The Walk Beside

Christmas 2009

Posted on December 26th, 2009 by Cam.
Categories: Let's talk.

Christmas began with a banquet on Christmas eve second only to the second coming banquet thanks to Rach.  It truly was a taste of heaven, with a hint of lime.  Christmas breakfast was overseen and executed by myself, and when I say executed, it very nearly was.  Coconut and banana pancakes nearly ended up in the compost due to a semantic error (confusing the words ‘egg yolk’ and ‘egg white’).  Nothing liquid nails couldn’t fix.  Sleep, then lunch, then beach, then dinner, then catching up with dear Albany friends.  A perfect day, considering the year and circumstances.

I gave everyone in the family trees this year.  Family are all moving into new houses soon so I am looking to give them a gift that lasts a lifetime or more, or just creates a root problem for the next generation.  Whatever, they will either go to the houses or go to the family farm in York to create a grove.  I have also started some recordings, but due to unforeseen chemo overdoses and bad days, I only got one song out of five half finished.  So a bit of work to go.

I received a cow amongst other things.  The cow is being given to a developing country which is just as well as I love beef more than I love farming.  It is safer wherever else it ends up.  In the absence of the official card arriving stating how the cow will be useful, Dad drew his own card up.  He is the first to point out that his artistic ability is lacking but I thought the contrary today.  The cow was incredibly lifelike.  And it is so hard to find cows with three testicles these days to do still life.  I am proud he was able to capture the detail, it being a heifer and all.

Planning the year and living details is the main thing on the agenda over these weeks, hopefully before new year’s.

Christmas is a benchmark to get through these days, and it is the unspoken concern whether this will be the last one for so many people.  My thoughts today have been with families who are having their first Christmas without a loved one, especially the family of Mark who passed away in Townsville a couple of weeks ago.  God bring healing to me, to Steve, to Tim, to Anne, to Julianne, to Holly, to Judi, to Scott, to Tanya, to Norm, to Milanda, to Petrina, to so many others whose goal maybe to make it to the next Christmas with everything intact.

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Consult with Dr Brad

Posted on December 22nd, 2009 by Cam.
Categories: Let's talk.

I was a bit hesitant to find out my results today from a blood test I had last Friday.  The reason being I have felt more pains in my body lately, though I have been weaning myself off painkillers also.

I was ecstatic when Dr Brad showed me the omniscient computer screen, revealing that my para-protein counts were 0.5 counts higher than last month – up to 10.  This is still brilliant, and a damn-sight better than the 3000 experienced in earlier tests.

Not only this, but I have been accepted into a hospital-based trial that will keep me on this drug for another amount of time once my 11 cycles run out (which is actually pretty soon).  This news is fantastic, as I am doing very well on this drug, and the longer I can be on it, the longer I get to breath my allotment of oxygen on this earth.  I was absolutely so thankful for this news, and see it as a real gift – unexpected and right in time for Christmas.

The upside of being pretty bad with maths is that I miscalculated what my 11 cycle Velcade limit equated to.  I was under the impression that this worked out to be close to a year (thinking each cycle was a month originally) and if we stretched it out I would get about 18 months.  But, alas, 11 cycles gives only 33 weeks, of which I am about to use up my 10th, and we could possibly squeeze a year out of it with half doses.

The downside of being pretty bad with maths (or just blissfully ignorant) is that I just lost a significant block of time in my thinking of what life is left.  Still, in the light of the tragic news of my friend Steve who has recently been diagnosed, I have nothing to complain about at all.  Healing needs to happen for him before it happens for me.

At the end of my day, however, I have felt so thankful to God for everything I have.  My family and my incredible friends.  Everything I have I count a gift, apart from the dumb-ass plasma cells that can’t get their act together, but they at least have a little more time to sort themselves out.

I have the best doctor a guy could ask for in Dr Brad, and equally amazing nursing staff who have become life-long friends.  Although in this industry it is pretty easy to make life-long friends, these people would be the amazing long-life friends also, it is just that we need to squeeze that long life into a small chunk it seems.  Quality sometimes outweighs quantity.

I accidently took a double dose of chemo today.  That’s what happens when they leave me in charge of my own drugs.  So now I feel a little wrecked.  Must sleep.

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I don’t know what to say…

Posted on December 21st, 2009 by Cam.
Categories: Let's talk.

News tonight that a friend and well known pastor in Perth, Steve, is waiting on results confirming that he has Pancreatic cancer.

The prognosis is devastating, and he has a wife and two young children who have begun their journey that no one should go through.

After being forced to think about these matters for a couple of years now, I still don’t know what to say.

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Ups and Downs

Posted on December 20th, 2009 by Cam.
Categories: Let's talk.

The movement between the ups and downs in my mood and ability to handle things at the moment is a torment.

The night before last, Thursday night, I wrote an entry.  I held back pushing the ‘publish’ button as I wasn’t sure if it needed to go public, or whether it remains private.  There are still many things that are too raw at the moment.  This is it though:

Overwhelming

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Can’t beat it.

Posted on December 15th, 2009 by Cam.
Categories: Let's talk.

How good it is to have Angus take to the drums.  He loves them and I love him.

If I could come back again, I think I would be happiest just playing the drums.  Before I knew what a drum kit looked like, I was hiding ice-cream containers under my bed, along with a selection of knitting needles and textas.  When the concert in my head started, I would set up the kit and play along to tapes.  My drumming improved with practice but, due to lost and damaged drumsticks, mum never got around to finishing any scarves or sweaters.

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The Allogeneic Stem-Cell Transplant Chat

Posted on December 14th, 2009 by Cam.
Categories: Let's talk.

Today I had a meeting with the head of Haematology at Royal Perth Hospital, Dr Julian.  Dr Brad sent me to him to talk more about the likelihood of another stem-cell transplant as a way of putting me into remission.  The transplant we talked about was one that would involve someone else’s stem cells.  Both Rachel and Carmel have been tested and they are not a match, so the donor would be unrelated (Matched Unrelated Donor – MUD).

I have met with Dr Julian before, and after 40 minutes of him telling me how risky the process was, I decided I would not go ahead with it.  Today really didn’t change things.

Carms came with me as one who would provide an objective ear and medical background.  I went as one who has a subjective predisposition and medically battered.  We both left feeling the same.  In the past, I have been wary that I may be refusing medical treatment based on my emotions on any given day.  There comes a time also when the mind gets tired of treatment before the body does, and my mind has been there too many times.

In saying this, I am not discounting the possibility that a stem cell transplant from someone else may not be on the cards in the future, but I would have to be completely on my last legs and sporting a ‘whatever!’ attitude.

The risk is that the new stem cells would essentially give me someone else’s immune system.  This is a good thing in regards to fighting off the myeloma cells, but it could also attack my own body (Graft Versus Host Disease GVHD).  This often results in poor quality of life and risky complications.

On the positive side, there may be other drug options that are available when this Velcade becomes less effective or available.  I left feeling fine about the options given, apart from none of the options involving cure.  I have not even contemplated the possibility that someone may come up with a cure for this one during my lifetime.

I scratched myself today and started to bleed.  It was the first time I looked at my blood with contempt and thought, “This is all your fault”.

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A Doozie

Posted on December 7th, 2009 by Cam.
Categories: Let's talk.

In either my teaching or running camp stuff, I used to love posing questions to kids and adults that were quite challenging on ethical, personal or social fronts. An example would be, if you had to choose between being blind, deaf, or unable to speak, what would you do?

I would usually explain to the group first that I wanted an answer in the first 10 seconds – their initial response. I would then give them a time to think about it more deeply (once I had comforted and assured the younger students I wasn’t going to put them through any body altering procedure). The processing of such questions I found fascinating. Now, I am not such a fan. This one is a doozie.

The last few months, as I have mentioned, have been incredibly uncertain. The prognosis has been probably the poorest in the time I have been sick as the cancer went out of control exceptionally fast. The good news I got a month or so ago just did so much to turn my thinking around – I can’t explain what a difference it made to my mood. I can’t remember getting such good news the entire time of being sick, apart from when they told me I would be unconscious before they put my urinary catheter in. In that instant, I didn’t want to know the details, who did it, or what comments were made. I just silently rejoiced.

The wonder drug that I am on now is brilliant – few side effects and very effective. Unfortunately it is also very expensive, and the government thankfully foots the bill, but only for about a year. We can possibly stretch this out to 18 months with something off the top shelf or by halving doses, but that is how we are looking at the moment. This is the good news.

The complicated decision is what treatment to do next. My biggest hope at this stage is what is called and allogeneic stem-cell transplant. This is where someone else gives stem cells, as opposed to the last one I had where I took my own. We have done the tissue typing, and my sisters are not a match.  In fact, Carms might be adopted (Sorry Carms, can’t remember if I mentioned this today when I popped around). But there are 6 excellent matches in Australia, and more worldwide, so I have the option.

The thing is, I only just scraped through my last transplant. Kidney failure, chest infection and hospital meatloaf all took their toll. Dr Brad has told me a number of times that the risk of me not making it through this allogeneic transplant is high. The Haematologist who conducts these transplants in Perth said the same. Both Doctors at the time (about 9 months ago) supported me in my decision when I told them I had chosen to not go ahead with this transplant.

If the transplant is a success, I still risk acquiring Graft Versus Host Disease (GVHD) where my immunity is compromised for the rest of my life, and my quality of life would be largely unknown. My body still hasn’t fully recovered from the last one. Quality of life means a great deal more to me now in terms of making these decisions, even though I realise I have still been far better off than so many others.

The bottom line of the up-side, is that this kind of stem cell transplant is my best shot at a longer remission. If it works, I will have a shot at a few years – five maybe, who knows. The thing is it could be five great years, or five really difficult years.

Then there is the issue of what I would be risking on the Roulette Wheel, or maybe ‘Craps’ would be a more appropriate association. In order to do the stem cell transplant at all, I would need to be in the best condition I can be. I would need to be well, fit and mentally strong. That time is coming up soon. My window period is not far off, so I am going to be considering this around about March next year.

As it stands at this point, I will be risking possibly a year of good quality of living whilst on Velcade (that is if it remains effective for me) to take on this procedure where the mortality risk for me is very high, to possibly get some more years that might or might not be worth getting out of bed for, if even that is an option.

I have decided to not think about it for this month, except to write this entry down, except to explain it to family and friends, except to consider it in the privacy of my own thoughts, except in the waking moments and the ones where I get to shut my eyes.

I am honestly not as worried as I should be, and that is the Peace that cannot be understood. I know that I may get worried in the future, and I am not pretending to be on top of this at all. It is just that I still feel upheld. In no way, does this make it easy.

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