Faith Like Potatoes

I’ve always been a very spiritual person.  Over the years I’ve dabbled with different religions and beliefs.  To be honest, in recent years (thanks to undesirable experiences of church as a young adult) I’ve been very anti churches and anti-Christianity as a faith.  It’s always sounded like a great fantasy to me.  Don’t get me wrong, I have Christian friends who I love dearly and totally respect them and their beliefs, it just hasn’t felt right for me. 

Since relapsing with leukaemia I have somehow drawn lots of Christians around me.  My partner, existing friends, new friends, even strangers….it’s been quite unreal.  I’ve had plenty of opportunity to discuss the religion and I’ve been challenged by a lot of it but also a lot of it has made sense to me.  I’m still trying to figure out how some of my old beliefs fit in with Christian beliefs and at times this has made me feel more confused and spiritually disconnected than ever.  I strongly believe that I have drawn all these Christians around me for a reason though and I am eager to explore that reason. 

I would say the majority of people facing death ponder what comes next and spend time questioning even life long held beliefs.

At this stage I am trying to put aside the finer details and start by developing my own relationship and understanding of God.  I have found myself attending church again and feel a strong comfort from the gathering of people who have come together in unity with a shared goal and passion of unashamedly and wholly praising and worshiping a higher spiritual being.  I’ve never experienced that outside of a church.  The peace and love that can be felt is phenomenal.  They sing as if they are free.

I believe God can heal me.  I’m just not sure why he hasn’t yet.  There are days when I am angry with him.  Days when I am impatient and demanding in prayer.  Perhaps he never will.  Perhaps he has decided I will touch more people’s lives if I don’t survive my journey.  Or, perhaps the joke’s on me.  Perhaps it’s just because he knows heaven is way cooler than earth and wants me to kick back and enjoy the party with him while we laugh in amusement at the people still stuck down below.  I would like to think my time isn’t over yet though.  I’m not ready to leave my loved ones behind and I’m not ready to give up on my dreams.

A friend lent us a DVD that has helped us believe a miracle is still on the way.  A brilliant quote from it was, “The seed for a great miracle lies not in difficulty, but impossibility”.  I guess that’s why I have to have faith like potatoes www.faithlikepotatoes.com


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I finally get it

I finally get it.  I think I understand why some cancer patients give up so easily.  The thing about trying to be positive and hopeful about beating the disease is the risk of crushing disappointment.  There comes a time when accepting death is almost less scary than the possible disappointment of not making it, of constantly dealing with fear.  Fighting is hard work.  At least if you accept death you can prepare yourself for it and expect it.  When you make this decision, it's almost like you are taking back control.  The reason why I finally get it now is because at times I have been tempted to give in to this acceptance.

As I’ve thought more about death I’ve begun thinking more about my life and whether the things I’ve done have made it a life worthwhile.  What kind of legacy am I leaving behind?  How long will people remember me for?

A friend contacted me to say they were feeling inspired by my battle against leukaemia and by my honesty and fighting spirit.  They admitted they had been going through a tough time and had been wishing to die in their sleep.  The sharing of my journey and of my desperation to hold onto life had helped them to realise what a gift life was.  It helped them to view their situation differently and encouraged them to make positive changes towards a happier life.  

I am so grateful that this friend contacted me to tell me how my story has helped them.  It has made me feel like if I was to die tomorrow that my life has been worthwhile and that the disease itself has been worthwhile. 

There is a real comfort in that.


To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Consumed by wedding planning

Since my last stint in hospital I have been very busy planning our May wedding.  It has consumed me.  It suddenly dawned on me one day that I hadn’t given leukaemia much of a thought.  Actually, what is probably more accurate is that it was the first time I had a break from being fearful and in despair.  I almost felt like a normal human again doing normal human things. 

My good blood cell counts came up nicely and once they were at a more desirable level I was put on oral chemotherapy in the form of tablets.  With time this was shown to be ineffective.  My blast counts (leukaemic cells) were starting to climb.

My specialist and I were hoping that they would plateau as I continued on the tablets.  Unfortunately this was not the case.  I was instructed to double the dose.  My blood test results today have shown that they are continuing to climb.  I imagine I will hear from my specialist tomorrow to tell me the next plan……a higher strength of chemo?  A different chemo?

It feels a little bit like a race against the clock with our impending wedding date.  We need to get the leukaemia to stabilize so I can put my fancy white frock on.

We remain hopeful and somehow fairly confident I’ll make that trip down the aisle.

With positive thinking and plenty of prayers we look forward to the day.

Recently we had a huge amount of fun with our good friend Chris Lane from Big Kid Film Productions filming an engagement video.  As always, we can’t emphasize how ridiculously talented we think he is and how much of a joy he is to work with!


To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Discharged!

We sit waiting for the doctors to do their morning rounds on the ward.  We’ve been in hospital over a week now.  Headaches and fevers brought me here for more investigations and treatment.  It’s been a relatively straight forward stint in hospital with not too many complications.  The side effects of chemo this time haven’t been as bad although I have really struggled with arising emotions and the realities of my situation.  Usually I can maintain a certain degree of positivity and cheerfulness but this time I have felt really quite low.

There are pleasant things about staying in hospital…… I particularly enjoy getting to know all the different nurses and doctors and finding out about their personal lives and what makes them tick.

However, when I feel like I’ve done my dash I tend to make this point pretty clear.  My bags are packed, my bed is stripped and I’ve put on my brightest t-shirt, widest smile and my most hopeful eyes.  I am ready to go home.

I answer all my specialist’s questions honestly and let him examine me and try to be on my best behaviour while I wait with baited breath.  Is today the day he will let me go home??  This is always a dangerous game to play with myself.  Whilst putting on a very convincing appearance of being ready to leave I have to prepare myself for the disappointment of being held behind longer.

It’s a funny thing really.  It’s just a room in a building that you hang out in for awhile and yet I’m always so desperate to leave.  Once again, this highlights to me what feels like a game of freedom; that is part of being sick.

Good news!  I am released back into the world of the living and the free.  I will still be required to take things easy as we watch to see what my blood counts do over the next week or so.  I will return every second day for blood tests and possible blood transfusions.  In the meantime, off I go with an armful of antibiotics and strict instructions to return should any problems resurface.

So it’s back to my complimentary therapies and wedding planning while I wait to see what Hugh decides is the next best step in my treatment programme.  At this stage the options are repeating another round of chemotherapy in hospital as I’ve just done or trying me on some chemotherapy tablets at home in the hopes it will keep the leukemia stable.

For now, it’s about resting and enjoying the comforts of home J

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Quite a few tears this morning

I'm feeling a bit down this morning

My breathing is getting a bit better but I'm tired of sleeping sitting up straight hooked up to a huge amount of chords with my only distance of freedom being to the commode next to my bed. I'm awake and asleep with an uncomfortable oxygen mask on.

I'm doing this for my wedding. After that I'm not sure I can do these stints in hospital anymore. I'm at the stage, or perhaps just having a moment, of thinking how long should I be fighting the inevitable? Should I have another battle in hospital just to extend my life by a couple of months each time or do I give in and accept that time is short and just to enjoy it with those I love? 

Option two is beginning to be more and more appealing and is starting to make more sense.

Option 3 -  perhaps I should eat some breakfast and not worry about it for now? Hmmm three is probably a good place to start.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Moments later after all these thoughts my specialist came in to visit me. During this consult we had a conversation we've never had before. If my health all of a sudden goes down hill do I want to be put into critical care to try and be saved or do I want them not to intervene and be let go?

The fact that we're at that point is pretty upsetting and didn't do anything to settle my earlier thoughts and emotions. In fact it has me thinking I'm pretty close to the end. How do you make a decision like that? There will always be a part of me never willing to give up. I'm not so much frightened of death, I'm more so frightened of leaving my family, partner and home life behind.

I don't want to die a miserable painful death but I don't want to go down without a fight. 

Actually I just don't want to go down at all!!!

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

The Easy Way and the Hard Way

A piece of advice for you… if you ever climb a mountain, don’t climb it with Angela.

You’ll be looking at a gentle incline ready to take a sip of water before setting out, when Ange will dig you in the ribs and take you up the sheer face.

And so it is with Ange’s health and healing. There is never a single problem or an easy route, she likes to have multiple issues going on all at once.

And that brings us to today. Today we have found ourselves again in the Waikato Hospital, High Dependency Unit.

A hospital admission that started with an abscess in the nether regions and a rising rate of cancer cells in her system has turned into nearly surgery, a round of intensive chemo, scans and more scans, being hooked up to oxygen and a visit to as many wards on the hospital as she can think of.

So the first round of chemo (first of three this visit), has been and gone. When chemo is administered there is a rapid break down of tumor cells (along with other good cells). To try and flush all these nasty cells out of the body, they give Ange heaps of IV fluids to get her peeing also to relieve the liver and kidneys who are now working in overdrive.

It appears her body hasn't managed to flush all these toxins out of her system and some of it may have settled in and around her lungs. Lungs, I don’t need to tell you are pretty important in getting oxygen into your blood stream and around all your vital organs, not the least of which being your brain.

Well with this build-up of fluid around her lungs, Ange’s breathing became rapid and shallow and a cause of concern.

So the solution has several facets to it (1) increase fluids and give Ange a diuretic to make her pee lots, (2) give her steroids and more antibiotics, and (3) hook her up full time to saturated oxygen and get her to HDU where all of her vital observations are continually monitored with central alarms should things not be going well. Ange also has nearly one on one nursing which helps with Christine and I’s stress levels.

We are all hoping for just a short stay here, and compared with the last visit to HDU she is much healthier to start with.

Still, it makes for stressful nights for her family. We communicate via text keeping each other updated and (especially in my case) offering our expert opinion on why things are happening and what could be done to fix everything.

And through it all, our brave little Angie just keeps on rolling along. She rarely complains.

To finish with a little story. Before coming back to hospital, I had to put Ange on a wedding planning curfew as I would wake in the night and bust her on her phone looking at cakes and dresses and reception ideas etc. I suspect that this hospital caper is all just a rouse to allow her to plan at will. I have it on good authority that after a 4am text was sent to her mother the other night, they were both later seen sitting up in a hospital bed looking at Mother of the Bride and Wedding dresses!

Well, as always we all thank you for your support and ask that you keep Ange in your prayers.

Lots of love from us all.

Raymond's little cow...considering ear tag instead of wedding ring

Having a well deserved rest in HDU

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

A Clear CT - hooray!

A bit of good news.....the CT scan came back clear though Hugh (specialist) thinks the lining of the brain may still be involved.  But no bleed so that's awesome! :)

I start chemo today and will possibly be doing two rounds of it.  The regime is two doses every second day so I will be finished on Saturday and then will have a little break before starting the next lot.

An MRI scan of my pelvis has been arranged for this morning to check things out down there so we can figure out how much of a priority surgery is.  Understandably, Hugh isn't too keen on the idea of cutting away at me with my low platelets and low immunity.

After all the trouble with the lure in my hand yesterday it will be replaced with another PICC line in my arm anyway.  This means all the medical goodies can be given to me via that.

I reminded Hugh about my wedding and he agrees that it is fairly important that I be there :)

Here's hoping the chemo is really effective at knocking back the leukemia!  And hopefully I don't gain another 15-20L of fluid like I did last time and end up looking like a giant marshmallow in my wedding dress! Ha!

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.