Quick update

Yesterday I was going to post something along the following lines...

The great thing about my life is how wonderful it actually is. There is a teeny tiny little glitch, but apart from that, everything else in my life is incredible. It totally rocks. And that means that when I do get down about the teeny tiny little glitch, it doesn't tend to last long, because there is so much about it that rocks. So a bit of a think about all the good things, a bit of a bop to my current theme song (Mika's Love Today - highly recommend) and a bit of kissing (hey, I like kissing and he's good at it) and I'm happy again. Very happy.

Blogging like my last post is incredibly therapeutic to me as well. I post my pain, you guys take it on, I feel good again. Of course, it then means that everyone gets in contact being supportive and loving, but you've already done the work - I feel better! Thank you. You'll never know how much having people to listen helps.

Anyway, today's gone a bit custardy, but I still wanted to say the happy things too.

I was supposed to fly up to Mackay tomorrow for a couple of weeks. Saturday is a big Harley Davidson rally, and my neighbours had organised for me to go. I have been looking forward to it for months. Anyway, long story short, my pancreas and liver are not improving - they are getting worse. There is more sludge building up, so we need to do something. I'm starting to get a little bit of pain, and I could have put it off till Monday, but chances are it will flare up and get bad, so I'm just biting the bullet and going in for surgery tomorrow. So no Harley rally. I am SO SO SO disappointed. It was a really hard call.

Anyway, the procedure I'm getting tomorrow is fairly straightforward - even if it's name is not! Stereotactic radiosurgery has officially been superceded! Tomorrow, I am having an endoscopic retrograde cholangiopancreatography/sphincterotomy. How kickass cool is that. It's more commonly known as an ERCP :)

It's just a camera down the throat and into the digestive system, then poking a hole to let the sludge drain away. There's a 5% risk that it will actually cause more pancreatitis. That's why I want to get this done asap - so that if I do get pancreatitis I can get over it by next weekend, when I go back to Mackay for Dave's citizenship and his sister's wedding.

But really it's a very straightforward procedure, not major surgery at all. Chill. If it wasn't for the Harley it would be no big deal at all.

Anyway, going back into hospital tomorrow. Will hopefully be out either tomorrow night or more likely Saturday.

Thanks everyone. You make this journey so much easier.

Thank you all for your prayers. Gill, I love the thought of your lighting candles in the various places you travel. That is beautiful. Beautiful enough to balance my levels of 'Get Jealous'ness. Thank you. And I'm glad God listens to prayers in non-exotic locations as well :)

With much love,

Jess xoxox

Wish I hadn't whinged about being a housewife.

And thus the neverending cycle continues... I'm back on the inside. Again.

On Friday I slept all afternoon so I could go out with Amy that evening. I had (shock horror!) four whole cocktails. Admittedly, two were dodgy $5 Cosmos from Fridays (yes, Jacqui, I went to Fridays... shudder), but the other two were a top quality margharita and a midori splice. Unfortunately the four cocktails made it seem like a good idea to eat some dead animal. Actually some dead cow and dead pig. And I haven't eaten dead animal in over a month. And possibly steak and ribs was a bit ambitious for a first attempt back. (It was so much easier when after a few drinks you just went to Maccas.)

Anyway, I was home by ten thirty. Bit of a tummy ache, and a guilty conscience about the dead animals, but this is a fairly normal price to pay for a night out, so I'm led to believe. Two am I'm in agony. Four am I decide if it's indigestion it's really bad and probably worth the trip into the hospital. At 6am I officially have pancreatitis.

At 8am I have pancreatitis and 'your liver is completely rooted. Most people I see with counts like that are dead'. Oh, and gallstones.

Saturday night was our engagement party. They morphined me up and let me go for a couple of hours. I'm sure I was a brilliant, sparkling hostess. Couldn't drink anything, couldn't eat anything with fat in it. Including engagment cake. It was a bit of a surreal night after a very stressful day. Amy had stepped up to the plate, driven to Caboolture to pick up the cake, spent the morning cooking and getting the apartment party-ready. Jason had been up all night with me, and then spent the day cleaning the apartment. I hope everyone had a good time - we were a bit stressed, and probably not great hosts. It was lovely to see everyone though, and the fireworks were fantastic. (Yes, we had fireworks for our engagement party. Brisbane City Council and the Ekka think that our engagement is worth celebrating. As do we.)

Sunday I think I have gallstones, not pancreatitis. I forget. Monday the diagnosis changed again. Either way, I keep hearing the words 'your liver is absolutely rooted' ricocheting around in my head. Fully expecting to die of liver failure before the end of the week.

Sunday night I learn a very important life lesson. Never, ever, EVER, when completely stoned out of your cracker on morphine, read Hitchhiker's Guide to the Galaxy. It will send your brain zooming through the improbability drive to another dimension. I was up all night because my brain was doing the macarena.

On Monday night I finally see a surgeon. By then they've stopped letting me eat food, but haven't told me why. I'm hungry, sick of the four walls of my room and slowly getting more and more irate. The surgeon came in and said not really sure what the diagnosis is - I don't have gallstones, but i do have gall sludge (so appealing). I do have pancreatitis, caused by the gall sludge. My liver counts are all off the charts, and would need to improve A LOT before they can operate on the other two.

I was quietly getting into a bit of a state by the time the surgeon got around to seeing me and just quietly, I had a bit of a tantrum. Yelling may have been involved. Nurses may or may not have come running to make sure no one was being killed. My doctor may have come back asking if I was going to throw something at him. So I'm not a nice person. So being hungry doesn't suit me.

But it does mean that they realised I was not happy about being shut off in a room for days on end without someone looking into my case. The plan? Starve me. If I don't eat food for a few days, then the pancreas won't have to work and will stop being inflamed. Then, if the liver counts go down, they can whip out the gall bladder.

Interestingly, I slept for nearly 24 hours aftter my tantie. Just needed to vent? Or an interesting insight into patient management by the hospital? You be the judge.

Tuesday through Friday we wait and see what the pancreas and liver do. Oh, no food. Free fluids only. I hate soup. I hate jelly. I especially hate orange jelly. The Mater Private only makes orange jelly. Even red jelly would have made me happy. I do quite like apple juice though. And I went downstairs for a milkshake every day even though they were, let's face it, disgusting. But not as bad as soup - or sorry, hot salty water.

Every day I get a happy visit from the phlebotomist at 5am. Blood suckers. Some I can sleep through. One morning one woman came in and it felt like she stuck a blunt potato peeler into my arm. The next morning she came back, and couldn't get a line in after four attempts (and a go by a colleague). Good morning sunshine.

Friday is operation day! My pancreas is still a bit inflamed, but the CT shows it's okay. My liver function is still high, but has been coming down each day at a 'normal' rate. Let's go ahead.

I love the moment before going under in a general anaesthetic. Most people hate it. It's a great high. I love medazzlum. Pity it only lasts a few seconds and then you're unconscious.

Wake up feeling pretty good. Hey, I'm alive, aren't I? (I've been a bit paranoid since Susan died on Gray's Anatomy after a simple surgery.) I don't remember waking up in recovery but I do remember being back in my room with Jason, and being so happy to see each other.

I ask how it went and his Face turns Serious. He says that didn't take it out. Minutes later the surgeon comes in and confirms that they didn't take out my gall bladder. My gall bladder has a layer of cancerous plaque all over it. (I'll try and scan the pictures in... even though certain people say my insides look really ugly. I don't know about this 'out of the mouths of babes' thing.) Either way, can't take it out - can't get cancerous bit everywhere, too risky.

So... what does this mean? Honestly, it's not great news. Still have gall sludge. Hopefully it will go away and stop blocking up the pancreas and causing all the pancreatitis. Unfortunately possibly will come back because I still have a gall bladder. This means being careful about diet. No booze. No fat. No fun. It also obviously means that my organs are not in great nick.

It's Sunday now and I was discharged this morning. With caveats. After improving for the past several days, my pancreas got worse overnight. (Lipase results on Saturday of admission - 15000. Normal - 100. Yesterday - 80. Today - 400.) So I have to go back tomorrow for more blood tests to see what it does tonight. Don't think doctor was game to make me stay in hospital.

Six months ago it was a lot easier to accept the fact that I'm dying. It's a lot harder now. More than anything I want to live to share my life - my whole life - with the man I love. I've created memories with so many people - my family, my friends - and I'm so sad to leave you all. But to leave Jason, right when we're starting out on our lives together? When we have so many plans? This is one of the happiest and one of the most heartbreaking times for me. I want more than anything to live right now. I want more than anything to be able to keep sharing this journey with the man I love.

Lord, please let me live. Let me share this journey with my husband.

Please pray for me.

Jess

The lucky man himself...

Cancer, cancer, yeah, yeah, yeah... somewhat otherwise engaged...

Jason thinks I should just start calling him TNF and then TNH and see if anyone notices... (I figure you're all smart enough to work out from my last post that TNM's name is Jason...)

So, I left Brisbane believing that my cancer was growing back somewhat more rapidly than hoped after the chemo. That said, my PET scan showed that the cancer is limited to the lymph nodes in my neck and an adrenal gland in my stomach somewhere - no spread to my lungs or liver or any other organs, and the big news is that there was absolutely no uptake in my brain - which means that the stereotactic radiosurgery and all the whole brain radiation was worth it! Hurrah! No motorbike, but no brain tumour either... all in all, a reasonable trade-off. (Although in Brad's book, tearing up $50s by a full moon would also have been a reasonable trade-off.)

But the downside was that after only two months post chemo the lymph nodes in my neck were not only huge (big enough to be felt) but painful as well. It was TNM's first Serious Face Conversation with a doctor, and unfortunately the comment 'once you start having symptoms it will be a matter of weeks' did not pass him by...

However, I have heard many such non-positive things from several of my doctors here in Brisbane who do not know much about my cancer. There is only one doctor who has done the research and spoken with overseas colleagues and can knowledgeably pass comment (although he is often reluctant to). The fact is, what I have is just too rare to make predictions like how long - everything from here on is pure extrapolation.

Anyway, the point is we went to Sydney to talk to the doctor who knows the mostest. And he looked at the scans and said that it was fantastic that there was so little growth everywhere else. And that in fact, the growth in the lymph nodes and adrenals was not actually that fast, it was progressing quite normally, he was happy with that progression. Further, there are more options to treat this growth - there have been some advances in chemo delivery in the past couple of years so there are new options for me (oral Etopocide and weekly Taxol). More importantly from my point of view, there is no rush to do the chemo - I don't think I could face more chemo on top of the radiation side effects. Chemo can be done in a couple of months when I'm starting to experience some real problems.

So where am I? Growth of tumours is normal (stupid word). Not too fast, but not as slow as we would obviously like. I am still having some radiation after-effects - I'm very tired and sleep a lot (if there's no stimulus to wake up, I will naturally keep sleeping till 10 at the moment). Plus my poxy hair fell out again and is giving no sign that it is planning on growing back. In and out of pain from the lymph nodes, so on and off pain medication. Which kinda sucks. But no need for more treatment for a couple of months, or until I start having more problems than just a bit of fatigue and manageable pain. So I can just enjoy the next couple of months.

Which is a good thing, because something else happened in Sydney as well...

Jason has asked me to be his wife.

The last couple of months have been one of the happiest times in both our lives. Neither of us is a believer in love at first sight, but as Jason said when he proposed, he believes in a few things now that he didn't a couple of months ago. Our connection has been so strong from the very moment we met and has only strengthened and deepened as we fell in love. And we know that we want to spend the rest of our lives together, however long they might be. (Longer is better, as a general rule of thumb though). To meet the man I want to be with at such an unlikely time is more of a blessing than I can possibly describe. Truly God looks into our hearts and sees our innermost desires and prayers.

So many people's first reactions has been to say what a wonderful thing he is doing. And yes, it takes a truly strong and amazing man to love me and stand by me and share this tumultuous journey. But as he says, he's not doing this out of pity. (His language is slightly stronger and slightly more outraged at the suggestion.) He is so happy. Being with me also makes him happy. As he says, he's doing this out of selfish reasons. He already thinks it's been worth it.

And that's the greatest gift he's given me - not that he's going to marry me, or that 'he knows what he's getting himself into' or any ridiculous pity notion - but he believes I still have something to give. It wasn't the fear of being alone that really scared me (how can I, with the Four Fs behind me - I am already so blessed) but the fear of no longer being able to love, support and contribute to others. I still have plenty to give. I still have a tremendous capacity to love. And now I have a man strong enough to receive and return that love. I have a partner on this journey.

And Jason comes complete with another blessing - Emily. Jason has a beautiful six-year old daughter. She's gorgeous, affectionate, feisty and has an attitude to match her daddy's (part of the reason I fell in love with him...) To be part of such a family is so much more than I dared to dream would still be open to me.

I am so very happy. And so blessed. And so quietly thankful. Truly we might not always understand God's plans at the time, but he is the Master Potter, and his work is breathtaking. We just need to trust in him and his plans. And I am so thankful that I did. His blessings in my life are so rich.

Thank you for sharing the troubled waters of my journey. I hope you'll join me on some of the more beautiful scenery and serene waters as well!

May God bless you as much as you bless my life.

With so much love,

Jessie