No news is… no news.

Posted on May 30th, 2011 by Cam.
Categories: Let's talk.

I received a call from the trial nurse today (she looks after the trial, she is not on probation) and they are going to do a trial closure for me in a couple of weeks. This just means I will be having my final lot of tests done to bring a conclusion to the trial results. They could just write down “bo-bow” (inflection and tone required to convey meaning – think incorrect answer sound effect on Wheel of Fortune). After all that explaining, it would probably be easier after all to pee in a bottle for a day and have multiple blood tests. Where was I…

Mixed reactions to the news on the weekend. Mostly because I explained to people that the Doctors had allowed me to come off chemo. Faces would light up, thinking that I was now in the clear. I still get excited by that news though, so I want others to see the positive side of it too. My body never has to have chemo again. I am thankful for the time it has bought me, but I am so glad it is not a part of my future. I am not sure where my levels are at the moment as we haven’t tested my paraproteins for a while. An estimation is that they are around 400-500 again. We are not fazed by the results though. If I were to go totally off what my body was telling me, I would say I am getting better, and that I should get my butt waxed. But sometimes we don’t always listen to what our bodies tell us.

I am off to Albany for a 20 year school reunion this weekend. Twenty freakin years. Seems like just yesterday that I was full of uncertainty, confusion, quite awkward and had skinny legs. Well, that was indeed yesterday, but 20 years ago I was a novice at it all. Now, I have just had time to perfect those attributes.

I have let the groups of people who I work for know that I will not be around to work next semester. Ash and I are planning to do a bit of travelling if all goes well. I booked us into a weekend in Chicago early August to go against what the cancer has planned for me. So many plans have been ruptured over these 4 years. So many plane tickets lost, rescheduled, so many plans scrapped at the last minute due to health issues. I have been moving in the opposite spirit to cancer every chance I have had over the four years, and so far it has just resulted in losing a whole lotta money. But this cancer has to crack soon. I will do everything I can to go against its intent to steal anything else. It has taken its pound of flesh. And the rest.

I have still not wept. This is strange. The only time I have wept recently was during prayer for something else. This is another story in itself, but for another time perhaps. I am still waiting to see if the answer to the praying is as significant now as it was significant then. This is a terrible thing to do – half explaining a scenario and then not ending it properly. Anyway, this is usually the time to crumble numerous times as I explain the latest to family and friends, but it hasn’t happened this way this time. I am not sure if this is a good thing or bad thing. Maybe a person just gets assigned a certain amount of tears for a lifetime and if you use yours up before your 80 years is up then you just have to resort to eyedrops. Not sure.

Physically, things are pretty good. I can feel pain in my left femur and a few left ribs. The PET scan showed lesions in both femurs, ribs, numerous bones in the shoulder areas, but none in the spine, well, no big ones at least. My head has been spinning for the last 4 days which I have not had before. On the positive side of things, I sometimes feel that my lesions are just getting better – that the healing has happened and the only activity going on at the moment is regeneration of bone and tissue, all with good cells.

I know that I say there is a lot going on that I am not writing up, but there is. I am going to start writing this stuff up soon, as I feel it is the season to do so. It is mainly about how I have seen God over the years, and how that has changed – especially over the last few years. It is nigh impossible to not have a God change on you over an extended time of difficulty. God does not change, we are told, so yay for the ability for our understanding of God to change. I have heard people say it doesn’t matter what each individual thinks about God, if they think about God at all. Hmmmm – very post modern – where its ok to perceive God how you like, make him or her fit how you want. This works for Mr Potatohead, but probably not the best way to treat the Creator of the world. Not sure if I will put it on this site or another one, but I have some time to write now, so I am doing my finger stretches now.

2 comments.

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.

3 comments.

Part 1, May 24.

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

Life is so busy – and I have very few commitments, so I don’t know how people with normal lives cope!

Today is hospital day and quite a significant one as I will be talking with Dr D (Dr Brad’s reg) about stopping treatment.  I have just had my bloods taken and I am not at all worried about the results.  I just have a peace about the future, no matter what is going on in my body.

Ash and I believe we are not fighting against the natural realm, so our trust is now solely in God.  There is good reason.

We have been encountering miracles along the way that have been encouraging to say the least.

This last weekend was a tiring one.  After a great family night on Saturday, my body was clearly not coping with the physically active weekend.  I could hardly walk due to hip pain and my back was also in severe pain.  I got home Saturday night and limped straight to bed.

A big part of this week has been that I have completely come off all painkillers.  I don’t even take panadol, and the fact that there is still oxycontin in the house and I am not taking any is a miracle in itself.  No longer am I physically addicted, but for the first time since November 2009 I am not mentally addicted.  My experience with painkiller addiction would need a decent chapter on its own.  I think some people’s nature and certain drugs are a bad combination.  For me they have been as much of a curse as they have been a help.  Nineteen months with hillbilly heroin ended last week. Check this link out. The whole doco can be seen on YouTube. Frightening.

Anyway, back to Saturday night pain…  I took nothing for the pain that night, partly because there are no painkillers at this stage that would put a dent in any of my pain other than stuff I don’t want to be on again.  Ash and I just prayed that it would be gone in the morning.

I woke up and was expecting the pain to be gone, but alas, I was still in agony with both leg and back pain – often needing to walk holding onto something.  I was working on some music for church that evening.  Every 10 minutes or so I would go and lay on the couch to try stretch my back out to ease the pain, then go back into the music room.

Ash came in and we were just talking about a few things.  Part of the conversation involved Ash saying “You are healed, you have no pain, you are healthy, and I declare this in Jesus name.”

We kept on talking for about five minutes while I was sitting down.  I had been sitting down for about 15 minutes so I stood up to go to the couch again.  As soon as I stood up, it was obvious that both my leg pain and back pain had gone.  I hadn’t even thought about what Ash said a few minutes before I stood up.

I said, “It’s gone!”  I was still in a little shock that it had disappeared.  I started kicking my leg back and forth in the air to make sure there was no pain, then started running through the house, putting full weight on it and prancing about like a ballerin… Hip Hop dancer.  We were just laughing and thanking God – these things have been happening often, yet we still get a buzz from it and the encouragement we get is much needed.

I am writing this from the hospital before the beginning of my 6th cycle.  Must head into the consult now with Dr Dejan (pronounced Dayan) – brilliant doctor.  Anyway, got to go.

0 comments.

The decision

Posted on May 19th, 2011 by Cam.
Categories: Let's talk.

The decision is that I am healed.

All earthly things are pointing the other direction.  My test results recently have shown the cancer is highly active again.  Kappa light chains were about 150 during my last cycle of chemo (they are considered safe when they are less than 20.  I had my stem-cell transplant when they spiked to 114).  The dull pain in my thigh and ribs has been fairly persistent throughout the trial.  I haven’s seen any scan results recently, but the sensation is enough to know things are not right.

I had a PET scan last Friday.  Some people enjoy waterslides.  I enjoy PET scans.  And MRIs. And CTs – except for the radiation component.  MRIs are my fave because of the sensation caused by the magnetic pulsing.  Anyway.  I am not even remotely interested in the PET scan results.  I know enough from my own body to know what they are going to show.

For whatever reason, this trial with Velcade is not working for me anymore.  This sounds disheartening, but for me, I can’t help but be excited.  It is going to be a very interesting 6 months.

There are some big decisions to be made, but Ash and I have been praying that God would make it clear to us what direction to take, what decisions to make – especially in regards to when to stop treatment.  I feel this decision is closer than what we thought it was going to be.  As options become limited, decisions become easier to make.  The decision, is becoming easier every day.

I will be having a talk with the trial Doctor next week regarding when to stop the trial.

Ash and I are having to completely rely on God for any change to this situation.  This brings waves of excitement as we believe God’s word is good on this matter – healing has been paid for along with forgiveness for sin.  God speaks about about it in the same breath.  We have no other hope.

I mentioned the waves of excitement.  This is another way of saying there are times I still get overwhelmed by sadness with my current condition.  I have had many great days where pain hasn’t been a huge factor.  And then there are days where I bury my head in the couch begging God to take the pain away, to heal – the healing where pain, sickness, disease is literally taken away.  That is what I long for.

So that brings me back to the decision.  The decision is that I am healed, based on what Christ did in taking on our sickness and disease.  It is our decision to trust entirely in that reality, and along with that make decisions which demonstrate that belief.  One of those decisions is to stop treatment.  If we believe what Christ did was good enough, then it is good enough to act on.

There is so much that is going on in our lives at the moment that I will write about later.

3 comments.

Last Friday.

Posted on May 10th, 2011 by Cam.
Categories: Let's talk.

Last Friday I received results that were less than favourable.  My Kappa light chains have gone from 20, to 40, to 140+ in the last month or so.  This is unexpected.

We have been feeling the opposite.  I feel quite well and although there is significant pain in my ribs and thigh, we believe that is being looked after.  We have never felt as confident and provided for as we have since praying as we have been, and believing as we have.

Still, the news did not faze us at all – it was literally business as usual.  The praying just got more intense, more specific and more encouraging.  There is more going on than a focus for healing.  A lifestyle that reflects God’s truth is a priority.  Until I understand the true nature of God, the more I feel I am running around in useless circles, trying to do His job.  I could do without this running around at the moment.

Wedding plans are coming along superbly.  We feel so provided for, and we believe the destructive events that led to the postponing of the first two dates have been turned into something better for us.  The last few months have been incredible.

This week, I have a PET scan and a few more blood tests to get through before they will work out some medical options for us to consider.  The closer these medical decisions come, the closer the reality of Christ’s healing becomes.  So we trust, we get excited, we have absolute peace and our hope grows every day.  Very much a win/win situation here.  I feel I have everything I need.

We are prepared for an amazing year.

2 comments.

The count.

Posted on May 3rd, 2011 by Cam.
Categories: Let's talk.

The last few weeks have been quite full on, and very significant.  One of the highlights was having Ash’s brother Jai over for the Easter break.  This guy doesn’t stop looking after people and we felt like we were the ones on break as he cooked, cleaned and inspired us to go to the beach more often – we just had a great time with him.

There were significant breakthroughs in prayer also.  After injuring my back one night, I spent a couple of days being quite limited in my ability to move much at all.  Ash and I have been spending a lot of time praying with authority over the cancer – commanding it to go and pursuing prayer with people who believe healing is possible.  I was lying on the couch, unable to move much at all because of my back pain.  I prayed with authority that my pain would go, and sure enough, it went.  I got up, walked down the park to meet Guennadi, then went to pick Ash up from work.  I was able to run across the road quite freely!

A couple of days later, I was experiencing whole body pain more than usual.  I went to bed talking to God, just expressing how tired I was getting because of the body pain.  I still have the mindset of unbelief when I see people walking or running.  I can only imagine what it is like to move with such ease.  After letting God know of my frustrations and what the end of a rope looks like, I fell asleep.  I woke up at 1am quite abruptly – it was a peaceful awakening, but it was sudden enough for me to ask God why had he woken me up.  I felt prompted to pray over my body specifically for areas of pain as we have been learning to do recently.  This lasted half an hour or so before I fell asleep again.  The next morning I woke up free of pain and a significant amount of energy.  That day, I was able to work pretty much the whole day doing gardening, clean the house and pack up boxes of stuff.  I had no back-pain, heaps of energy and my body-pain was not noticeable other than being unfit!

I cannot deny feeling significantly better after praying during the last week or so.  I have no need to make this stuff up.  Others have witnessed the change also.  I feel there is more to come too as I still have residual pain in my left thigh and ribs.

I have just started my 5th cycle of chemo today, so I spent the day at the hospital.  I got results back that could have been discouraging, but I feel more excited than discouraged.  My kappa light chain counts from two or three weeks ago were up to 40 (considered safe below 20).  I will find out what my counts were from today at the end of the week.  This was quite unexpected.

Initially I was disappointed, but that turned into excitement – I feel God’s healing trumps the counts – low or high.

Ash just reminded me now on the phone that those tests were done a while ago and a lot has happened since then.  Much prayer, heaps of encouraging breakthroughs with pain and other experiences that have built our faith.  We haven’t even been entertaining the thought of “what if I don’t get healed?”

Our focus is not on healing.  It is on living to honour God, planning for an abundant life and expecting His promises to unfold.  We have seen, heard of and experienced more miracles in the last few months than we could imagine.  That alone has been worth gold.

I would like to pay tribute to Tim Gregory, a legend of a man who was a great inspiration to me since meeting him at Chidlow Church about 12 years ago.  After being diagnosed with mesothelioma last year, he died last week at a ripe old age.  We all wish he had another 20 years or so.  His character and personality was too large to fit into anything less than a full set of years.  He leaves a great legacy, and we will miss him till we meet again.  That is all part of the deal in the hope that we have.

2 comments.

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