Day 7 - Hospital Life

I arrived here at hospital a week ago now.  I have fitted back into hospital life surprisingly well.  It didn’t take long to become comfortable with constantly being hooked up to medicine poles and being interrupted all hours of the day and night for more drugs and observations.  

I have quite a nice routine going so far.  Breakfast gets delivered, I open the blinds and look out at the glorious Hamilton lake, I enjoy a cup of tea and muck about on my computer and catch up with what’s happening with the outside world.  Though the thought of being cooped up in a small room for another two to seven weeks is enough to drive anyone crazy!

I’m visited by a wide range of nurses and staff members as they go about their daily duties.  They are always happy to chat and tell me about their lives.

Medically speaking all is going well.  My body is responding to the chemo and my cancer cells have dropped rapidly.  I am now considered neutropenic, which means I am wide open to infection hence the confinement to my little room for the time being.

The Doctors are happy with my progress and while there is a temptation to wonder "what next?", we are trying to focus on what is in front of us at the moment and thank God for the miracles thus far.

The view from my window

Keeping hospital life exciting with a little bit of pole dancing

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 Gift of Blood

Hospital date nights are fun! I managed to sneak in while Ange was sleeping so peacefully, I got to watch Dynamo and play on my phone while she snoozed, then had the joy of seeing her excitement when she noticed me in the corner!

Along with tonight's dose of chemo, Ange also has some whole blood going into her body. As previously mentioned she also received two lots of Platelets today.

For those that don't know, really simply, Platelets are the part of your blood that cause it to clot whenever you bleed (effectively stopping you bleeding to death when you get a nasty paper cut).

Today the blood bank only had enough Platelets for one dose but she needed two, so they called one of their regular donors up to come in and make an urgent donation (which they did). The same story applied for the whole blood.

I stood by Ange's bed earlier, I looked up at this bag of fluid that had been hurriedly filled by a stranger and marvelled at the gift they gave us.

So here is my request... if you are eligible to donate blood (or other blood products - platelets and plasma), please ring your local blood donor centre and make an appointment to make a donation. If for one of so many reasons you are unable to donate, next time you drive by the centre, give it a little wave and a toot and a smile (to support the amazing work they do there).

Its not until you or one of your loved ones needs blood or other blood products, that you realise what an amazing gift it is. It is a selfless gift that like our friend today, gave without knowing who or why their blood was needed.

Needless to say, I'm heading in tomorrow to make a donation

Ok rant over! Have a great evening, give your family a big kiss and cuddle. 

(Raymond)

The first of many date nights

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.

Crying in front of strangers

I'm tough. Like really tough. Well, not physically... actually I'm pretty rubbish at fighting physically although my job has dictated that I've had to do it a couple of times.

I've been a cop for over 13 years, I've seen things and experienced things a lot of people won't. I've had a gun pointed at me.

See? I'm tough.

I've faced adversary both professionally and personally. I've learnt to separate experiences into two parts, the facts and the emotions. I deal with the facts laid out in front of me and put the emotions that go with those facts to one side... simple! 

Have I mentioned that I’m tough?!

So why is it, in the last week I've cried in front of strangers?

Because my Angie was nearly taken from me and seeing her in pain hurts me.

I'm lucky though, I'm here, right in the battlefront with her family. A lot of other people have to sit at a distance and feel helpless. I count it a privilege to be able to support this amazing woman through this journey.

I've always said to kids you shouldn't ever say you "hate" something. It's ok not to like something but it's not ok to hate.

I hate cancer.

Cancer took my dad at age 52, well before his time. And it can get fucked if it thinks it's going to take my Angie at 29 (or 30 or 31 or 32...)

When Ange entered hospital, every morning I woke up with fear, fear that something happened overnight that I don't want to know. As the days went on, every morning I woke with hope, hope that today the specialist would say "I can't believe it, I've never seen results like this; I think you're miraculously cured/healed". Then as one day rolls into the next you wake up hoping that today you don't get bad news.

People often preface a sentence, often like they're making an excuse for what they're about to say, with "I'm not a religious person". I actually am a religious person. Now by religious I don't mean trying my hardest to abide by a set of rules in the hope of getting into heaven. No, I mean I believe there is a God who created everything and who sent his son to die for us. Shit, this just got serious didn't it?!

My point is, for whoever God is to you (as much as you understand him to be) he has brought Ange this far through her battle with cancer. I don't believe he is a vindictive puppeteer who brought Ange 15 minutes from her death, just to take her from us in the following weeks.

I have to believe there is more to come. Much more. A wedding, parties with friends, a house and a family - whatever shape that might be (although non negotiable, it includes a little fluffy white dog).

I don't know exactly what the future holds or when it will play out, but I have to trust that a compassionate and loving God has things in hand.

North

Lumbar Punctures

Lumbar punctures.

Not the worst things in the world to have.  When you have had well over 10 bone marrow biopsies in your time it’s funny what becomes bearable. Yes, no one likes needles being stuck into their back but I think the psychological torment of it is worse than the actual pain.  I have only had one so far and am expected to have them twice a week at this stage so let’s see if I change my tune by the end of it!  I’m in awe of the medical field though and how many amazing procedures they perform on a daily basis.

Looking a little apprehensive

Marking the spot for the needle

Mother's comfort

Removing a sample of spinal fluid to test for leukaemic cells

Administering a dose of chemo - Aracytabine

Raymond's Version of Events

I asked Raymond to write his version of events of when I was unwell with the brain bleed.  This is due to my poor recollection......

(Raymond)

Watching the girl of my dreams in pain is one of the worst experiences I have faced. For those of you who know our story and/or me, might know that last week is the second time in my life I have cried so hard I could only barely breathe; both times the source of that pain was Angela Louise Smith, albeit these moments were seven years apart and for different reasons.

As my Angie lay in pain in Samoa I knew the timing was right and I asked her to marry me; one of the more emotional moments of my life. While my plan was genuinely to never propose in Samoa, as we shared an afternoon together, I knew the moment was right and even retrospectively I can’t think of a more appropriate or right moment. No regrets.

A moment in time…

On the Friday morning of Ange’s brain pressure, the urgency of the doctors and medical staff left Ange’s family and I in no doubt that we were not far away from losing her. There was one moment in all the madness where time for me stood completely still… they tried to get Ange to sign the consent form to perform a procedure that would have likely led to her death, she signed her name, looked up at me with her crooked face, one eye that refused to open, a cheeky little smile and said “that’ll be Sunkel soon”. I still can’t recall this moment without crying.

I tried my hardest to be brave and show no fear for Ange’s sake, but I knew it was written all over my face, I was terrified. I have experienced some scary times in my life, but this was something else.

The doctors administered a drug that they hoped would take fluid off the brain; the neurosurgeon said we would know within 15 minutes whether the drug was working and to wait in a quiet room while they prepped her for emergency surgery. Ange’s Mum and I made hot drinks for us and her Dad and waited for the longest 15 minutes ever experienced; when I could take it no longer I walked down to her cubicle and was met by one of the neurosurgical team who said the words “it looks like it’s working”.

The next few minutes were standing at Ange’s bedside trying to explain to her that she’s not going to have surgery because they have given her a drug that is reducing the pressure on her brain; she seemed all pretty oblivious to what was happening and we needed to explain it several times.

It’s funny the things that stick out; as we waited to see whether the drug was going to work, I cried in the quiet room where I was with Christine and Ron. I apologised to them for crying, explaining that I wasn’t doing a very good job at being strong, Ron said “it depends on your definition of strength”.

As I write this, the urgency has died down and as Ange has explained, things are moving along. Time to take a deep breath, genuinely and honestly thank God for the miracles he has performed already in getting us thus far and be ready for whatever comes next.

The last week or so has been a blur and one hour just blended into the next, 3am could have been 3pm.

I am taking that breath now and I have the privilege of looking to my right and seeing my gorgeous angel sleeping away peacefully. She is truly a gift from God and I love her with a love barely believable. I look forward with anticipation to beating this wretched disease that makes me sick to my stomach, and can’t wait for a future filled with a wedding, laughter, stupidity, sadness and support from my precious gift.

I don’t know if this will make it to print, if I will be brave enough to allow this to go online. In any instance…

Here’s to life together just beginning Angela xxx

A Misbehaving Head

Until we could get the bleed under control in my head I was given oral chemotherapy (hydroxyurea).  The first day in hospital is a bit of a blur for me.  I believe it was a case of monitoring me, providing pain relief and starting to get my leuakemia cells to drop to a safe enough level before bringing out the big guns in the form of IV chemotherapy.

Fortunately that night my mother had decided to stay the night with me in hospital.  The pain in my head soared to excruciating levels again and I developed a fever.  The night staff were a bit slow to understand the severity of my situation and pain relief was slow to be delivered.  My poor mum had the job of harassing them through the night to get the level of attention I required.  We requested the doctors to be involved but for some reason or another they were reluctant to call on them.  My mum lovingly wiped me down with wet flannels and continued to request pain relief.  Closer to the hours of the morning was when the morphine had accumulated in my body to a level where it provided some relief.  By this stage we were both able to fall asleep.  Now this is where it gets hazy.  The doctor came to check on my vital signs and they found that my pupils were not reacting to light, my face had drooped and the oxygen levels in my body had reached dangerously low.

I was rushed off for an emergency CT scan to check what was happening in my head again.  All I remember is being shouted at by a number of doctors and surgeons and being shifted from one bed to another.  The scan was completed and showed an increased amount of fluid in my brain.  This caused me to not be able to open my left eye.

With a frantic rush, I was transferred into the neuro ward and a group of nurses washed me in bed and catheterised me in preparation for emergency brain surgery in theatre.  In my out of it state I became very cheeky and was having a good old laugh with the nurses as they prepped me.

Throughout all the panic I could hear the surgeons saying that they needed to gather my family and that I may not make it.  All I could think of was that I hadn’t filled out my will yet!

At one stage I remember looking up and seeing Raymond at the end of the bed looking hugely worried and the surgeon explaining how dangerous the surgery was.  A side effect of my leukaemia is having low platelets which are blood cells that stop you from bleeding to death.  Not ideal for someone about to have part of her skull cut out.

The doctor was trying to explain to me what was happening so I could sign a consent form.  Due to his Indian accent my understanding was that he was going to be putting something into my head and taking my “bladder out”.  It turns out he was saying “blood out” as in the blood clot in my brain.  It also turned out he was talking to me about catheters and not capsicums as I had thought!

Theatre was ready for me but the surgeons decided to try me on a drug as a last attempt to reduce the fluid and therefore pressure on my brain.  It would take 15-20 minutes to know if it worked.  Miraculously it worked.  My pupils began to react, I could start to open my eye, and my oxygen levels slowly increased with some assistance.  Phew!!!

That little bag of fluid they gave me quite possibly saved my life.  Just another miracle that I feel I have had recently.  I hope they don’t come in short supply!

An MRI scan was completed to get a closer look at my brain to check and see exactly what was going on and whether the brain bleed was caused by leukaemic cells reaching my brain.  The result came back as positive.  Leukaemic cells had reached my brain and had indeed caused the bleed.

A couple of days were spent in the neuro ward under close observation before going back to the oncology ward.  The oral chemo continued and my counts responded well.  The risk of killing off the cancer cells too fast is toxicity caused by what is known as tumour lysis.  This can be managed by flushing large quantities of fluid through the kidneys to help get rid of the waste.  Side effects can include headaches and fevers amongst other things.  I have been watched closely to make sure that these are the common side effects I am experiencing and not another brain bleed or build up of pressure.   

I am now at the point where my cancer cells have dropped low enough to be able to commence IV chemo to kill them off even further.  In conjunction with this I am also having chemotherapy administered directly into my spinal fluid to try and kill off the leukaemic cells in my brain.

One eyed winky

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.

Dead in a week or two

Samoa was a lovely family holiday although it didn’t pan out altogether as expected.

I headed over to Samoa with a bad flu so wasn’t feeling in the best shape to begin with.  Luckily Dr Steve Joe had given me some antibiotics to get started with.  These seemed to help and for the first few days I felt reasonably good. 

We enjoyed our lovely resort, the wonderful people, some swims and walks along the beach.  Ahhh bliss and how great to spend some time together!

A few days into the trip we were enjoying some snacks and talking rubbish, as you do, when all of a sudden I developed a massive headache.  I’m not the type to get headaches and I’ve never had a migraine in my life so I just assumed that’s what it was and that it was a result of my flu.  Luckily we had some voltaren, tramadol and paracetamol and within a few hours the pain eased off.

Unfortunately these agonizing headaches lasted for a further four days and nights with the occasional temperature spike and vomiting.  Not ideal while you are on holiday but amongst the pain I got to lie in the fresh air and enjoy the scenery.  Another highlight to mention that helped distracted me from the pain I was in was getting engaged to my fabulous boyfriend, Raymond!

A couple of days before we were due to fly home we tracked down a lovely Samoan doctor who did a thorough examination and gave me some pain relief in the form of intramuscular injections.  On the final day as we were leaving I visited him at hospital and got another jab.  This eased the pain.  I was determined to get out there and enjoy my final day after feeling like I had missed out on some of the fun activities.  Off we went kayaking and swimming and enjoyed a final meal together.  The doctor came to our resort later in the day to give me another injection to help with the flight home.  Unfortunately this did nothing to help and the pain returned with a vengeance.

By the time we reached NZ I was in excruciating pain.  With my head in my hands and my eyes tightly shut we had rather a speedy drive from Auckland airport to the Waikato Emergency Department.  Thank goodness for Raymond’s experience in car chases through his job in the police force!

Luckily the Emergency Department was quiet and it didn’t take long for me to be hooked up to some fluids and pain relief.  By this time I was in so much pain I was shaking.  Bloods were taken and a CT scan was arranged to find out what was going on with my head.  The results showed I had bleeding on my brain.  The increased pressure was what was causing the pain.

I regularly have blood tests done and the one before going on holiday had shown that my leukaemia had taken off at a hell of a rate.  I was in desperate need of attention. Thankfully my Haematologist was scheduled on at the hospital and I was transferred to the oncology ward.  I was told if we didn’t do anything now I would be dead within a week or two.  Let’s get started shall we then?!  We were both surprised by my blood test results.  My specialist was confident they would stay stable and therefore felt no rush to see me until I got back from holiday.  I was surprised by my results as a couple of weeks prior I was feeling fantastic.  My energy levels were superb and I was managing brisk walks around the lake every day.  I even sat down in my doctor’s office and declared that my blood results would have improved.  I was sure of it.  It was a kick in the guts to find out my results had gone in the opposite direction and at double the speed.  I was hoping this was just a one off and my next result would show a drop in counts again.

Though I will admit I was worried before going to Samoa when I had developed a flu and my bloods weren’t moving in the direction I wanted them to.  When you have leukaemia and you come down with a cold or flu it becomes very worrying.  A simple cold is no longer a simple cold.  It makes you doubt the strength of your immune system and it becomes a question of whether you are starting down the slippery slope towards death.

                                      

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 bit of history to bring this blog up to speed….

Overwhelming grief and despair, something we’ve all experienced in life at one stage or another.  It’s a normal part of life.  I guess as a twenty-something year old facing your own mortality doesn’t feel normal.  It’s not what you had anticipated for yourself.  Travel, career, buying a home, getting married, having kids and making plans for the future is what you expect to be yours.  We think of it as our right.

As a 25 year old who took care and paid great attention to her health, being diagnosed with cancer was a complete shock.  It felt like a terrible joke and it took a while for what the specialists were saying to sink in.  Part of me refused to believe it.  But sure enough, it did sink in and my world came crashing down.

A bone marrow transplant is currently the one known treatment that can cure me.  I had one of those in 2010 and it’s no easy ride.  However, my specialists were thrilled with how I had done and we all felt great hope for a full recovery.

Time passed.  I picked myself up and looked to the future with excitement.  With a new lease on life and clear goals firmly set I moved forward with renewed gusto.   It became my mission to achieve all the things I’ve wanted to do that were almost taken away.  But it was forever in the back of my mind.  Will I relapse? The anxiety underlies everything.  I tried not to let myself get too excited.  Whilst visualising a life I wanted was important there was a hesitation to become too hopeful just in case.  I wanted time to pass quickly, to get to the one year mark, the two year mark, the three year mark and eventually five.  Five years is when you are officially declared cured.  I was almost scared to breathe until that time passed.

Two years went by. The specialist told me my chances of survival had doubled.  I finally allowed myself to relax a little.  I’m going to make it!  I was given permission to travel the world and was told not to worry about doing blood tests while I was away.  Brilliant! Let’s go!

Great times!  New sights, new experiences, new friends and my favourite part of travel – self discovery.

I’m not entirely sure why, but I got a sense I needed to do another blood test during my travels and I did.  Platelets below normal range.  Shit.  I’ve seen that before.  I knew what that meant.

Being told I had relapsed, that the cancer had come back stronger and my chances of survival were significantly less than good……how can I explain it?  Crushed.  Bewildered. Angry. Disappointed.  Grief so strong that it’s unbearable to be in your own body.  Extreme fear and panic every time reality crashes in that you can’t run away from.  Numbness, weakness, hyperventilation, vomiting.  Helplessness.  I would say for the majority of the time, myself and my supporters have tried to process our emotions separately and in private as a means of keeping each other brave and strong.  I guess the risk with that is further feelings of isolation and helplessness for all involved.

I have been back home in New Zealand for almost a year now.  In that time, my specialist has given me one dose of DLI (donor lymphocyte infusion) therapy.  After declaring he didn’t think it would work he agreed some months later to give me a second stem cell transplant using the left over donor cells I have on ice in Auckland.  I felt very lucky considering they have only given two second transplants in the last ten years.  In went the Hickman line and we were all set to go.  A few days before temporarily moving up to the big smoke for the transplant I received a phone call to say it was no longer going ahead.  My latest bone marrow biopsy had shown the disease was on the move and they didn’t think a transplant was going to work.  There was nothing they could do for me anymore.  A stem cell transplant carries a lot of risks and is a very unpleasant procedure to go through.  It takes a lot of mental preparation beforehand to work up the courage to go in for it especially when you actually feel healthy as you are.  I had built my courage and my hopes up for a cure so to have it cancelled on me was a kick in the guts.  It was certainly a bit of an emotional rollercoaster. 

My specialist had his reasons for not putting me through transplant.  It was to let me live out the rest of my days with a reasonable quality of life.  However, it felt as though he effectively wiped his hands of me.  That is a very scary thing.  I felt hurt and abandoned.  My specialist had lost hope and now so had I.  “How long have I got to live?”  I couldn’t believe it had gotten to the stage where I was asking this question and to be asking someone else how long they felt I was going to be on this earth for made me feel beaten down and angry.  I put the phone down and couldn’t help but cry in front of my boyfriend.  “He thinks I have less than 12 months.”  I felt sorry for the hurt and disappointment I knew he felt.  Now to walk downstairs and into the living room to look my parents in the face and tell them the news.  How do I do that?  And how do I do that to parents who are still yet to overcome their grief from losing a son in the past?

Whilst Auckland had wiped their hands of me, it turns out God was still keeping an eye out.  I have found myself a new specialist in Hamilton who is awesome.  Dr Hugh Goodman has worked so hard to get opinions from other specialists in NZ and overseas and offered to help me push the Auckland team for the second transplant.  Every visit my supporters and I roll into his small room and he does a great job of answering our lists of questions.  He takes the time to read information I provide him with about complimentary therapies I am using and is happy to give me his medical opinion on them.  He is honest, he doesn’t give me false hope but he discusses results and options with compassion and genuine care.  Perfect.

Making the decision of whether to fight for transplant or not was the hardest I have ever made in my life.  The options were, fight for transplant, which has a greater chance of killing me than curing me or go on a drug from overseas to extend my life by about 9 months.  Even though I was informed going down the drug route would be a more pleasant way to die, sitting around waiting for it to happen didn’t feel like an option to me.  I chose transplant.

The waiting game.  Anyone who has dealt with any hospital will know this game well.  It is not unusual to wait 4-6 weeks or even more to find out what decisions / findings have been made even when your life is hanging in the balance.  This is something I have become accustomed to over the past four years.  At first these weeks of waiting were excruciating.  Now I use them as a chance to forget reality and pretend I have a normal life.  It’s bliss.  Going to hospital to see my specialist scares the crap out of me.  Reality kicks in again and everyone’s hope and optimism takes a slight beating.  It always takes a while to gather strength again afterwards.

On the 7^th November I will hopefully find out whether I will be accepted for a second transplant.  Until then I’m going to Samoa to bask in the sunshine with my family and boyfriend.  It will be our first family holiday overseas together and a welcomed break by all.