Part 2. May 24. Read Part 1 Below

Posted on May 24th, 2011 by Cam.
Categories: Let's talk.

I have written two entries today- one before the consult and one after.  If you are disciplined, have amazing self-control and can bear delaying the outcome of today’s consult, then I would suggest you read the previous entry below (Part 1) to get the background.

Go on.  Off you go.

Whenever I have a major procedure that involves pain or risk, or receive big news (usually unwelcomed news) I splurge on a Bacon Double Cheeseburger meal (minus tomato).  Today, after the hospital visit, I supersized the order, and swapped the coke for a chocolate thick shake.

Ash and I have been praying that the options for me would be made clear, and today we feel they have never been clearer.  I was going to chat to Dr Dejan about coming off the trial.  I was willing to stay on it for a few more cycles if it meant the trial would give valuable data for other people in the same situation.  But for me it is clear that the trial has not worked.  As I was  about to talk to Dr D about coming off, he told us that it was their opinion that I was receiving the placebo trial drug (still receiving the real Velcade though) and so they had taken me off the trial as it was clearly not working.

My counts now are expected to be through the roof based on the exponential trend over the last few tests.  I felt completely relieved when he said this.  I didn’t want any more chemo, and the decision today was made very easy.  Prayer answered.

Another treatment option was presented, involving Velcade and 3 other hardcore chemo drugs.  It would involve another central line being put into my heart chamber via my neck again, 4-week cycles that we may have to repeat up to 3 or 4 times (therefore 3 or four months).  It would involve being an inpatient for significant amounts of time, becoming neutropenic and the side effects are significant.  I have already decided to not do this treatment, nor any other of the suggested ones that follow.  Dr D understood completely.

So now that leaves us in a place.  I haven’t been in this place before, but there is a sense of incredible relief for me.  I have had recent and significant miracles that have prepared me for hearing this news today, so we had encouragement and faith to operate from during the consult.  I still haven’t wept, which would be my usual response after such news.  In fact, quite the opposite – I have been excited all afternoon.  Ash and I spent the rest of the afternoon praying specifically for these next few months.  It is my expectation that the next two months especially will be glorious, whatever the outcome.

Ash and I have planned to be in the US from mid to late July, just after our wedding.  We are booked at a conference in Chicago in August, and we have various other plans that involve living rather than dying.  I have paid $70 for a ticket to the conference so I am not about to give that up, even though the exchange rate is in our favour, it is still $70 bucks.

My excitement is due to the fact that whatever happens, whatever the outcome, I am going to know soon.  We are trusting God with everything we have got, and when I feel my faith is lagging I am thankful for Ash and a host of others who are dripping with faith and encouragement that I can operate under.  After nearly 4 years of indescribable difficulty, an outcome is at hand.

We continue to pray furiously, passionately and with complete faith that the promises of God’s are good, that He is good, and that healing has been paid for by Christ at the cross.  The healings that we have witnessed and experienced in our own lives and what Jesus in his living, death and resurrection is enough.  I am secure in this now, regardless of outcome in my circumstance.

There is no losing option here.  Of this I am convinced and the truth of it manifests heavily in my spirit.  I am not feeling down.  I am not feeling defeated.  I am not feeling abandoned at this point at all.  On the contrary.

I feel like I am finally getting revelation of God’s love after recognising my own struggle in this area of accepting and recognising such love.  A glimpse is enough to bring about change.  This has been more difficult than I ever thought before, not because God’s love has not been there, but because of my own difficulty in accepting it.  This needs further explanation, but later.  For now, I am learning a lot, experiencing a lot, and experiencing peace at this time.

Between what I have seen in Ash’s life and the testimonies and teaching at our church, I have seen and heard the most amazing revelations of the transforming power of God I need for a time such as this.  I feel ready, excited, confident and peaceful about these next couple of months.  When it comes to what I believe about Jesus, I can never die a fool as He never lived as one.

My perceptions of who God is has almost done a complete shift recently, and it has still got a way to go – I still feel and live with perceptions that disfigure God, but thankfully these are being chipped away at.  I am dying to see God as He is, and now I know a powerful revelation is standing by.



Comment on May 25th, 2011.

correction: “you are living to see God as He is” and allowing others to see His reflection in you

Peter E Jones

Comment on May 27th, 2011.

Cam, not sure if you are reading your email, so I’ve plonked a copy here too!

That was a nice break out in the autumn sunshine in Kings Park and for Charlotte to meet up with Ash last Sunday.

Your dad tells me that you are coming off treatment, or at least the experimental trial.
That seems as if it is not hitting the spot.

What I was going to add, if your docs have not already suggested it, was to consider supporting treatments.
There are several simple ones that perhaps us olde folks should follow too!

Such as getting enough calcium in the diet to aid bone replacement.
Milk products seem a better source than simple tablets.
Brisk walking also seems to be important to make the bones stronger and also improve the immune system.

Also, especially in the winter months, to add in adequate vitamin D, this aids the calcium absorption too.

Lashings of Omega-3 (AKA fish oil) — I am taking two lots of 2X1,500mg tabs per day after realising that the Glucosamine was just going down the pan.
And that seems to be OK for joint pain as well as all the other good stuff it does to the brain.

Omega-6 are also needed, get that from un-roasted nuts, eg walnuts etc. and meats.

And some mixed berry slushies with yoghurt gives you a boost of anti-oxidants and calcium.

There are probably some other minerals and vitamins that can be added to the mix.
From the usual over-hyped suppliers BUT not Isagenix!!!!

Then there are more interventionist treatments to maintain bone strength.
In particular the use of bisphosphonate.

I was reading a couple of papers from the recent 3-6 May 2011 International Myeloma Workshop in Paris by Dr. Roodman.
In particular this summary:
“Consensus guidelines for the management of bone disease in multiple myeloma”

They are both available from their site as PDFs (the icon shows a Word doc):

As to pain management there are two main aspects:
1) the reality of physiological pain signals and
2) how the brain responds to (ie interprets) them.

You may like to watch the UK BBC Horizon documentary that explores this issue and reveals some surprising results.

One location for it is here:

Or you can search for “The Secret World of Pain”.

In one amazing experiment, using a functional MRI scanner, it showed that even with the top opiate infused people could still feel pain if they thought that the opiate had been stopped!

And of course, the other way round, no sensation of pain and no opiate in spite of the experimenter inflicting physical pain.

I wasn’t too sure why the young man had to cut off his arm when trapped in the basement.
Why did he not wait, you can survive quite a while especially if you have water.
And then how come that saw was to hand????
He has a verra scary voice too!

All the best, make sure Ash keeps up all the hugs etc, cannot just be meds, meds, meds . . .

- Peter Jones

PS, oh, what about an early-grey-nomad tour of Australia first before trying the US?
If I was younger I’d fancy the Whitsundays on a catamaran with a companion by my side and chilled pina colladas as the sun sets!


Comment on May 30th, 2011.

Thank you for showing us that God is bigger and greater than all that you have been through, and for your faith through the fire. All our lives have undergone change, challenge, joy and suffering to some extent over the last 4 years, is comparison relevant?
My thoughts and prayers have been with you regularly/occasionally due to your blog. Thank you for letting me walk beside you. Blessings from the other side of the continent, The Canberra-Perth Alliance again.

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