Monday, October 29, 2007

Feeling so much better

With the little help of an immense amount of sleep, I suspect. Averaged about 14 hours a day since Friday.

I have also broken the immense list down into small chunks and will just achieve something each day. Nothing major. Basic organisational skills.

Chemo makes me feel like crap. I forgot for awhile. Chemo makes me feel like crap. It passes.

I need to take it easy when feeling chemo crap. Sleep lots. And it will pass.

But I'm glad I keep a record of the fact that sometimes things suck. I'm really not 'brave and inspirational'. I just get up each morning and get on with it. Actually, sometimes I don't get on with it, I have a tantie. And that's okay.

God had it under control when I didn't... I knew he did :)

Be well.

Much love,

Jess

Sunday, October 28, 2007

So completely overwhelmed

So I've been very quiet for awhile. With good reason. I am so completely overwhelmed at the moment.

I started chemo and the new therapy (which is just another drug, so I tend to refer to it as chemo) again this week. We also finalised the move (well, Jason did) and are trying to settle into the new place. I have an enormous list of things I feel like I should do and I feel pretty lousy because let's face it, I just started chemo again.

The list of things I 'should' do is ridiculous but real. The craziness is getting to me and now that my energy levels are low and I feel sick a lot of the time I am just overwhelmed by it all.

And I feel hugely guilty for not posting more regularly. That's why. I'm overwhelmed at the moment.

I'm having trouble uploading photos as well. Add it to the list.

Please forgive my silence (both online and personal) at the moment. I am trying to keep it together.

I hope things will settle down soon.

I did a full set of CT scans before starting chemo and we are starting chemo again at just the right time. There is a big growth of tumours in my neck (which is physically visible, so no surprises there)and some under my right arm. It has also finally spread to my liver, but still in early stages there. We are hoping that the chemo aspect will shrink and slow the tumour growth and the new drug (Avastin)might kill off some tumours completely. Thus the rush to start chemo.

I hope things will settle down soon and I'll be a bit more human. There just seems to be one thing after another after another at the moment. Any single stress would be manageable, but combined all at once like my life is at this moment is just a bit... overwhelming.

Please keep praying for me. God is truly in control at this point - I admit wholeheartedly that I am not.

With love,

God bless,

Jess xox

Friday, October 12, 2007

Incommunicado

Off on honeymoon first thing tomorrow morning. Two nights at Maleny and then two nights at Marcoola Beach (scene of the great chess escapade).

More when we get back next week (including the official photos...)!

God bless,

Jess xoxox

Wednesday, October 03, 2007

That's just the way it is...

And today I feel brilliant again. Very happy, lots of energy. Enjoying Rach's visit immensely.

Life is like that.

Jxoxox

Tuesday, October 02, 2007

Warning! The whingy b***** is back!

That's quite enough sunshine and light. If you want happy lollipops, ignore this post and read the one posted last night, below. It's long and it's happy and joyful and all the rest of it.

Happy Jess was getting boring. Worse, she was getting repetitive. No one else with cancer wants to hear how well things are going for other people.

So cranky Jess is back and she's having a whinge. Please note: I will feel very bad about whinging as soon as I've posted. Please note that happy Jess is my usual state, but I still have cancer so it's important to record the crappy bits of the journey too.

I had a terrible night last night. I have been bone weary exhausted for the past week - real trouble waking up in the mornings, low energy. A day or two ago I also came down onto a lower fentanyl patch, and I'm now going through the worst withdrawal I've had since going cold turkey on pethidine five years ago. This is the first time I've had this sort of problem coming off fentanyl patches (which I've been on and off - mostly on - all year.)

All the muscles in the back of my legs and lower back ache, and I have restless legs - I can't keep them still. I've got terrible fidgets and cannot get comfortable. So I also cannot sleep. I just roll over and over like a rotisserie chicken. And I'm hot cold hot cold hot cold. And it would be so easy to get rid of all of this - a single fentanyl lollipop would make it all go away. And mean that I have to start at the beginning again to come down. So no. I get some relief if Jason rubs the back of my legs, but it comes back as soon as he stops (and yes, he needs sleep too).

And now today, since I had two valium to try to knock me out last night - unsuccessfully - I'm still groggy. I hate this.

However, by tomorrow it should be all over. I hope.

This is one of those times where it's not always easy to see God's plan, but I still need to trust in it. (See, I don't just spout that stuff when things are going well.)

I'm still loving married life. (He's currently hanging out the washing.)

See the post below for a more accurate description of where I am. This post is just a quick snapshot in time - the one below is more of a longer video.

This too will pass.

God bless you.

Jessie xoxox

Monday, October 01, 2007

Brevity is all well and good in its place...

And Mrs Jessica Anne Horton, signing in...

Very short post, I'm afraid. There is so much to say and I will say it soon, but after a few very exhausting weeks, my body is having time out and I am completely bone wearyingly exhausted. Having trouble waking up in the mornings and then very low energy to get through the day as well. Trying to come down from some pain medication as well.

So as a result I'm hiding out a little - which is why I haven't really been replying to messages or emails. Please forgive me, I really am in a low energy place at the moment. I will get in touch with everyone shortly.

Thank you so much to everyone who shared our very special day - whether physically present or there in spirit! It was such a magical day for us, and I'm so glad we could celebrate it with everyone. There will be a proper update (with photos!) soon. In the meantime, Ben and Sus took quite a few photos and I have permission to direct you to their site...

Thank you also to everyone for the extremely generous gifts. We will contact everyone individually in the next couple of weeks to express our heartfelt gratitude, as well. I would also like to put out there - could the giver of the wonderful Circulon pan come forward? It was the only gift without a card that could not be traced back. It was one of my worries, so I should be grateful that there is only one such gift! (I haven't yet worked out what to do if eight givers come forward at this point...) About half way through the opening of the presents, I turned to Jason and said a little uncertainly "You do like red, right?"

We will be moving in the next couple of weeks into a house in Camp Hill, owned by the wonderful Leukaemia Foundation. In the next week or two we will also be undertaking some serious research into some new drugs and treatments that are available to me. They are still very experimental, which means very expensive, as they are not covered by any of the existing medical institutions here in Australia. If anyone has some free time in the next couple of weeks and would like to help with the research, please email me. Oh yes, I have a new email account, which I will be transitioning to in the next couple of weeks - jessicaannehorton@gmail.com. Disteldorf was hard to spell but at least I was the only one around! Even my mother-in-law is J. A. Horton!

Yes, I have taken on a new name. Ideally Jason and I would have created a new name, but we really couldn't make anything suitable out of Disteldorf and Horton. Distelhor just didn't sound right. Nor did Hordorf. So I am secure enough in my identity to become Jessica Horton. Even Mrs Jessica Horton in my private life, although I will remain a Ms professionally. And Jason has had his thrill - the deal was one "Mr and Mrs Jason Horton" when we were presented at the reception, and he got a bonus when Ian presented us that way at the church. Surname is one thing, first name quite another :) Still, we wanted to keep a lot of the traditional things at the wedding (as well as our own touches - ie red shoes!)...

Anyway, more on the wedding another day... sorry!

Well, for a short post, this certainly expanded... but I think it is time to close here.

I might be exhausted physically, but I am so happy. Truly God blesses me everyday.
And you know what? If, as Sarah Silverman pointed out at the MTV awards (why? why? why? Why does my life seem to have bizarro similarities to Britney Spears? Why? She shaves her head after me, takes the same drugs I do (albeit mine are legal) and now this!) that if at 25, I have accomplished everything in life that I will ever do, then I have done extremely well. Life achievement should not be measured in time (he he dies oldest wins) or material possessions (he who dies with the most toys wins) but in relationships (he who dies with the most friends on Facebook wins). And my relationships are so rich - with God, with my husband, with my family, with my friends. And with you.

(Unfortunately the four Fs have copped a beating lately - my interest in food is way down. On the plus side I have taken advantage of this to become increasingly vegan. I no longer eat any meat, dairy or eggs. Check out the China Study to find out why. (Yes, I know, I know - after over a year of steadfastly refusing to touch anything 'alternative', I have now embraced something radical! But read the book, read the science - and embrace the irony! I like irony. There's certainly a lot of it in my life. God has a sense of humour, and sometimes it's really really twisted. It's cool though. I think I like it.)

Either tell the people about the wedding, Jess, or shut up. No one wants to hear you rabbit on about the same stuff you always go on about.

Oh, all right. I'm in the zone.

The wedding was a magical day. I successfully delegated all the stressful stuff for the final two days (the decorating and the catering) to my incredible Mama, indefatiguable Grandma and amazing aunt Sharyn. Who worked so hard to make it as beautiful as it was. And my bridesmaids were incredible as well. We had a lovely day on the Friday, getting our nails done and a little bit of last minute shopping.

Minor crises early on the Saturday morning. Thankfully I'm so well-known in the hospital system now that I can call, ask for a script from whoever is on call, and then organise for someone else to pick it up and fill it. Unfortunately while asking Jason to find something in the medicine cabinet, he dropped it from its very high height and unfortunately smashed a rather large bottle of morphine, requiring a very thorough clean-up. Somewhat stressful. (If anyone is wondering - I know you read this A! - everything is kept in a locked safe.)

We even managed a nap (well, two of the flowergirls and I did!) or at least 'rest time' on Saturday afternoon after hair and makeup had been done. It's one of the advantages of having hair 'done' without having to have it on your head. Mama, Dave and Dad did all the running around while we just relaxed in the hotel room. (Thank you all.)

We drove to the ceremony in our wedding procession - our little red Getz and Amy's little blue Echo, all done up in roses and white ribbon. Very cute :) Amy and Jacqui drove the three flowergirls, Emily, big Sophie and baby Sophie, and Dave drove Dad and I. When we got to the church, Dave and Wray (Jason's dad) walked down the aisle together, then our brothers walked down with our mothers - four brothers, four mothers. (Yes, we have seven parents between us all.) The flowergirls then led off (their cue was Ian's nod, but there were so many people they couldn't see Ian!) and did beeyootifully, and then the beautifully elegant bridesmaids. Then Dad walked me down the aisle (yes, he got teary!) and it was just magical to be surrounded by all the people I love and who love me, down to the man I will share my life with. We were 'entrusted' (NOT given away!) by eight people - Mama, Dave, Dad, Beata, Mum (Mary), Wray, Jan and Emily, and then lit a unity candle to symbolise the joining of such a large family. Each mama did a beautiful reading as well. We sang two of my favourite hymns - How Great is our God and In His Hands, and Ian spoke so beautifully, as always. The musicians were incredible, and it was just a perfect service. Mama has complained that Jason and I stood so close together that because we're so tall, no one could see Ian - he was just a disembodied voice from behind us! There are some parts of the ceremony that I don't remember as well as the others, but one thing I do remember is looking into Jason's eyes and standing with him throughout the whole service.




It stormed outside during the service and then dried up again afterwards so we had some beautiful backdrops for the photos! Our photographer is phe-no-me-nal - I can't wait to see the finished product! We walked down to Southbank for photos, stopping at lots of places on the way... it was just beautiful. It's fun being in full wedding regalia, with cars honking and people waving!

The reception was just beautiful - literally. It was held in the church hall, and Mama, Grandma and Sharyn (and Grandpa and lots of people who helped out!) had made it into a wonderland in red, black and white. The ceiling was filled with helium balloons, there were balloon bouquets on the walls and fairy lights as well. Plus Mary had converted an entire table into a candlelit fairyland, with beautiful decorated glasses, pottery fairy castles and toadstools! It really was beautiful...

In hindsight we should have put more chairs out for everyone though... And my bustle broke, so I had to contend with a train for the night!

We had a wonderful time catching up with everyone (at least, I hope it was everyone - we tried, I hope we succeeded - please forgive us if we didn't!) and dancing (well, Jason danced his required two dances - very well, I thought!). Daniel and our dads' speeches were beautiful. Unfortunately I keep thinking of all the things I wanted to say in mine but didn't - bad preparation on my behalf! The ABC and Kirsten also put together a wonderful surpise - a DVD presentation of some of the footage they have been taking over the past year and a half. It was beautiful, thank you guys!

All in all, it was one of the happiest days of our lives, and a memory we will cherish forever. Thank you so much for sharing it.

We spent a couple of nights in a hotel in the city. I don't think every newlywed couple gets confirmation within 24 hours that they have married exactly the right person, but we did. On Sunday night, we mused that it was a shame that we would never get to wear our cool outfits again, so decided we really should while we had the chance... and my hair was still perfect, of course! So we put them back on, and went for a trip up to the casino...

I did keep wanting to say 'No really! We're not this sad! We are not at the casino on our wedding night!' but we went down to the poker pit so Jason could do a lap of honour. Various gasps of disbelief from the dealers, pit bosses and players - although some fast thinking from a couple of the players (they are poker players, after all...) It was great fun, although I'm not sure every couple would have seen the humour!

When we got home we found that the flat had been transformed into a fairy wonderland, with all the glasses, toadstools and fairy castles left from the wedding, as well as balloons and ribbons and fairy dust! We haven't been able to bring ourselves to take it down, and we plan to have a permanent fairyland set up in the new house. We are off to Maleny next weekend for our honeymoon.

You know all that stuff about how blessed I am, and how lucky I am to have you all in my life? Repeat it here and I really will sign off.

God really does work great blessings in our lives if we can only surrender and trust in his incredible plans. We are so happy because we have so much in our lives to be thankful for, but at the same time we have difficulties to make us appreciate the blessings as well. May God grant you the same. May you know the great peace and joy that floods your heart because God loves you.

May the Lord bless you and keep you, let His face shine upon you and be gracious to you. May the Lord look upon you kindly and give you peace.

Thank you for sharing this incredible journey. God bless you.

With so much love,

Mrs Jessica Horton (tee hee hee!)

PS I bollocked up my change of enrolment form today by signing the wrong name. I'm trying desperately to get my change of enrolment details form in before the election is called, but I keep running into difficulties!