The Pointy End

Posted on June 15th, 2011 by Cam.
Categories: Let's talk.

I came down from York with Mum and Dad this morning so I could get to my midday appointment at the hospital. This was a bit of a trial ‘wrap up’ if you like, just taking final levels and answering a few questions so they can close my part of the study down.

The doctor I was meant to see was a new doctor and, because he didn’t know my history, Dr Brad took me straight in and spent a good chunk of time with me. We had a good chat, and Dr Brad is always straight down the line with me.

As some of the results were in, we checked them out. All organs are functioning really well, aside from kidneys that are a little high. My creatinine level about a month ago was 90 μmol/L (normally around 60 μmol/L) and the trend indicated it was increasing which is not good. The kidneys usually take the hardest knock with MM, overloading them with toxins as well as keeping up with the body’s normal detox needs. My creatinine levels got to over 200 after my stem-cell transplant ordeal. I do not know what they are after my blood test yesterday, but I should find out over the next few days.

Dr Brad talked to me about my decision to not take on further treatment. I explained to him that I didn’t want to risk getting sick with chemo, risking a hastening of fatal illness or spending my last months with no quality of life ( I remember enough about my stem-cell transplant to not go through that again). He understood.

I asked Dr Brad what the progression from this point would be. Usually, the kidneys would fail due to toxins overloading, then the body would begin to shut down and basically fall asleep. I was thankful that the process was so simple and it sounded painless. I asked what kind of timeframe he would expect this to take place. It would of course depend on what results come through over the next couple of days but he said a realistic expectation would be between two weeks and a couple of months.

I didn’t flinch as this wasn’t anything drastically different from what I was expecting, and it is not the reality I adhere to anyway. What Dr Brad said was completely understandable and appreciated from his vast experience and knowledge of the disease, but it is far from what I have my hope in, so it changed absolutely nothing for me.

I didn’t feel worried walking into the hospital, didn’t feel at all surprised during our chat, and didn’t feel at all fearful about the future when I was walking out. I say this because I know what I used to be like. I struggled to hold things together when I had been told similar news – and that was when we had treatment options! Not there is nothing, and I feel completely and utterly confident and peaceful. This is definitely the peace that flips logic on its head – the peace that God promises believers. I have it in truckloads – there is no other explanation for it. Some people have a peace that comes through resignation. Well, I haven’t resigned – quite the opposite – we are just cranking up our battle-cry a notch or two.

The peace that I feel is not from denial either. I know I have seen enough friends die from the same or similar diseases to understand what is denial and what is not. I know the risks, stats and progression of this disease enough to understand what it is capable of. I also have a growing understanding of God’s unlimited healing power and that provides way more in hope than a limited medical solution. I will be forever thankful for the medical staff and resources that have helped me get to this point.

It is quite unbelievable to think that a prognosis of 2+ weeks would be given to someone who looks quite well, can run and skip around (a little limited mind you:) , and has a furious determination to be married in two weeks! Apart from being a rather large inconvenience, I really don’t have the time to die!

We pray quite specifically at the moment that the tumor in my back will disappear, break down, vacate, take leave, desist, expire, become an ex-tumor. I will write about this process another time, as I am again beginning to come under the wise counsel of endone who tells me I should get some rest. That is the first time I have heard a narcotic say something responsible. I usually hear, “You wanna piece of me?”

8 comments.

Very sleepy

Posted on June 14th, 2011 by Cam.
Categories: Let's talk.

Snuggled up in bed on the farm up in York, Mum and Dad home from Port Hedland, wintery night, fire going, endone finding its way to every part of my nervous system – life is great!

It was a spontaneous decision to come up to York tonight with Ma and Pa, but they just got home today so decided to pick up some things from here and spend some time.

The weekend was tiring, but really interesting. Ash and I caught up with sister Carms Saturday morning, but I had some acute pain becoming more and more of a problem. The pain was in my back, right where the tumour seems to be. The tumour pain was significantly greater than I have had before, so much so that I knew we had to go to the emergency department for pain management. I had very few drugs at home for pain, and I knew I couldn’t last until tomorrow (Tuesday) for pain relief.

After having a thorough checkover, they let me go with scripts for high doses again. Not happy that I am back on the oxycontin, but happy that the pain is managed. It is definitely the oxycontin that makes my body sore when it is needing more, like when I get up in the morning. If you are on oxys, and you feel you can’t come off because of body pain – it is the oxys that cause the body ache – get off them!

I am finding it difficult to write as I don’t have a clear mind at the moment. But we plod along…

We had prayer over Skype from a guy at the Healing Rooms in Bethel Church in Redding CA. Very encouraging and we are seeing positive results through prayer here, there, everywhere.

I can’t keep my eyes open. Will wrap this up. I don’t feel afraid at all. I don’t feel worried at all. I just retain this awesome sense of excitement, and I know it isn’t the meds. What a wonderful life I have!

3 comments.

PBTW

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

Stands for “poo bum tit wee” -it was the swear word my folks used to joke about when trying to find appropriate words without using the more crude variety.

I thought of similar words tonight as I took a shower, and for the first time actually looked at my back in the mirror. I have mentioned my difficulties of sleeping on my back due to the pain on the left hand side, and now I see why.

I guess I wasn’t ready to see the bump. I have felt it with my hands before, but to see it took me by surprise. I won’t put any photos up now because it won’t do anyone any good. I will put them up once they have gone – then we can do the obligatory ‘before’ and ‘after’ shots. I have to say, these ‘before’ shots suck. I remember the day when all I had to do was pout and love the camera.

Last night, I came back from having prayer at the Healing Rooms and I was feeling absolutely invincible – I had no doubt I was going to be fine. I was there again today and I was feeling a little down, again, the pain and the long-haul getting to me. I still came away encouraged.

Andrea and Brendan are the main two who have sacrificed a huge amount of time praying for me at the prayer rooms, then they go home and pray for me and others. Then they rock up the next day and pray for me again for hours on end. They have inspired me incredibly with how they pray, and they know we are at critical point here now, so they have been incredibly generous and persistent with their commitment.

Tonight, I am not sure where I am. They will be prayers of exhaustion tonight. I am tempted to run with the “Whatever” version of prayer. I know I believe completely in God’s power for healing. Although my faith has taken a beating over the years, it is stronger than ever at this point in time. It is back to trusting God now regardless of what I see in the mirror, feel in my back, doubt in my logic.

I will continue to declare God’s goodness to me – this is not negotiable and I only need to introduce onlookers to my family and friends to leave them with no trace of doubt also. I am well looked after. Ash continues to inspire me and encourage me when I have no courage of my own. I am in the perfect setting to be restored.

1 comment.

The dark side…

Posted on June 8th, 2011 by Cam.
Categories: Let's talk.

Last night I was in large amounts of pain from the tumours in my back. They are big enough now to either press on my rib cage on the left hand side, or make me lean over because my back is uneven. Then there is something under my heart that is taking some pressure too. The pain from these areas can be quite excruciating. Last night, it was enough to make me twist around in my bed trying to find relief from a position that let me rest. In the end, it was back to using a dose of oxycontin again. It was not what I wanted, but the pain has once again become an issue. The good news is I can’t feel the pain in my legs anymore. Haven’t noticed that in a few days.

My GP, Dr Simon, is a brilliant Doctor, and I have been very fortunate to have him oversee my treatment and sort out all the various areas of health over the years. It was Dr Simon who, four years ago almost, had me walk into his office and declare that I needed to see a doctor who specialised in ‘this’!” as I pointed to the big ol’ bump on my sternum. He got the ball rolling anyway, and has been fantastic ever since. Dr Simon called me into the surgery this morning to sort out my pain issues. So now I am back on patches, endone, and sleeping tablets.

This is the point where, supposedly, things are supposed to get difficult, I suppose. Well, I can vouch for that supposition, as I can’t remember doing anything easily for quite some time. This circumstance certainly is wearing on mind and body.

Although it would be easy to put across an impression that I am handling this time well, I want to acknowledge that it has been far more difficult that I could ever express, and I find myself crumbling again, confused about what to do next, mourning the time it seems I will lose with family and friends, mourning the loss of the things I didn’t get to do or experience, constantly fighting feelings of regret and disappointment. These feelings exist even in the midst of trying to stay positive. I have a huge amount of hope for a future and believe that healing is possible, but I still can’t stop crying each time I say goodbye to my nieces and nephews after spending the morning with them. I have so much to lose, and it is that ‘so much’ that I am becoming more and more thankful for.

I feel I am completely in the middle of the tug-o-war between what I have my faith in, and the direction that my body is going. I know the fear is looming that the next time I am forced to go to the hospital it most likely will be the one-way trip. The tumours are growing as rapidly as they did last time and I ended up in hospital for the week and then back on chemo. This time, there is no treatment planned. Although this fear is looming, I don’t feel it at this point. I feel sad for the emotions that run through me and others at this time, but I grin because I know there is hope, and that is enough for now.

4 comments.

Prelude

Posted on June 5th, 2011 by Cam.
Categories: Let's talk.

This week has been tiring, and I am trying my best to not get worried about my pain levels. Physically, I find things changing quite rapidly. I have my good days and bad, but recently my legs have been experiencing really sharp pain, but now they are fine. My back has been ok in recent weeks, and now that is painful. My ribs are also experiencing pain. Sometimes I can walk fine, without thinking too much about the joint or muscle ache. Sometimes though, it overwhelms me and I need to lay down, sleep or just rest at least.

I am having prayer at the healing rooms in Perth. The people there have been amazing, praying with incredible faith and authority, and putting in every minute they can for me. We have been thorough and persistent in praying. I feel that a lot has been accomplished through such prayer. Prayer has never been the last ditch effort in this journey – it has always been the first and continuous element in the last four years. But now I guess it has even more significance, in that before prayer was being answered in conjunction with what was going on medically. I have seen a lot of answered prayers through what medicine has done in my treatment. Now, there is no medical treatment, so whatever happens now is without medical intervention.

I am thankful for what medicine has given me over the years (well, mostly I suppose), but I am also thankful that it is over. I cannot imagine how many times I have been stuck, scanned, tested or whatever. I have been happy to sign my body in at the door and let medics have their way with me. I would like to say I have checked out mentally, but unfortunately I have been cognitively trying to process every painful aspect that my body has had to go through over these four years.

It has its upsides. I love a good MRI. I love the way you can just zone out while magnetic waves vibrate through your entire body. Its what I do for kicks. And boy oh boy do I love some of the drugs. One of these last times I was admitted with severe withdraws from oxycontin. My body was cramping uncontrollably and I was an emotional wreck. To go from a state of complete discomfort and writhing around on a bed in physical and mental torment to be completely at peace with a rather large dose of morphine – I will be eternally grateful for whoever invented such drugs.

Now, I accept that it is totally up to God how things go from here, and this excites me, seriously. I no longer have to make decisions about treatment options, as there are no options that I would consider – that is clear. All I can do is trust that God leads me down the path where I can be released from the grip of this hideous disease. I hate it. There is nothing at all right about it. Grotesque.

In this, I feel I am in the best hands I could hope for. I have relentless faith and encouragement in Ash, an amazing family, friends I cannot begin to describe, an incredible medical team at Charlies, and a God who is about to demonstrate something glorious, again, and again. Don’t read between the lines and interpret this as a ‘signing off’ – on the contrary. I consider the writings on The Walk Beside as a prelude to something ahead that is triumphant. Not any of my triumph, but of what God is able to do with something that is this broken. He has already done miracles in my spirit, as well as many physical miracles that I cannot deny. I am called to believe that the best is yet to come – and I do.

There is no disclaimer here, but if this carcass falls to the ground, I don’t want anyone to think or say ‘Well, he got the ultimate healing – no more suffering now’. No, this is not good enough, and it is not healing – it is being deceased, no more, kicked the bucket, passed a ‘use by’ date, carked it… dead. This is not healing, it is the hideously devastating consequence of sin in this world, and it should be hated for every right reason – it steals, kills, destroys. It is worthy of our hate, our anger, our disgust and our every effort to come against it in Jesus name.

So now I am learning to surrender this disease to Christ who did everything necessary to take the power out of death – that has been done. There is nothing to ‘fight’ other than principalities and powers. That is where this battle lies. It won’t be long now before we see a conclusion of sorts to this preface. The fact that there is a definite time frame in place now for some sort of resolution excites me to no end. There is, of course, the overwhelming threat of loss from time to time, but I have not felt it much recently – just more a sense of anticipation.

I do not want to paint a picture of everything being peaceful, happy, certain and easy, because it is far from it. Imagine being in a washing machine, and you know the cycle is just about to end, but you know there is the spin cycle coming up and it is the most intense part. I know this cycle coming up is going to be my most intense ever.

I imagine my body being pain free, and that is enough to get me excited. I know it is possible – I just want it now. No, really…right now.

4 comments.

What the heal?

Posted on June 1st, 2011 by Cam.
Categories: Let's talk.

This is really difficult.

I feel like I should be documenting a more realistic account of what is going on, and I am sure many people could relate to situations that they have been through that have been a challenge. For me, again the biggest battle rages in my mind and spirit – distracted only for a time by what is going on in my body.

What I have shared recently is all true. There is still an excitement that is floating around that is fuelled by the unknown and the possibility I will experience complete healing. I still haven’t broken down yet in uncontrollable ugly-face snotty weeping. I get through most conversations without so much as a glassy-eyed, quivering-lip kind of look – easily covered for with sunglasses and the fact that it is cold outside. I have become quite matter-of-fact about what is happening at the moment. I think I may have grown up. About time.

I was explaining today to a friend that it would seem that my body and spirit are heading in two totally different directions. My spirit pursues life, responds to joy, encourages my mind to make decisions for living and has hope. My body has set a different course. It has its mind made up, and all too often it sways my own mind to join it in its thinking. It is such a despicable conflict.

For every bit of positivity I have presented, there has been a fair share of ‘it will be all over in a few months anyway’ , ‘God, are you actually going to do anything?’ , ‘I may as well check myself into the hospital soon’ , ‘better start saying goodbyes’, ‘better record those tunes that have been in my head for 15 years’ , ‘who shall I leave my fake Stevie Ray Vaughan guitar to?’. Even being completely positive and full of hope, again I find I must make practical decisions to prepare for the worst.

I feel I have let go of my striving to achieve stuff before a certain time. This has come more so recently as I have not had the physical capacity to get most things done. This last week has been as much of a relief as it has been disappointing as I have given my workplaces notice I will not be available for next semester. This is a big thing as my capacity to work has been my way of going against my body’s decision to self-destruct.

I don’t want to live the rest of my life with regret about what I didn’t get done. I think a right response is to feel a hate for what sin consumes in its quest to kill, steal and destroy. I hate what it has stolen from me now, and I hate what it threatens me with for the future. I hate what it does to others. I hate it passionately, and feel it is right to go against it at every opportunity. But boy oh boy it is so difficult.

It is difficult to see what God is thinking in all of this. I believe He wants to heal me, and has paid a bloody price for my healing – that has already been done. So I am left wondering why it hasn’t happened yet, or if that healing will happen to me. Sometimes people do get healed, sometimes they don’t. I don’t know why. I feel I have enough faith, but maybe I just think I do.

I have spent most of my life thinking I have to be very careful because if I disappointed God, He would withdraw from me and it would be difficult to recover. It is hard not to go back to that thinking. Sometimes I feel that God is not listening to me because of whatever sin in my life, so I rack my brains trying to dig up sin that may have not been dealt with properly. It is difficult to go through this process without thinking that God is primarily an emotionally-challenged judge.

I am desperately filling my mind up with truth about who God is, just in case that helps change my situation. It can’t hurt! I have spent 4 years searching for reasons why I haven’t been healed. The amount of self-condemnation that accompanies this thinking has been overwhelming, not to mention the condemnation that has been donated. I think this thinking has been one of the most harmful. There must be a better way.

Well, I don’t want to be someone who dies early and leaves people confused about what went wrong. I mean, I still don’t know why things haven’t got better. I know many have their theories, and unfortunately the ones I am most familiar with involve God being disappointed with me for a myriad of reasons, so he holds back his gift of healing. So many people came to Jesus in the Bible, asking to be healed. Some begged. Some didn’t even ask. Jesus healed them all. I can’t find any occasion when he is just about to heal someone when he stops, points out to them that the religious-law-police had seen them texting on their phone whilst driving (lets ramp it up and assume it was on the Sabbath, on the way to watch Harry Potter, listening to Meatloaf), so he withdraws his decision to heal them. Maybe I just haven’t read that chapter, or maybe there were an unusual number of sinless sick Christian people needing miracles back in the old days. Either that or he was conditionally compassionate.

My hope rests on what God can do between now, and later, and that would be immeasurably more than all I ask or imagine, according to his power that is at work within me.

6 comments.

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