My cancer journey

Facing another tiger

10151853_10152099808549506_1894207290_nAs you can see, cancer isn’t the first tiger I’ve had to face! Cancer seems to have paws and teeth greater than the Tiger in Thailand but I intend to strangle it instead of holding it tentatively.

Good news: We found a 4 HOUR CAR PARK AT MAROONDAH HOSPITAL today for my chemo session. Whoot! Plus… we were only there for 3.5 hours so we had 30 minutes to spare. I hope we donated those 30 minutes to somebody who needed them. The MOTH sat semi patiently through the chemo session, even though he didn’t have the ‘move the car’ breaks every 2 hours. What a man:)

I should be finished by February 2015.

Whee! February 2015. That’s providing I don’t have any low blood cells and need a break from chemo. I was advised today that I’ve actually got 26 more weeks of chemo to go before I have surgery and radiotherapy as it’s a 7 month chemo program. From this angle that seems like a long haul and I have to admit that it often feels overwhelming. I am usually very active with art projects, work, uni etc but right now it seems I am just concentrating on getting well. It’s pretty boring and self centred but I can’t seem to think outside this little world I’m in. It’s not that I have nothing to do, it’s more that I can’t find any focus. I have a listlessness that is foreign to me. I don’t think the ‘chemo fog’ in my brain helps! Each week I am in a completely different state of mind so perhaps it’s a phase. Hooray for moving to the next phase!

A massive week of shenanigans

Last week was pretty huge. The chemo side effects weren’t too bad, just lots of small things and general tiredness. Of course if you look at what happened during the week it’s any wonder I wasn’t exhausted…

  • I went to Daylesford on the weekend before chemo with my sister
  • My son crawled out unscathed from a 4WD accident where the car had flipped onto it’s roof (see last post) and gave me a heart attack
  • I started chemo!!
  • I kept up my exercise routine as per usual
  • I went to Ballarat overnight with Colin mid week
  • My daughter is going through a tough time right now. Us mothers feel our daughters pain with them.

It’s all happening at the Wood hood. I managed to walk 10+km at Ballarat, run 3.5 km around the athletics track and another 3km on a treadmill plus 3 gym/pilates classes and I’ve been out galavanting, socialising and entertaining visitors as well.

The doctor said today that I am on the highest end of the scale for my ability to exercise during chemo and that it will help to overcome the effects and the efficiency of the drug. That and all my little prayer warriors have certainly done the trick.

They removed one of the 3 anti-nausea drugs I was on because it is playing havoc with my digestive system and it seems I’m not getting nausea. Hooray for that! I came out of chemo today with flying colours and after a little nap I’m ready to tackle the world from my chemo foggy brain. Woo hoo!

Chemo #1 over… 24 weeks to go!

Screenshot 2:04:14 7:54 AMHooray I got through the first chemo session with no adverse reactions so I’m good to go for another 24 weeks! I’ve been randomly selected into the ‘comparative’ group of the clinical trial, which means I’ll be on Paclitaxel (taxol ®)  rather than the new drug Abraxane. Even though I missed out on the Abraxane, the use of Paclitaxel prior to surgery is still a new concept. It’s a highly toxic bomb blast so that ought to do the trick. Unfortunately it is necessary for me to also have cortisone, which wouldn’t have been necessary with the Abraxane drug. Abraxane is also safer, allows higher dosing with shorter infusion duration, and produces higher tumour drug concentration.

No matter! There has been some good success with Abraxane and it’s going to work. I have 16 weekly shots of that and then 8 of the ‘usual’ chemo that everyone else has. THEN surgery and THEN radio therapy. Whew. There’s a long road ahead.

A big thank-you!

I’ve had literally hundreds of emails, Instagram, Facebook, Twitter and blog messages and I’m so grateful to have you all praying and/or cheering me along. It really makes a huge difference and I don’t want you to think I don’t appreciate you if I don’t respond to the comments. Thank God I’ve been feeling calm and balanced with a high level of hope and faith that all will be well but I have you all to thank for much of that.

News flash: The MOTH (Man Of The House) sat for 6 hours

We were at Maroondah for 6 hours and he survived the day without going stir crazy!! Hoorah for the MOTH. He is such a tower of strength right now and I don’t know how I would battle along without him by my side.

The 6 hours wasn’t all waiting so that sounds way more miraculous than it really is. He had the mandatory ‘moving of the car to another 2 hour spot’ and we had several appointments before the actual chemo began. The MOTH also exited very quickly when they put the IV into my arm. Big Brave Fireman. It gave all the nurses and other chemo patients a laugh.

The team at the chemo clinic are lovely and very informative. I was sitting opposite a Swinburne staff member who talked her little head off the whole time. WHAT IS IT WITH SWINBURNE and breast cancer??? There are so many of us with it right now or had it recently it’s ridiculous.  She was on her last treatment so that is great for her and I hope she bounces back from it soon.

So… the MOTH was ‘out talked’ by this person sitting opposite us. Miracle! He found someone who could talk under water more than him LOL.

Toilet cleaning duty

Who would have ever thunk it? The LIST of do’s and don’ts with chemo is scary enough but toilet cleaning? Yeesh. Apparently I have to double flush the loo with the lid down and disinfect the toilet bowl every time I use it so that nobody gets infected by chemo drugs. If I’d known I’d have to clean the loo all day I’D HAVE NEVER AGREED TO IT!!! Yeesh.

As well as that, I am not to:

  • go shopping in crowded shops (almost impossible)
  • go to gym when it’s crowded (almost impossible)
  • go in spas (semi difficult)

I have to:

  • take my temperature every morning and call an ambulance if it goes over 38
  • rinse my mouth with salt water 4 times a day
  • Double bag vomit
  • Stay away from people with bugs (almost impossible)

… the list is a mile long and I’m sure you already know it. I’m sure I’ll figure it all out. Hopefully my white cell count won’t go down too much and I can be my usual wild thing self.

Guess what I woke up to yesterday!

So the drama is all happening in the Wood Hood. I was laying in bed yesterday, my big 1st chemo day, thinking ‘it’s strange that I didn’t hear how the boys went on their 4WD trip’. I opened my iPad and saw this photo!!!

Screenshot 2:04:14 7:54 AM 2

My two sons went on their first 4WD trip with a bunch of mates and their girlfriend and wife. Blake was in the passenger seat of this one. Both he and the driver (who I have known since he was 12 and is a good friend of my 30yo son) got out unscathed. It’s actually very typical of Blake to laugh in the face of danger. He is my super hero. and lands on his feet at the worse possible scenarios of which most of us would never get ourselves into in the first place.

I need some of that right now!!!

Breast cancer post #7

A week feels like a year!

Treatment begins next Tuesday (April Fools day) but it feels like it’s been a year in the waiting. Mostly I’ve been feeling calm with the odd ‘meltdown’. It’s not necessary to always be positive. It’s about balance. It’s OK to have bad days as long as you have more good ones. So the one bad day I had is OK considering it’s been 11 weeks since I found the lump. It’s been a LONG wait for treatment.

This blog is helpful for me as far as explaining to people where I’m at without having to verbally tell me story frequently. I also hope it will be an inspiration to other sufferers and their families some day.

I’ve been asked lots of questions about the treatment and been given lots of helpful advise but sometimes people find it difficult to understand why I’m having chemo 1st and surgery 2nd. Others suggest that I try natural remedies or healing. As I’ll explain here… I only have one chance. So if I don’t take the most aggressive option it’s too late to change my mind. The tumour is large and has invaded breast tissue but I’m very glad that there is no evidence of it invading other places!

I’ve condensed my diagnosis and treatment story to help people to understand why I have chosen to go down the ‘clinical trial path’.

Facts about Triple Negative Breast Cancer (TNBC)

Most people are under the belief that there is only one type of breast cancer. In fact there are many. There are also different grades and different stages. so one treatment cannot be applied to all breast cancer types.

Typical breast cancer types: Seventy to 80% of all breast cancers are positive for estrogene (ER) or progesterone receptors (PgR). In contrast, the (HER2) protein overexpression and/or HER2 gene are overexpressed , in approximately 15–20%. Both of these cancer types respond to targeted treatment (either hormones or Herceptin).

The type I have: The remaining 10–15% of breast cancers is negative for all of the above cancer types. These are defined as triple negative breast cancer (TNBC).3

  • Among all the breast cancer subtypes, TNBC is associated with a worse prognosis. It has a characteristic recurrence pattern with the peak risk of recurrence and the majority of deaths occurring in the first 3 and 5 years after the initial treatment, respectively.
  • TNBC is less likely to be discovered on a mammogram than other types of breast cancer.
  • Anyone can get TNBC. However, it tends to strike younger women, women with BRCA1 mutations, and women of African, Latina, or Caribbean descent. Asian and non-Hispanic white women are less likely to develop TNBC, according to BreastCancer.org.

Read more: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3423721/
http://www.care2.com/greenliving/6-things-to-know-about-triple-negative-breast-cancer-infographic.html#ixzz2xEPTvB2C

 The clinical trial I’ll be taking part in

A small, early study (in 2010) found that 66% of locally advanced, triple-negative breast cancers treated before surgery with a combination of carboplatin (brand name: Paraplatin) and Taxotere (chemical name: docetaxel) had no living cancer cells in the tumour when it was removed.

In this study, 14 women diagnosed with locally advanced, triple-negative breast cancer were neoadjuvantly treated with a combination of two chemotherapy medicines: carboplatin and Taxotere. The women received six courses of the chemotherapy combination before surgery in three-week cycles. All of the women completed the entire chemotherapy course. After chemotherapy, the women had surgery to remove the breast cancer. A pathologist examined the removed tissue to see if there were signs of cancer cell activity.

Nine of the 14 women had a pathologic complete response to the chemotherapy given before surgery. This is notable because pathologic complete response to treatment usually indicates improved survival without the cancer growing.

http://www.breastcancer.org/research-news/20101005-3

The trial I’m taking part in is the phase before it is implemented. There are 600+ women on the trial across the world. United sisters!

 I’m no hero

Participating in a clinical trial feels good as it helps women in the future, but I’m no hero, it’s just that the outlook isn’t great otherwise. Without being a drama queen… this trial is my life line. I’m so blessed to be living in an age where this kind of treatment is possible.

I’m taking an array of supplements (carefully chosen by an qualified specialist) to boost my immunity, energy and kill cancer cells. I’m also on a strict diet plan. No sugar, low fat, plenty of fruit and veges and a good balance of more Omega 3 than Omega 6. It makes me feel like I’m doing something! Who knows if it makes a difference but it feels good to be doing something active.

Roll on Tuesday. I’m getting over it!

I’m going away with one of my three sisters on the weekend to relax in the lap of luxury. YAY!

Breast cancer post #6- One week to chemo!

Screenshot 18:03:14 2:11 PMYou don’t know what to say to me. I don’t know what to say to you. Check mate.  It’s all rather awkward. I’m so blessed to have a sense of humour which I put into action at those silent moments when people struggle to find their words. If they don’t think I’m funny at least I amuse myself.

Yesterday I had the ultimate awkward experience. A guy, who I have met only twice (briefly) totally lost it. I thought he knew I had cancer but soon realised he didn’t. When I told him he became overwrought and took me in his arms and began sobbing into my hair.

It was then I got a whiff of alcohol on his breath.

I attempted to remove him from my personal space but it just didn’t work. My daughter, daughter in law and son’s girlfriend all skulked away (laughing). I was left rubbing his back and telling him it was ok. ‘Have you had a bad experience with cancer?’ I asked? ‘It’s not about ME, it’s about YOU’ he wailed.

OK… so it went on for 5 minutes and I managed to peel myself off him and say ‘it’s time for me to go now’. I walked briskly, with him slung around my shoulders, to where the girls were. The guy was saying ‘You’re poor daughter she must be so upset’ and then hugging and wailing again. I looked up to see  Sophie trying to hide her laughter behind her wallet. The ‘very upset daughter’ and the other 2 girls escaped up the street laughing and left me there. Yeesh. You know who your friends are.

Eventually he told me he loved me and kissed me on the cheek and I bolted up the street like lightening and jumped into the car. It caused hysterical laughter all the way home so it was all worth it… almost.

SO… now I’m equipped to handle any reaction. Bring it on!

Medical news

I had all my tests today and the results will all be analysed and sent to central base. Then my name will be sent to Italy and I will be ‘randomised’ into a group. Then I will be totally random. Yay!

So all going well… I begin chemo next Tuesday, April 1st. Yes April fools day. I’m more than ready for it as it feels like nothing much is happening right now. I’m still feeling calm and positive but have a need to take action as well.

IMG_1513I’ve begun a diet as well as taking supplements which were suggested to me by a pharmacist who went to a conference where the author of ‘Five to thrive’ was speaking. My friend works at the pharmacy and the pharmacist knew about me so she wrote a list especially for me.

So as well as the cancer killing diet, I’m all plumped up with these little babies! It makes me feel like I’m doing something active, other than drinking coffee with friends.

Hairy head

I ‘ve started making hats with matching scarfs out of stretch fabric. I can get a hat and scarf out of 50cm of fabric. Today I cut up an old poncho and made a hat and scarf from it. This will catch on in Paris for sure. My life has been reduced to domestic bliss and hat happiness. I can cook up a mean broccoli sprout in the thermomix.

I’m so blessed to have the chemo in Winter where wearing beanies etc is OK and my head won’t get too hot wearing a wig. I also have some clever family doing some knitting and I can’t wait to see what they come up with.

This morning I went armed with Sophie to the wig shop in Ringwood and bought two synthetic ones from the Rachel Welsh range. The MOTH always fancied Rachel so that might add some spark to the marriage! The wigs are surprisingly realistic and I’m almost looking forward to the low maintenance hairdo.

My art expo

SInce Paul has been so lovely and extended my exhibition dates, please go and check out his new business. Have a lovely coffee and lunch at Forest Edge Stone in Kallista, they have extended my art exhibition until May 1st.  Ignore the ‘April the 10th’ end date on the website: http://www.forestedgestone.com.au/

Breast cancer post #5- bald is beautiful?

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There is no doubt that having breast cancer makes me question what’s important. I’ve always lived life to the fullest, perhaps because both of my parents died young (biological father- 23 and mother- 54). Perhaps it’s just my personality. Having cancer takes my focus a step further however. It is probably a phase I’m going through but I have little interest in the usual life pleasures right now. I’m finding it more important to connect with people. You should see my diary!

Are split ends important? A broken finger nail? Work? Home decorations? Shopping? Well no. I’m sure it’s a temporary state of mind. In saying that, I have to say yes… losing my hair does mean something. Call me vain but I’m not sure that it’s all about vanity.

It’s very confronting to go to a wig shop and try on wigs (which made me look like a supermodel I have to say LOL). It’s even worse to have your hair tucked away and a ‘chemo hat’ planted on your head. I didn’t look like me. I looked like a cancer patient. I know hair isn’t everything it’s just on the outside but it confronted me with my illness in a very powerful way. It’s just as well the lovely lady in the shop was prattling away in my ear and distracting me from the sight.

This week I had my hair chopped to shoulder length. Perhaps I’ll get 1cm cut every day for the next 3 weeks! In the meantime, I’m designing my own hats so watch this space. I’ve never been a hat person (they don’t stay on my head) so that will be a new fashion statement. Sophie and I went looking at hats (and other stuff) last night. I didn’t buy any but tried on a few… You like?

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Breast cancer post #3

Woo hoo! That’s another stage out of the way. I’ll begin with the medical news…

Good news: There are no obvious signs of cancer in other parts of my body. So any cancer cells floating around should be killed off with the chemo. That’s something of a relief for sure! PLUS… I don’t have to have the core biopsy on Friday and that’s pretty awesome too as I’m still bruised from the last one.

So the cancer is grade 3 (fast growing) but it hasn’t spread beyond the breast so we can manage that! It’s doubled in size in 2 months so let’s get that thing shrunken!!

Other news: The cancer has been diagnosed as Triple negative breast cancer which is unusual (of course… I’m destined to be unusual). I meet the criteria for the clinical trial which I’ll be taking part in: Neoadjuvant Chemotherapy With Nab-paclitaxel in Women With HER2-negative High-risk Breast Cancer (ETNA). By doing this I feel I’m contributing to providing better treatment for women in the future and also gaining close monitoring and new medical techniques.

My part in breast cancer research clinical trial: The short description of the trial is that I’ll begin with chemo using 3 types. One of the types is usually used for secondary cancer but they are trialling the use of it for primary breast cancer. Once I have completed 6 months of chemo I’ll go on to surgery and radiation treatment. Hopefully the chemo will shrink the tumour down to nothing or almost nothing and the surgery will not be as significant. I have to have surgery regardless of how small it gets. It will also mean that any cells floating around my body will be killed very soon rather than waiting until after surgery. Death to the cells!!

Click here to read the medical jargon about the trial

Click here to read about Triple Negative breast cancer

Where to from here: Today I’m to read the pages and pages of research clinical trials info and sign it. I’m going back in tomorrow with the signed forms and to get things kick started. Chemo will be at Maroondah hospital, most likely on Tuesdays which is a bit disappointing as I was hoping for LILYDALE but oh well. The car parking at Maroondah will be a small challenge in the scheme of things.

I don’t know when chemo starts but possibly next week. Stand by!

The non medical stuff

Screenshot 18:03:14 2:12 PM

Every day I get a parcel in the mail.

Not from ebay but from various cancer foundations.

  • I got the ugliest bra EVER. But I’m very grateful to have received it.
  • A pilates video
  • A million trillion books and reading material
  • A journal and diary

It’s like Christmas (not!).

My friends and relatives expect great things from Colin

Ever since my last blog post, Colin has a growing list of things to purchase. Camping trailers, overseas trips, guitars etc. He has been putting his small change away especially. One of his work buddies sent me an sms saying that Colin would never buy me a Ferrari so he would buy it. YAY!!! I knew I loved Dave from the moment I met him. Red would be good Dave.

People are so awesome

I’m so humbled and grateful for those around who have been so thoughtful. It’s really very touching to have the practical things and the flowers etc but mostly the kind words and prayer. I am not alone and boy do I know it!

My daughter is awesome

The world of wigs and weird bras is all new but my darling daughter is right onto it. Yesterday she ordered me an eyebrow stencil. I really appreciate her help in these matters but I can’t help finding it funny because I use stencils with my artwork quite often. If I need to draw a circle perfectly, for example, I use a stencil. So I have visions of eyebrows like this one of my drawings, below. If I get right into it I’ll draw in some eyelashes to match. Where does it end? Let’s not think about it.

Anyhow, I’ve booked into a Look Good Feel Better workshop thanks to Ash (sons girlfriend) for her research and Sophie (daughter) can come and take credit for my eyebrows.

Screenshot 18:03:14 2:23 PM

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