Give Us A Sign

During a conversation today with a support worker from the Leukaemia Foundation, she commented how relaxed Raymond and I appear about my health.  I told her I think living with cancer has gotten easier as the years have gone by.  I’m not sure that’s entirely true.  In some respects it is.  I’ve gotten used to the frequent hospital visits and the way the system works.  I usually know what to expect. 

In other ways it gets harder as time goes on.  My body is tired from having round after round of treatment.  I miss having my life as mine to do with however I please.  I’m sick of being sick.  

I don’t think it necessarily gets easier, I think I’ve just gotten slightly better at knowing how to live with constant fear and this probably makes me appear to be somewhat calm about it all.  It’s funny what becomes normal. 

A few days ago we spoke with a specialist at a cancer centre in Los Angeles, who if I can manage to get the leukaemia to stay stable long enough, is willing to give me a second stem cell transplant.  The only centre in the world to agree up until this point.  He estimates the chances of it being successful as between 0-10% or as another specialist pointed out, a 90-100% chance of it being unsuccessful leading to a poor quality of life and/or death.

The alternative is to live the rest of my days out with a better quality of life for an estimated period of weeks to small number of months.

I worry that I am being stupid for chasing a transplant again when the rest of the cancer centres in the world advise against it.  However, the alternative isn’t good enough for me.  I can’t accept it.  Even though it seems unlikely, what happens if I could be in that 10% bracket of success?  How happy would I be that I took the risk and went against the advice of many to have another transplant?

If I’m going to die anyway what have I got to lose???

The plan for the next few weeks is to not get too far ahead of ourselves.  This is something that really challenges me but is important in terms of sanity.  As an organizer, it’s hard not to want to make plans.  The nature of my disease and treatment results makes it difficult however to make any plans.  Trying to do so leads to severe anxiety.  Raymond is brilliant at focussing on what is in front of us at this very moment.  He manages it so beautifully. 

For now we wait to see the effect this round of treatment has had on the leukaemia and to try get me through the recovery phase without any infections as we wait for my immune system to pick up again.  

As we play the waiting game we look for signs of what is the right thing to do and we take notice as to how easily things fall into place.  We pray the signs come fast and clear.

Chemo, Chemo and more Chemo…

It’s now day six into this more intensive round of chemo; so far so good. We all get nervous when we say things are going pretty well, out of fear of what might be just around the corner.

We often reflect back to the end of last year, which was the dreaded first round of chemo at Waikato Hospital. For those that have forgotten, this included a month long stay, a week of which was in the High Dependency Unit (during which Ange was very very VERY sick), a brain bleed and other life threatening moments – not to mention being discharged with 20kg’s of extra fluid. That treatment started fine enough also, and after five days of chemo Ange said “I’m scared this chemo isn’t doing anything as I’m feeling so well…”

Still, it needs to be said “things seem to be going pretty well”.  There have been just enough little things that have ensured it hasn’t been 100% smooth sailing – that helps our tiny little brains rationalise it out.

Ange has had a few temperatures over the last three to four days and has felt generally a bit blah. When temps spike too often, the medical team take blood cultures and they try to grow bugs from them.

Well yesterday they established that Ange’s PICC line has sprouted another nasty bug; similar to that which brought hospital admission forward one day, last week. Once was acceptable, but twice and it’s OUT. The PICC line came out last night and in went a temporary lure into the hand; this is working perfectly fine while we wait for a new PICC to be inserted (do you like how I say “we” as if  I have to have anything terrible done to me?!)

Last night was a restless night, with itches from Codeine and a case of the runs ensuring any stretches of sleep were limited to an hour or two max. But, we woke nice and early, had breakfast and even got a call in to the States to start the ball rolling on that front.

Well married life is clearly a good thing for both of us. Despite our honeymoon being in Hospital, we remain happy, loved up and positive; we actually have much to be grateful for – I have a superwoman for a wife and Ange has… well… me(?!) HA

Our wedding photos arrived, thanks to some super speedy work by our new friends at Swift and Click. We are excited to work through them deciding which ones to get printed, making online photo books and generally reflecting again on our magical day.

Everyone’s support has been so fantastic and all of us in the extended Smith and Sunkel families thank you all so so much… no really!

Right, I’m getting kicked out this afternoon while the women folk have a mother-daughter movie date. Alright, alright, if you girls insist I’ll round up some good mates and partake in a tasty refreshing beverage at a local establishment – the things I do for this treatment!

Take good care, we feel the love and prayers flooding in… long may it continue!

The Sunkels x

Honeymoon Suite

An infection suspected in my PICC line caused me to be admitted to hospital a day earlier than planned.  IV antibiotics sorted the infection and we were able to crack into day one of my new chemotherapy regime.

This round of treatment will see me having a combo of three types of chemo. Daunorubicin given through my line once a day for the first three days Ara-C, which is administered continuously 24 hours a day for 7 days and lastly, Cladribine. which I will be hooked up to for a few hours a day for the first five days.  Apparently the Polish have used this regime known as DAC extensively in clinical trials and have found it to be effective for patients with acute myeloid leukaemia (AML).  As mentioned before, we hope this regime will knock the leukaemia back for a longer period of time to allow us to seek treatment in America not yet available in NZ.

I am expecting to be feeling rough once the side effects kick in so I’m on the usual anti-nausea meds and other goodies they dish out to support the body and its vital organs.  To help me get through being stuck in hospital again I have come in with the mind set of expecting to be here for a month.  Anything less than that will be a pleasant surprise.  This attitude will help make it easier for me to settle into life on the ward again. 

We have managed to get room 11 back, now known as The Sunkel’s Honeymoon Suite!  Room 11 has a large room with a superb view of the Hamilton lake, a kitchenette complete with fridge and my own bathroom.  Talk about lucky!  There is a fold out bed for my supporters who feel like lounging about next to me or for when they wish to spend the night.  As I type this Mum is currently snoozing in between bursts of reading.  My electric aromatherapy burner is putting out some sweet smells, my salt lamp is shining out a nice healthy light and my cheerful duvet from home has brought some colour into my room.  These are the little things that help me get through a long stint in hospital and help to make my room my own.

I appear to have been spending too much time here recently.  Last night I got out of bed, unplugged my medicine pole from the wall, wheeled it with me to the toilet, did my thing, washed my hands, wheeled it back out…..and on my exit Raymond’s face crumpled into an expression which was hard to tell if he was in severe pain or was in fact laughing at me.  Laughing at me it was.  He was doubled over, unable to explain what on earth was so funny.  Once he calmed down he pointed out to me that the machine wasn’t switched on, I wasn’t currently receiving any medicine and I wasn’t even connected to it.  I guess habit took over and that’s what happens when you’ve seen the inside of these walls too many times!

My biggest goal this hospital trip is to try to maintain my level of positivity while coping with the side effects of chemo and being away from home, to maintain my weight and not lose too much muscle.  

Hopefully I will be able to continue writing my own blog and Facebook updates as that is always a sure sign that things are going well!

Who?? My new name has some of the nurses confused.

Luxury honeymoon suite complete with two single beds....ahhh the romance!

My furry babe comes to visit


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.

Looking Forward

I’ve mentioned in a previous blog post how I think it is important to be looking forward.  If I’m honest, I had been so focussed on looking forward to our wedding and achieving my goal of turning thirty, I had quietly been worried that once these milestones had come and gone I would feel like I had done all that I needed to do and would be more likely to accept death and would start winding down. 

Thankfully it has had the opposite effect!  Being married has made me excited about the future and has helped renew my determination to fight!

It’s the little things in life that I want to fight for the most.  When I picture the future I see myself in my own home with Raymond spending weekends mucking about….there I am, in the garden with my little wheelbarrow, in my gumboots with Holly following me around as I plant herbs and vegetables.

It’s the dinner parties I will have with friends, the time spent with our families, the business I want to set up, the evenings with my hubby and the ordinary “how was your day dear?” conversations we will mindlessly have.

I want to continue to travel.  I want to do some humanitarian work in either Africa or Asia.  I would love to have adventures overseas and around NZ with my husband.  I want to continue to meet new people, be exposed to new ideas and breathe in new smells.

Another thing that recently helped me to look forward towards the future was the idea of maybe having children.  I had resigned myself to the fact that I would never have my own children thanks to my health issues but a recent conversation made it feel like a possibility again.

Before I had my stem cell transplant in 2010, I was forewarned that treatment would cause premature ovarian failure and would leave me infertile.  I was able to do two rounds of IVF to save some eggs.  My partner and I at the time had a discussion with the counsellor at Fertility Associates (FA) about our relationship and where we saw it heading.  Based on the outcome of this discussion and the stage we were at in our relationship we decided things were serious enough to go ahead with fertilising all the eggs with his sperm.  The reason for doing this was because the eggs, now turned embryos have a greater chance of successfully resulting in a pregnancy.  Thirteen embryos are stored on ice ready to be used.

In time, despite our best intentions, our relationship did not last.  However, it was agreed upon that I would still be allowed to use the saved embryos in the future.  Raymond, being one of the most open minded, loving, giving people I know is completely open to us starting a family together with them.

Earlier this year, due to my health and dwindling hope I had made the arrangement with FA (and my ex) that if I were to die the embryos would be available for donation.  It took me quite a bit of time to come around to this idea but I figured it would be an incredible gift for a couple desperately wanting a child and a little bit of me left out there in the world.

I was at Fertility Associates paying the storage fees for the embryos the other day and was also there to drop off a photo album I had made about my life to have on file for any future children.  Raymond and I had a discussion with the counsellor who suggested we keep in mind that should I still be around in a year’s time and in remission that if we wanted to we could look into getting the ball rolling with seeking a surrogate mother.  This would be easier than trying to produce the right conditions in my own body for carrying a child. 

It’s funny, once upon a time that would have been a hard pill for me to swallow.  I guess I used to expect everything to go the way I thought it should go……get married, conceive my own children naturally blah blah blah.  I’ve come to realise though that things don’t always work out quite as perfectly as you think they should but it doesn’t mean that it is any less perfect.  In fact, I think going through the journey of having children that is half of my ex, with my husband, through another woman would be pretty special and pretty spectacular!  

With Raymond’s 10 year old son to an ex wife and his ex partner’s 11 year old daughter he has taken on as his own we would have quite the blended family!  However, all those children would be left in no doubt of our love for them. 

I wouldn’t be willing to use any of the embryos until I was in a position where I felt confident of my health.  I don’t want to cause any unnecessary heartache or knowingly abandon any child.  The thought of us having our own family one day though has got me excited and has me setting new goals for myself.  Despite a wedding and a 30^th birthday that has been and gone there is still plenty to look forward to!

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.

Two significant milestones in one incredible week!

Wow!  What a week!  Two milestones in one!

On Saturday 31-05-14 I married the lovely Raymond Sunkel.  What a perfect day we had!  It was a very happy celebration with our closest friends and family and we were blessed with a perfect winter’s day……clear blue sky with not a cloud to be seen.

I am loving being a wife and feel so lucky to have a truly wonderful husband. 

Our lead up to the wedding wasn’t quite as we had expected.  After the round of chemo that I had recently, we felt sure it would be enough to see us through to our wedding day.  However, once again my blast counts took off and it was advised that if I wanted to make it to the wedding date a week later that I best get into hospital straight away for another round of chemo. 

We were gutted.  We were angry and disappointed at the thought of possibly having to postpone the wedding.  Heart broken.  After an afternoon of being upset and seeking counsel from a friend, we managed to pick ourselves up again and made the decision to stick with our date faithfully expecting that I would recover in time and be healthy enough to enjoy the day.  We felt sure of this date and felt like it had been given to us to celebrate our love.  There was no way we were going to postpone.  The 31^st of May was ours.

The timing would mean that I would not have an immune system at our wedding but it was a risk we were willing to take.  I’m glad we did.  While some of those around me fell ill with colds and flus I somehow managed to make it through unscathed.  I was able to enjoy the day and evening and celebrate with plenty of energy.

It was a spectacular day and we were showered with tonnes of love and were able to express our love for each other and those closest to us.

A few days following our wedding I celebrated my 30^th birthday.  My previous specialist did not believe I would make it to this day.  I am ecstatic to have made it this far.  This time last year I celebrated my 29^th birthday wondering whether I would make it to the next.  I now look forward to my 31^st.

Raymond and my friend Paula got together to conspire to throw me a surprise dinner, which unfortunately had to be cancelled due to me feeling terrible and spiking temperatures (thanks to the leukaemia).  They ended up bringing the party to me though and we had a fantastic evening with our families and friends.

I felt thoroughly spoilt and was made to feel special and very much loved.  I stood back and watched everybody who was there feeling amazed by the incredible people in my life.

So what now?  Plans for a honeymoon have been put on hold for another round of chemotherapy starting this Saturday.  This isn’t too much of a surprise.  The last round of chemo was administered at a dose simply to get me safely through to the wedding.  This next lot of treatment is going to be more intensive and is a combination of three types of chemotherapy that we haven’t tried before.  We are hoping it will help to knock the leukaemia back and keep it stable long enough to possibly head over to America to check out some treatment options not currently offered in NZ. 

I expect to be in hospital for up to a month.  I have tomorrow to pack my bags and put together enough things to keep me entertained during my stay.  On my last evening I intend to squeeze in a romantic date with my gorgeous new husband J

Days before the wedding.  Having my final dose of chemo while finishing making the last of our confetti cones

A sneak peek of our wedding from the photographers

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.