Paclitaxel

Just call me Dream Boat.

Screenshot 16:07:2014 5:06 pmLet’s begin with ‘how I am’ because my friends and relatives always check my blog for ‘medical details’ so here tis…

I’m grateful to be having a 3 week break between chemo drugs. I finished the 4 months of Paclitaxel and on July 29th I begin the AC chemo. The Paclitaxel drug has 2 pages of ‘possible side effects’ which mostly I’ve escaped unscathed. I’m  more tired than usual but my blood counts are all normal and I have no numbness or tingling in arms or legs which is common on this drug.

So goodbye to Paclitaxel and hello to AC.

The name AC comes from the initials of the drugs used:

In comparison, AC only has half a page of ‘possible side effects’ but they are more likely to bump the blood counts down. So it’s more likely to compromise my immunity and energy levels and give me nausea. I have my fingers in my ears saying ‘la la la’ to that. Praying for it to fly by effortlessly and to keep my energy and sharp wit going!

I’m still running 5km 3 times a week and trying to do ‘Body Balance’ twice weekly but I have had a very nasty stabbing pain in my upper abdomen for 4 days of this week (and a bit the previous weekend too). I’ve been off my food and not sleeping well because of it. I see my GP tomorrow about it as it’s most likely tied up with the drugs I take for my arthritis. Ho hum. Nanna naps are becoming a little common now but most of the time I don’t actually sleep. I just rest for 30 minutes or so.

10555161_10152298070909506_2005442233_nI saw the surgeon at the breast clinic today and she is booking me in to get the breast lump (if they can find it!!!!) ‘tagged’ next week. A bit annoying given that we have been asking them about it for 3 months now. The tumour can no longer be felt, so in a way I hope there is something found in the ultrasound so that when they do surgery that don’t have to guess where it was. If they find something they will ‘tag’ it so that they can remove the area during surgery. Surgey will be in October sometime.

You can read more about tumour tagging here.

Perhaps they are really microchipping me so I can’t run away from surgery. They know how fast I can run:) Anyhow… that is going to rudely interrupt my ‘Arty’ week away where I was going to eat apples and paint pictures in my pjs next week.  Luckily we can drive back for the surgery and return to Rosebud the same day and it won’t interfere too much!

Here’s a little story from todays visit to the doctors.  The MALE surgeon said to me ‘We need to pop up on the bed so we can look at your breast’. I almost got the giggles but stopped myself. WE???? Really. That would be kind of odd. So glad he didn’t pop up on the bed with me as it’s only 50cm wide.

Dream boat

Here is the truth about my sharp wit. My brain is so scarily foggy that I spend my time worrying I’ve forgotten things. I’ve always had a ridiculously good memory. This week I forgot a lunch date with a friend. ARGHH! If you have any dates with me please remind me the day before. It’s not that I don’t love you dearly, it’s just that I’m so lacking in grey matter right now. That’s why I can’t work. I don’t even remember what my job used to be let alone how to do it ha ha. Just call me Dream Boat.

Gratitude amongst the hard times

I’m grateful for many things.

  • The bonding of relationships with my husband, my family and my friends
  • My artistic gifting
  • The strengthening of my faith
  • My dog
  • Wigs
  • Eyebrow pencils
  • Bed
  • Humour
  • Bra stuffing (for the future)

Most of all I’m grateful for having the following story to share with you.

As you know, a friend named Josie died from Breast Cancer a week ago. Her husband, Kevin, popped in to pick up some artwork from me and stopped for a coffee. Kevin watched his wife struggle for 13 years with secondary breast cancer and shared with us many stories (mostly funny ones). This one really got me thinking though…

13 years ago, Kevin was seriously stressed about his job. He had both medical and emotional conditions which were stress related. He worried continually and had difficulty sleeping etc. When Josie was diagnosed with cancer the stress stopped instantly. He said that almost overnight it completely went away as he focused on what was important to him and prioritised his life. He spent the next 13 years enjoying his marriage and focussing on each other. They focussed on the things in life and what really mattered.

Imagine if we all lived our lives that way. If relationships were the most important things in life and not money. Why do we need these nasty reality checks to know what is important? Divorce rates, work related stress, estranged families and suicides would all decrease. People would take better care of their health. If we stopped prioritising the material things.

Simplistic I know, but it did get me thinking and thinking is pretty hard for me right now so that’s a miracle!

 

 

Goodbye grumpy pants

Grumpy pants from the last post has left the building. Today is ‘feel good Thursday’ so I’m writing this before the chemo kicks in again tomorrow he he. Then you won’t have to listen to the whinging again.

Chemo, coffee and carousel horses

Chemo, coffee and carousel horses

I spent the last chemo session having a chat to my beautiful sister. She got to share my world with the lovely nurses and other BC patients in the ward and time sure went quickly having her to chat to.

Hooray! I still have normal blood!! My white blood cells were 5.2 and red 5 but my sister and I were both a bit vague about the exact number. The nurse said they were all within normal ranges though so that is a good thing after almost 4 months of having it attacked by the DRUG. Thanks so much for all your prayers… it’s working… of course!

I suspect I had a bug last week and that is why I felt so ghastly. Next week I will be half way through the chemo and will begin the ‘big bad AC drug’ in 2 weeks. From my calculations I have my last chemo ON MY BIRTHDAY. I’m not sure if that’s a good thing or not but what a way to celebrate! The surgery will be 2 or 3 weeks afterwards and then 6 weeks of radiotherapy. I suspect there will be a gap after surgery to heal the wound before radiotherapy so I think we will be up to Feb/March before finish time. Now I can start counting the days down to chemo finishes.

On a more sobering note…

It’s all very well for me to be upbeat and enthusiastic after 4 months of treatment but it’s very sobering when you discover your work colleague from Swinburne (one of 12 with BC) is now in palliative care. Josie has had breast cancer for 13 years now and that is a long time for her to keep that spring in her step and gorgeous twinkle in her eye. She is such a sweety and has blessed all who know her. Big hugs to her and her family xxxooo

 

 

 

My head says ‘who cares’?

10412182_10152212273964506_649321099_oI totally understand why people stare at unusual things. Our brains just wants to make sense of things that aren’t the ‘norm’. I manage to go under the radar and blend with the crowd in my wig and my creative eyebrow drawings but I find going to gym is sometimes quite uncomfortable. I usually wear a baseball cap and a little makeup to take the shock away. At any given session I am stared at by 30+ people for that 3 seconds longer than politeness allows. Even my friends stare until the flicker of recognition kicks in. I always respond with a big smile. So far NOBODY (apart from friends) has smiled back. I go to gym 3+ times a week so that’s pretty bad. It’s not the staring that bothers me it’s that NOBODY responds when I smile at them.  I know I look like an alien but aliens can be friendly too.

If I said I was going to shave my head to raise funds for cancer I imagine they would all be cheering and giving me a hearty pat on the back.

Perhaps I need to get over my bad self. Let me just say… if you see someone who looks ‘different’, give them a smile regardless. It may well make their day.

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Chemo news

If I had the choice I would not choose Tuesdays to have chemo. It takes 3-4 days for the side effects to kick in which means I am feeling yuk by the weekend. Monday to Friday I feel pretty great. Then the weekend I am tired and ‘weird’ feeling. It doesn’t stop me running 5k on the athletics track and socialising my little heart out but I have to force myself and take naps. This weekend I had ‘flu like symptoms’ that are common with Paclitaxol. Aching joints and tiredness.

Apparently it’s ‘have a whinge day’ at the Wood Hood. Ha ha

Two more sessions of Paclitaxel to go and then 4 cycles of AC. I’m almost half way through the chemo 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!!!

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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!!!