Sunshine and light

Hi there everyone in blog-land!  Heres another update on how things are going.  I started this blog sending the link out to about eight close friends because it was so hard on Andrew having to repeat to everyone how things are going - but somehow its got bigger than that.  I have had some lovely emails from other cancer patients who have found it inspirational which is great, but I thought perhaps I should balance it out with a dose of reality - its not all sunshine and light.  Everyone has their down days and Ive had a really down week this week.

The good news is:

• My bloods came back all ok again, white cells are good, red cells are even up, and liver function is ok.
• The pain in my side turned out to be muscular, who knew I had muscles in my abdomen! So theres one less thing to obsess about.
• Dr Dimwit didnt know anything about sirspheres, even though my hospital is an accredited provider.  So I rang Sirtex and they told me who he has to refer me to - within the hospitals own radiology department of course.  So I dont have to have the spheres in Sydney which makes it a lot cheaper, and also my private health might cover some of it.  So with the quiz night and the Ellabella Prints auction I should have enough money to pay for the treatment.  Thankyou so much to my wonderful friends for supporting us in this way and for all the lovely meals, helping to take the pressure off.
• The quiz night is set for August 13th!!!  I can't work out how to attach the invite to my blog  but if you are interested in coming, drop me an email and I'll send on the invitation.  Someone told me not to put the @ sign in my address to avoid being spammed, so its jfischer at kern.com.au - replace the 'at' with '@'.  Im sure you get it!

The soso news is:

• My CEA cancer markers were tested for the 2nd time so they can be compared - originally they were 42, and they have stayed at 42.    CEA is a protein that cancer cells release into the blood, the higher the result the more active the cancer.  I was devastated that they hadnt gone down and burst into tears, but the Dr reassured me that without the chemo they would have been three times as high, and it shows that the chemo is holding the cancer at bay... there is still time for the numbers to drop.  Wont know whats really going on until I get rescanned in a month.  I need a miraculous result from this chemo so will keep going with my healthy diet, juicing and supplements. I lashed out on a piece of carrot cake this week, yummo- have been dreaming about iced coffee and vanilla slices!

And the bad news is:

• Tests showed that I dont have the KRAS gene mutation so Erbitux wont work for me.  I was pinning a lot of hope on this drug as it has had such positive outcomes, so yet again more tears for me.  Spent the whole day in chemo being a big fat sook.  Actually Im a skinny sook now, woohoo!

I didnt do much to help myself I have to say.  On the way back to the car I walked past a jewellry shop with a half price sale and bought Izzy a necklace for her 21st in case Im not here to give it to her.  How do you write a letter saying goodbye to your kids?  If you can imagine it then you are part way to understanding what a bad day is like.  Dont get me wrong, I am just as determined to beat this as ever.  But a good project planner always has a risk management plan and thats what Im doing.  Just covering all the bases, and when Ive finished writing these letters I can put them away and forget about them - just one more thing to cross off my list.  So Im sorry to be not so inspirational this week, but I think its important that other cancer patients dont think I have some freakish ability to only think positively - my advice to you is dont google survival rates, they are based on averages and we are NOT average!  Thinking positive takes hard work and perseverance.  Only google survivor stories for inspiration and ignore the rest.   End of lecture, over and out!

A quick update....

Wow, iron transfusions are great, everyone should have one!  And it was just in time for a visit from my friend Gnomes from Brissy.  We stayed up til a raging 1am!  Poor Gnomes, she had to suffer through a never ending dance recital but it was great to spend some time with her.  Oh the joys of being an honorary auntie.

Im now on to my fourth chemo cycle and the drugs seem to accumulate with each treatment.  Im coping with it all well, touch wood. Thankfully the iron transfusion has given me loads more energy, but the nausea and neuropathy are worsening and I wake with a blood nose every morning, from the Avastin I think.  Erbitux was approved on the PBS this week, yaaay!  So Im hoping to add that to my bag of tricks.

Ive never been a girly girl who is into hair and makeup.  But now that my hair is thinning Ive developed a sudden affection for it.  I think Im getting a bit obsessive about my hair falling out, its just such a wierd sensation.  It dawned on me the other day that Im half way through the treatments before I get re-scanned.    My mind is starting to shift from managing the chemo to what the actual result will be, and Im getting nervous.   In bed I listen to a self hypnosis CD for cancer patients that targets the sub-conscious with positive messages.  It stops me from having other thoughts.  It works so well that Ive never stayed awake long enough to hear the end!   Im determined to beat this, but what if its unbeatable?  I refuse to think its an option, but I still have my dark moments..I can't help but worry about every pang, twinge and pain - is it the cancer?  I will beat it.  For Izzy and Tom.  For my family.  Because Andrew buys ugly furniture and cant do a ponytail to save himself. 

Don't forget to check out www.facebook.com.au/ellabelllaprint for the online auction that starts on Fri 24 June.  The support from work at home mums has been amazing.  It really restores the faith and I thank each and every person who has contributed.  Massive thanks to Nicole for organising it, in between juggling three small children and the best kids market in Adelaide!  http://www.lollipopmarkets.com.au/.  How does she do it!

Before I sign off, here's an Izzy quote.. 'Don't forget, be happy!'

Introducing Doris....

Hiiya, well I thought it was too good to last - my second session of chemo was two days ago and Im really feeling it.  Nausea and fatigue are not much fun.  So Im officially back on the bottle until later this arvo when I go back in to get 'unhooked' from the chemo pump.  Its a bit disappointing because I was so good last week, but to be expected I guess.  Thank goodness for Mum and Andrew (hubby), both have been working extremely hard during a difficult time. Sometimes I think its easier for me than for them.  Im still losing hair but havent had to bring out my wig yet... we have christened her 'Doris' because she's a bit more Doris Day than Farrah Fawcett as was the original suggestion.  Plus the real Doris is still kicking on and Ms Fawcett's tap got turned off a bit early so thought I'd stick with the more positive name.  I just hope all this chemo is doing its thing and 'lumpatron' is majorly shrinking. 

My chemo is Folfox with Avastin which takes about 5.5 hours to run through the drip.  My blood results came back and liver function and white cell counts are all within normal ranges, but my red blood cells are 'in my boots' and Im very anaemic according to the Dr.  Apparently colon cancer is notorious for slowly bleeding and leaching out all haemoglobin, so my red cell count would have been very low for quite some time.  I thought I was just tired because Im a working mum!  A blood transfusion would fix it temporarily, but an iron transfusion lasts for a month so Im having that done on Monday.  Yet another full day on the drip, but  hopefully it will be the pick-me-up that I need.  I felt so good last week that Im sure this will have me swinging from the chandeliers in no time. 

My good friend Nicole (organiser of the famous Lollipop Markets http://www.lollipopmarkets.com.au/) has organised an facebook auction to help raise funds for my sir sphere treatment.  I didnt get into the trial because of the ovarian cancer but I can still have the treatment if I pay for it.  Here is the address for the auction:  http://www.facebook.com.au/ellabellaprint.  It starts on June 24th so check it out!  It is very overwhelming to have so much support, especially from strangers.  So now I have two awesome Nicole's helping me out!  The other Nicole is arranging a quiz night - she runs http://www.paintnaturally.com.au/ so pop in to see her on Unley Road if you need decorating advice - her range of Florence Broadhurst is amazing and Im sure I don't need to sell you on the benefits of chemical free paint.

Anyway, nothing much else to report this fortnight - hope to be feeling much better and full of energy next week after my transfusion!

ps Andrew has invented 'vertical planking' - its hilarious, but he wont let me take a photo of it!

Planking is an artform

Hi, well my first round of chemotherapy is over..feeling great today! Had a few yuck days last week. I was prepared for nausea but it was manageable. But you can't do anything but give in to fatigue. So while I have been 'planking' in my bed, mum has been Awesome (with a capital a) cooking, cleaning and running around after the kids. The Picc line is not really a bother except I have to be careful with it and wrap my arm in cling film to have a shower. My hair is still falling out but in strands rather than clumps. I think after the next chemotherapy it will be time for a buzz cut, but until then I am shedding more than the dog!

My friend Miss N has got together a band of likely lasses to organize a quiz night to help cover the cost of the sir sphere treatment. Thank you so much to each and everyone who has offered to help, it has been quite overwhelming and I will confess I shed a tear when I heard, just to think that they would do this. It will certainly help take off the pressure, god knows my poor family has had enough of that - it's luck changing time folks! If anyone else would like to help with the quiz night let me know, perhaps you could donate a prize? I suggested a bald theme but for some reason no one else was keen, lol!! I'm back for more chemotherapy on thurs, so keep an eye out for me planking- you just never know where I might turn up!!!

Goodbye hair!

Boo hoo, my hair started falling out today......

Game on!

Hi everyone,
 

Ive finally found a quiet moment to post a quick update for anyone who would like to know where my treatment is up to.  Im not going to talk about how my situation effects my family too much as I think thats personal to them, and if they want to share it then they should choose how that happens.  So yet again its all about moi! 

I will say that Izzy (age 9) had a few good cries in the lead up to my chemo.  I think she expected that my first dose would result in me spewing into a pile of my own hair.  Fortunately it was considerably less dramatic than that!   I actually felt remarkably calm and believe it or not, happy!  Finally I have a game plan and and to this cancer I say 'game on'. First I went in to have my picc line inserted in the top of my arm - this is it!  It stays in for months.

The picc line is inserted into a large vein and is threaded up through the shoulder and comes out just above the heart, where the chemo can be instantly diluted so it does the least damage.  It also saves the veins in my arm from getting scarred. 

From there I went up to the chemo room where the staff and volunteers were fantastic.  There are series of rooms, all with lovely outlooks over the city or parklands.  Each room consists of a semi-circle of ageing plastic recliners, all in various shades of blue green.  They are very comfortable though.  When I first started my five hour stint on the drip every chair was occupied by women of all ages, but I spent the last hour on my own as one by one they snuck out without my noticing.  (I guess my book was better than I thought).   I expected there to be chatting during our long periods of reclining but to my suprise everyone kept to themselves. I have chemo every fortnight so I wonder if it will be the same group of ladies.  Sometimes its good to keep to yourself, but other times a chat can help break up a boring day.  So basically, I just sat there for five hours on the drip and.....nothing happened!  I  didnt feel sick, my hair stayed on my head and I didnt puke!  Now I am at home with my portable pump that looks like a babies bottle, except it is much more sinister and full of very toxic chemicals. This is it....

Chemo is really toxic stuff.  I hope my 'lumpatron' is screaming in agony as it shrinks and dies!  So the ovarian cancer might be a new primary cancer, or it might be a secondary from the original colon cancer. We want it to be a secondary, because then the chemo will shrink it too.  Otherwise it will be completely ineffective.   So far the chemo has given me a bit of nausea that is under control, and some neuropathy.  Anything I touch that is cold feels like freezer burn, and there is a constant metallic taste in the mouth.  A couple of people have been brave enough to ask if I had to have a stoma (bag), and Im happy to report that although I had 45 cm of bowel removed I didnt need one, for which I am very grateful, and everything is back to normal.  So the game plan as far as Im concerned is:

• Three months of chemo
• Get rescanned, find out the chemo worked amazingly well and everything is substantially shrunk and some tumours are even gone
• Surgery to remove the ovary
• Three more months of chemo
• Sir spheres direct into the liver
• Get rescanned, find out the liver mets are clear on one side of my liver and the rest are operable
• Shock the pants of Dr D who then has to eat his words and give me a liver resection
• Dr Handsome will have fallen madly in love with me by that time, but of course despite his fantastic accent I will spurn his attentions for my fantastic husband, lol!
• When I get the all clear, we will celebrate by opening one of our special bottles of wine with our favourite friends. 

I found a couple of quotes that have inspired me this week.  The first is from a mesothelioma patient and statistician who was expected to live for 8 months but survived for 20 years. He said that 'variation from the median is the new reality'.  The second quote 'see the doughnut, not the hole' is from that other great philosopher Homer Simpson ;-)

I couldnt finish up without a few words of thanks... to everyone who has been messaging me and texting me - your words of support have been great. Sorry I havent been able to catch up with everyone, but things will get a little less frantic now that Im getting settled into a routine. Special thanks to Miss L for a lovely lunch,  Miss S who unexpectedly got saddled with my job and is doing fantastically as usual (I miss you!), Miss B for offering to help with the kids and suggesting a fundraiser to help with the $18,000 we have to find for internal radiation therapy (anyone with ideas let me know) and the divine Miss M who arranged for a friend in Holland to send me these clogs.... I laughed my head off!!  Love'em!   Until next time, keep smiling!

Last week I had a rather unpleasant biopsy to see if I had cancer in my womb as the pet scan had picked up a 'hot spot'.  The results were inconclusive, so my Oncologist scheduled me for an urgent D&C for a certain result.  The Gynae registrar called back yesterday.  He said they had a meeting about me, and I dont need another surgery as there is 5cm mass in my adnexal region (ie ovary), so I am off the sirflox trial and I need to start chemo asap.  That was his way of saying I have a new cancer in my ovary that is not related to my other cancer.  Close your eyes if you are sensitive to foul language, but for fucks sake why didnt they pick that up in my first surgery on that ovary when they were having a good look at it?  Why didnt the pet scan, 2 cat scans or MRI pick it up?  And why do I have to have another brand new cancer?  Not bloody fair.  I mean really, this is just not right when Im fighting so hard to stay positive.   I cant have it removed because chemo stops cells from growing, so the body needs six weeks to heal first and I need to start chemo next week.  Im sooooo frustrated, angry, stressed, depressed, pissed off, upset... you name it!  I will get over the shock of it and get refocussed on being positive and getting well.  Im back to Oncology on Friday so will see how that goes. 

I am fortunate to have so many wonderful friends who have offered to cook, clean, pick up the kids, babysit.... travel down from Qld to visit, arranging prayers to be said.   So far my friends have organised for the Lutherans, Catholics and Buddhists to pray for me so Ive got a fair few bases covered there - not bad for a heathen!

I tried on some wigs during the week so my bald head doesnt scare the kids at school, but seriously I looked like an overgrown muppet!  Might stick to hats unless I can find something decent.  Ive got long hair at the moment so Im thinking of cutting off my plait and stick it out the back of a hat - at least I can say its my own hair! I think we will have a ceremonial hair cutting event and make it a a bit of fun, Im sure Izzy would LOVE to play hairdresser!  Might be best not to include Tom in that one, he has already given himself a haircut at school this term!!

Now Im in a philosophical kinda mood so heres my thought for the day....Sometimes when you are bogged down with work and running around after kids its easy to lose perspective on the important things in life.  Take a moment to slow down, stop and enjoy the simple things... you might just discover you are happier than you ever realised!