few weeks has been a visit from three of my ex-students. I had taught them for 2-3 years from Year 7 and 8. Now, they are driving or going for their license, finishing high school or pursuing further education.
Their visit just really impressed Libs and I. They had a real ownership with their beliefs and faith indicating they are really thinking about things. They inspired us and left us encouraged. It is a humbling experience when you spend a lot of time with kids, trying to encourage them and inspire them in their development, and years later they return it in such a real way. I end up being the one that benefits from their generosity, their convictions and their encouragement. This is in spite of me being sure I would have given them all detentions at least once during their lifetime. Oh well…

5 comments.

Where it all stems from.

Posted on October 18th, 2007 by Cam.
Categories: Let's talk.

We had a meeting with the Haematologist this Monday, I forgot to mention. It seems my case is very extraordinary, and therefore quite difficult to work out what is going on. He said that nothing has really been usual in my case and therefore they are not going to be taking any chances with what to expect. It seems that my journey has been quite uncharacteristic of this disease from the start, including that it is presenting in a 33 year old.

We have decided at this stage to harvest my stem cells as a way of ‘hoping for the best, but preparing for the worst’. There is a timing issue in that if they need to radiate my pelvis in the future, it could delay the treatment process. I was happy to hear that they are planning to extract my stem cells with a process that doesn’t involve chemotherapy. It will involve daily injections for about 5 – 10 days until enough stem cells jump ship from my bones to my blood stream. Then, the stem cells are captured with a particular machine that I call ‘The Stem Cell Catcher Machine’ (I know, brilliant). Then the little suckers are put on on the shelf until I need them, if I need them. If they end up not using them for infusions, I will ask if I can get my stem cells back so that I dabble in a bit of cloning.

Libs and I are taking the next four weeks off, so two weeks are hanging around here for a few more appointments, and then two to go AWOL. We just need to go somewhere where I don’t have to look at another blood collection trolley, x-ray machine, biopsy needle or sterile sample bottle for a while.

Aside from that, for those that are not aware, there are some really valuable comments that people are posting where they are sharing their own journeys. I have found these really insightful and would encourage people to keep their eyes on the comment sections (by clicking on the word ‘Comments’ at the bottom of each post) or to post your own experiences. You may find that sharing your walk with others is the cheapest therapy ever.

13 comments.

Unremarkable, my butt!

Posted on October 16th, 2007 by Cam.
Categories: Let's talk.

I think I have turned a corner. The day we received the report claiming my pelvis was unremarkable (no evidence of cancer), was the same day I was instructed to come off the crutches and walking frame. So I have been off them since Thursday.
This means I am now walking unassisted, finished radiotherapy, I don’t have cancer in my pelvis, I am pretty much over my chest infection and I am feeling relatively good. The biggest pain I have has been dealing with a sore rib that occurred during a coughing fit with the chest infection, but even that has been feeling better in the last day or so.

The good news for us is slowly sinking in. It seems to take a few days for us to adjust from a negative prognosis to hearing good news. It is tainted I suppose by the fact we have been through this a couple of times before, and there is great difficulty in knowing if the cancer is indeed contained locally in my sternum. For now, it has been enough to get us thinking about being able to take a break when I am physically able.

What is amazing is how I have been given this diagnosis in the light of what seemed to be a certainty. All the doctors were gearing me up for chemotherapy because the cancer seemed to be present in my pelvis. Everyone was pretty sure of this. I was put on a special diet while in hospital to fatten me up for chemo, we were sent to the fertility clinic to prepare for infertility due to my nurries being fried through chemo, I was even measured up based on where the cancer was in my pelvis to have it radiated before chemo- I have the tattoo to prove it! Elizabeth and I spent 45 minutes looking at the X-rays, bone scans and CT scans with the Oncologist looking at the images that indicated cancer in the pelvis. Everything was pointing toward Multiple Myeloma due to my pelvis. Now, it ain’t there.

What I can say is this: For those of you that are pretty keen on putting all this down to coincidence, then add it to the ever-growing list. For those that have been praying, I am very thankful to you all. I have never doubted the reality of prayer. It is the way that God answers or chooses to respond that sometimes leaves me wondering. While I am sitting here, contemplating going on holidays, someone else is waiting for a life-saving kidney, or is not winning the battle with cancer, or is grieving the loss of a child. This does not take away from my gratefulness to God, but it certainly makes me wonder what he is up to.

A mentor friend of mine was over the other day and we were chatting about this. He has decided that he is not going spend any more time trying to justify God’s actions. We have both grown up hearing people whipping out comments like ‘It is part of God’s greater plan’, or ‘Things will work out in the end for the greater good’, or how about ‘We may not understand why God has allowed this to happen, but we will see that it will work out for the best’. I believe this has the potential to be quite offensive to people that have lost loved ones tragically, or are going through sickness, or are going through some major difficulties where it seems God has left the building. When my friend is expected to explain why God has done this or that, or allowed suffering in situations, his response may be as simple and as honest as, ‘I don’t know’. No justification, no explanation, no clichés. How refreshing.

There are many stories of God healing miraculously, and rightly so – God does it often. There are many times though when tragic things happen and God didn’t come to the rescue as we wanted him to. We don’t often hear these examples given when people try to convey the character of God. Sometimes, if this subject comes up, the natural reaction is to try to justify why God may have responded in a way that didn’t bring us joy. I believe that we may be missing out on understanding a significant aspect of God’s nature when we decide to not process the tragic events that happen in our lives in favour of thinking up excuses for God’s apparent absence.

I know, however, that God never leaves the building. When we try to justify God’s actions or inaction, I think we are in dreadful danger of denying a greater understanding of God’s character. The more we apply our human thinking to explaining the reasons why God did this or didn’t do that, the closer we are to turning a sovereign Creator into the bloke next door.

20 comments.

And the winner is…

Posted on October 11th, 2007 by Cam.
Categories: Let's talk.

So I had an MRI and CT scan yesterday on my pelvis to confirm the location and presence of the plasmacytoma that has been heavily suspected. Elizabeth got back about 15 minutes ago with the films and the radiology report. It read:

“There is no plasmacytoma or focal bone lesion within the pelvis. No Evidence of left sacral plasmacytoma. The pelvic contents are unremarkable.”

Libs and I are again in a melancholic shock. Don’t know what to think, don’t know what to do. Can’t afford to fully participate emotionally on a roller-coaster ride that seems to keep on going. I think we will spend at least today processing this and talk more later.

17 comments.

Getting closer…

Posted on October 9th, 2007 by Cam.
Categories: Let's talk.

Most of us are not surprised that there are no definite answers today. We had a great chat with the Oncologist this morning. She spent a lot of time with us talking through the results of all the scans and tests that have been done. The bottom line is that things are still inconclusive. We saw the nuclear scan that shows up the hot-spots where high metabolic activity is taking place. This can often highlight areas of old trauma or cancer. There are definitely suspicious patches on my pelvis and a few on my ribs. So we go on to the next step.
The next step is to have a specific MRI and CT scan of my pelvis. This should give us the answers that we need in order for the diagnosis to be defined. The downside is that we are still having to wait. The upside is that it buys us a few weeks before we venture down the chemo road. We were able to call a friend who works in radiology who kindly organised a MRI and CT scan for tomorrow. If we had of gone through the public system the expected wait would be about 8 weeks.
Libs and I were talking tonight about how good it will be for me to feel well again. Feeling ‘well’ seems so foreign to me now. I have forgotten what it feels like to ride a bike, go for a run, etc. At this stage, I am looking forward to losing the walking frame and crutches. I would also love to lose the headache, radiotherapy rash on my chest and chest infection.
What I have lost, however, is my chest hair in a patch over my sternum. This would be good to get back, as my bling looks so much better with a fury backdrop.

2 comments.

A defining week, hopefully.

Posted on October 8th, 2007 by Cam.
Categories: Let's talk.

This week is a big week for us. The specialists were meeting today to work out more of a definite diagnosis and treatment plan for me. It is a tricky situation, and has required patience to wait for answers. There is a big difference between having a Plasmacytoma and having Multiple Myeloma as far as treatment and prognosis is concerned. We have been prepared as much as possible for the worst, but it doesn’t make the wait any easier. We should find out tomorrow.
We feel like we are on standby for a flight we don’t want to catch, but know it is the only way to reach the destination. It is just that the flight is so risky, the airline food sucks and the forecast is for turbulence the whole trip. Whatever the case, our bags are packed and there have been many others who have caught this flight and made the trip ok.
Both Eilzabeth and I have been exhausted this last week. Our usual routine is to do something for about an hour a day (usually this is the radiotherapy outing) and then crash for about 3 hours and sleep. I think the emotional aspect of what we are expecting and what we have been through is taking its toll on our bodies. Elizabeth’s work has been extremely kind to us and really gone out of their way to make things great for us. It has made a huge difference in being able to get through these weeks and we are incredibly thankful to everyone there for the way they have cared for us.

2 comments.

A few of the tests

Posted on October 8th, 2007 by Cam.
Categories: Let's talk.

These are a few of the tests that I had while I was in hospital for those that are interested in the medical side of things.

Blood Tests
I have lost count of how many blood tests I have had, and I know there will be many more to come. It will now be a regular part of my life. Darnit.

CT Scan
This gave an incredibly detailed image of my hip that could be spun around and viewed from numerous angles. Very impressive to be able to see my hip bone. I felt like I was at the butchers.

Full Body Scan
This is where they took X-Rays of my whole body. It took a while but the staff at the hospital were excellent, making sure they got the best shots while treating me with the utmost care. They are mainly concerned with the long bones and the larger bones where the cancer is usually found. They took special X-rays of my spine/neck as the Oncologist has been concerned about the lack of movement in my neck.

Pelvis Biopsy
Yes folks, this is the same kind of biopsy I had at Fremantle Hospital (refer to video) at the beginning of this saga. This time was a bit different in that it was done while I was fully awake. Not only that, but I was unaware that the biopsy was going to take place until the Registrar came in with the toolbox. They completed the procedure right there in my hospital bed. Makes my last biopsy seem like overkill.
They gave me a local anaesthetic in my rump and then proceeded to core into my pelvis. When they extract marrow from the bone, there is a strange sensation as the pressure inside your bone is reduced quite suddenly. Needless to say the procedure was quite tiring and I was glad to get it over with.

Nuclear Scan
This was fascinating. I was injected with a radioactive solution into my arm while under a radiosensitive scanner. The solution emits radioactivity as it streams through my body and then shows up on a monitor so you can see it spread.
I lay down on a platform that had a screen above and a screen below. Both take images of the radioactive emissions coming from my body. When they first inject the solution, you can see the radioactivity stream through my body as it goes through the bloodstream. The radioactivity shows up as random dots that make up a fuzzy image. The initial session ensures that the solution is spreading through the body as it is meant to.
I was to come back two hours later once the radioactive solution has ‘settled’ in my bones. So that afternoon, I headed back for stage two of the scan. I lay on a different machine and it scanned my whole body in sections. Then they took a rotational scan of my pelvis. I was watching the image on the screen as they did the rotational scan so I could see my bladder filling up with radioactive urine. Fascinating!
Once the scan was over, it was back to the ward for some rest. It is strange to think that you are emitting radioactivity from your body and it gets rid of it through your urine, but the upside was that I didn’t have to turn a light on when I went to take a leak.

1 comment.

In Brief

Posted on October 5th, 2007 by Cam.
Categories: Let's talk.

Getting better very slowly. I seem to go backwards somedays and today is one of those days. Woke up with the sweats early this morning and I have been tired all day. Had my last IV antibiotic this morning and will continue on tablets to finish a course. The Radiotherapy machine is being serviced Monday so I have a break. Then next week we find out treatment plans and a more definite diagnosis. Too tired to write much more.

4 comments.

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