MRI Results

 MRI results and surgeon appointment

So today I spent the morning at the Look Good Feel Better program for cancer patients, learning how to draw on my eyebrows as they start to thin out.  It is a program that helps cancer patients feel better by demonstrating head wear, including wigs and learning how to apply makeup properly. The best part is bringing home a sample bag of the products we used.

Thanks Heidi for accompanying me to this program. We saw some Wayne's World, Joan Jetts and Friar Tuck hairpieces that you wear under hats without it being too hot. Everyone decided Friar Tuck was too risky.  There was discussion about hair they supply for EVERY part of the body!!!!!! When hair removal goes too far, they can provide a 'prosthesis' if you get my drift....why would you??!!!! Anyway it provided some good laughs.

Then, this afternoon, I had my appointment with the surgeon, which is difficult to absorb. 

Overall, the MRI results are good and she clapped her hands which was the main point of the appointment. Out of the 6 tumours, 2 are no longer visible when compared with the previous MRI. The other 4 have shrunk to half their size and there is no further spread in the lymph nodes, just in the 2 that we knew about. So a good result.

Halfway MRI Results - Fat F&*K and  his friends shrinking

It's when we started asking about grade of cancer, likelihood of recurrence, likelihood of spread to the other breast that it got a little scary and contradictory. Basically, my doctor started contradicting some of her statements but it is all dependent on what angles you are coming from.  Cancer is so complex. While I have tiny to average size tumours, the spread (invasiveness) of the cancer and the fact it is in my lymph nodes makes it high risk category at stage 3 and High Grade (low, intermediary, high Grade). But there are 3 levels of stage 3 (A-C) before getting to stage 4 - the worst and highest stage. I suspect it is stage 3A (maybe 2B) from what I've read. (My doc only told me stage 3).

They come up with this status after looking at the 3 different oestrogen and progesteron receptors of the cancer (how fast it grows, whether its fed by hormones etc).  Then they look at the size of the tumours, the spread and if its Node positive (in the lymph nodes).  And lastly, Stage 4 if it has spread to other distant organs.

My recurrence risk has not yet been determined and they use my original diagnosis data, not where it is now to determine it. By plugging that data into a database of previous cases they determine your survival rate. Obviously this hasn't been done earlier as I think she wants us to remain positive.

It is important to come away with only the positives of what we know and not look into the possibilities.  She said that they are still working for a cure, and that the results are going in the right direction - that is the main things to focus on.

The next appointment is with the plastic surgeon. Surgery will be in January depending on waiting lists etc. But I have a private referral for a plastic surgeon from my GP, who has just passed the 5 year mark after her breast cancer treatment.  There will be a lot more to consider with that part of the journey, which to this point I have avoided looking at or reading anything about it.

Next chemotherapy is scheduled for Friday, I wonder what Taxel brings me in side effects? 

Thanks again for all your support and encouragement :) 

4th September

Wow - so that was a ride! So finally feeling more normal now - 7 days post chemo.  I was really sick on day 3 this time, hopefully I'll have lesser side effects with the new regime. 

Tuesday is MRI staging so looking forward to that and visualizing a no tumours left result!!! Although I won't have the results until the following Tuesday 15 with the breast surgeon.

I read the other day about an author who had written a book about coincidence and that its God sending a message - his book is 'God Winks'. I don't know if you believe in God but it's worth a thought about coincidental circumstances that make you change direction or effect a course of action, each 'message' - a God wink. But.......you have to be listening!!!!!

Before my diagnosis, 

- I had decided to get fitter and healthier and concentrate on what and who was important in life. 

- John had lost an elderly aunt that we had meant to visit in Werribee, but never made the time on a weekend and then it was too late, she passed away quietly one morning.

- I was dragging my friend Heidi off to mole screen to check our moles from the bad habits of our sun tanning childhood, and get them recorded and raise our awareness

- I was getting back in touch with people that mattered rather than making excuses about how busy life is. 

- I went for my mammogram after 2 friends were diagnosed and a 3rd told me her mum's story

I was making some positive changes in my life, like a mid life crisis, And then wammo - I got my diagnosis, which I would never have known about if I hadn't been focussing on my health and it would have been too late to be classified as 'early'.

It still surprises me, that women I talk to still have not had a mammogram.  I wonder if I take my wig off and show them my bald head, or hear the fears of my children, or watch when I lay in bed at night wondering if they've missed something in my body scans....would they think it's worth the inconvenience of a 15 minutes of bearing your chest to a stranger to photograph once every 2 years? 

A mammogram should be treated the same as a Pap smear for every women over 40, the timing of them booked together every 2 years and yearly if you have something of interest. Getting it early has better outcomes/prognosis. As my gynecologist said to me when the breast starts to change after 40, each change can be picked up with the historical scans and it is the best defense - so why wouldn't you???!!!!! I wish I had gone back 6 months earlier at 2 years.

Being there for your kids should be at least 1 motivation to get it done. 

Anyway, off my soapbox now.

Friday 18th is booked for my chemo - new drug, new side effects, hopefully my hair can start to recover and no more dizziness after administering chemo......OR on Tuesday 15th appointment with my surgeon, the results of my scan suggest that we stop chemo and start the surgery journey?????  All will be revealed - so cross your fingers and toes with me on Tuesday that fat f$&k and his friends are GONE!!!!

Tuesday is also an appointment with the Look Good Feel Better program where I get a makeup goodie bag and learn how to draw on my eyebrows now that they've thinned out somewhat. Hopefully they don't fall out completely :(

#4 Done and Dusted

Yay! Goodbye cyclophosphamide and Docerubicin!

Today my neutrophils and white blood counts were back to normal range....this was good news so I could get the final of these drugs over with. I think I am getting used to them though because the fact that I can type and read my iPad means my head isn't as bad as last time. I hope I haven't celebrated too early.

Chemotherapy was uneventful except that there was a risk that they wouldn't let me go ahead again. Oh and I had an appointment with the awful oncologist - but Diana at reception at the cancer centre, saw my face and asked if there was a problem. She said she could change me "as I'm more comfortable with a female oncologist" 😉 "yes, yes please". So I get moved to the doctor I had last time and thank her profusely.

The last of the 2 👿 drugs!!!

Part of my support crew, my Mum 💕

The other part of my support crew, hubby John. Fed me ice-cream 😙

I brought home a goodie bag with an injection to give myself to prevent my neutrophils from plummeting so far this time......now that activity will be interesting. The other is some new drugs to take before the new chemo drug #5 to reduce side effects - doubling the steroid dose and effecting my bones by Stimulating bone marrow as this one also reduces neutrophils and white blood cells. 

We have a busy weekend, so have to put my 'big girl panties' on and get out there with a smile on my face and a bag of nibbles and bottle of water.  Starting with Miss Jana's gymnastics competition at 8:15 am, for which she practices day in and day out on our dining room floor. When sitting quietly on the couch, a pair of feet smashes over the cushion scarily close to your head as she does a 'bend over' or 'back hip circle' ??? - I should learn her manouvre names better.

The kids are good, home life is back to normal, I'm still yelling at them to get ready in the mornings. It's still nice that Andres climbs into bed with us sometimes to chat. He loves drawing air pictures to explain things to me. When I wear only a scarf around the house and rest my wig and scalp for a bit, it seems to effect the kids a little. Last time, we were having a cuddle in bed, Andres said "I can't wait for the cancer to be gone, so you won't die Mum".....what do you say to that. "yes that will be a good day won't it" and gave him a hug. The night before it was Alexander who came and sat with me and said he can't wait for the treatment to end and fir IT to go away.

Halfway Mark

Well today was a bit disappointing.

I received a call at 7:30 am telling me my white blood cells and neutrophils were too low to proceed with chemotherapy today!!!!!  Noooooooo........I was looking forward to getting this one over and done with!  (No wonder I've been so tired though).

Well that doesn't fit within my schedule!  I have appointments for work booked on my return, Mum has flown down for the exact time between chemo and when I start feeling well again plus I dont want the cycles messed up because we've booked a quick trip to Port Douglas in October. Luckily, I booked it for the second week I'm well, leaving 1 week's leeway for this circumstance.  After having cancelled our trip overseas I'm not sure that our travel insurance will be so helpful a second time with an existing condition.

Anyway I convinced them to reschedule to Friday, all going well instead of a week away.  It means 'The V' have to do a little more juggling than normal - oh well, if I'm going to be inconvenienced by the C then it can be on my terms!! (a bit of tough talk there :) )

I have been sent my appointment letters for my MRI and the Breast Surgeon in September. This will tell us how the Chemo is working on the tumours (Fat F*&^ and his friends). They are hoping that some have gone altogether or at least reduced but the softening of the density of the breasts is a good sign.

It will also provide information as to whether the schedule will change to surgery then more chemo or stick with the current plan of the second chemo drug cycle then surgery.

Now just waiting for Friday!

Dodgy day

Sunday (4 days on)

Today is always 'weird' day. Everything dodgy seems to happen 4/5 days after. My mouth is strange and thick, nothing seems to get rid of the taste. Food and drink is very unenticing. No energy to share either and watching tv seems the only option but the noise becomes annoying. So what to do - sleep, listen. I realized I forgot to get my e-reader organized before today, but not sure that would be successful either.

Mum is here to help, God bless her cotton socks! and has washed every piece of fabric, and sock in the house possible, I've never seen my laundry so clear for a long time. So she finally is sitting and reading the paper.  Mum arrived the night before my appointment at 'The V' and came and sat through the duration with John by my side. It was a long day starting at 9 am and finishing at 2:30 pm before going home to bed for a nap. 

I came home to some special surprises on my doorstep and a delivery of a homemade dinner, which all put a smile on my face to go to sleep with. Thank you all so much for your thoughts and kind gestures. 

Charlie, the cat has been particularly clingy - not sure if he is being more intuitive than normal or if he's just looking for a warm body to cuddle up to with this cold Melbourne weather?????? Hmmmm...either he really cares or he's just a user!   Getting lots more cuddles from Alexander, Andres gives 'side' cuddles so he doesn't 'hurt' me. 

Of course you never stop being a Mum. So regardless of how I feel, I've still got to make sure they've got the right uniform for the day, if they have fruit and some 'verbal encouragement' to get ready in the morning.

Sleeping a lot more this time. I hope that these symptoms will go away with the new drug for number 5 dose.  I have 1 more to the half way mark! Gotta be excited about that.

Looking forward to feeling 'normal' again.....any day now!!! :)

1 day to go for 3 of 8 treatment

So I am enjoying my last day of good health before they make me sick again :(

John took to my head with the shaver again, so we got a bit closer to the scalp on the hair that is left.  It hurts if it's too long and sticks in to whatever you are wearing on your head like a prickle! So he too was very brave and sheered me like a sheep. I forgot to mention that I look like George Calombaris with no hair!!! Lucky I like his cooking.

The past 3 weeks of shaved head and wig wearing does come with some benefits.....

1. it takes me 5 seconds to do my hair in the morning, I just pop it into position and brush it a bit
2. no more hair stuck in the shower drain
3. you dont have to move your hair off your face when putting your makeup on or brushing your teeth - there's no hair
4. I have more things in common for conversation with my friends' bald husbands......"so how often do you shave?  what size blade do you use? what kind of shampoo and conditioner do you use?" LOL
5. I can try new hairstyles, both in wigs and growing back into different styles (I would never have cut it this short normally!!!!)

Still, windy days always make me nervous.....you can see the edge of the wig when it blows off your face in the wind.  It hasnt blown off completely like I thought it would, so that's a good thing!!

I went wigless in public for the first time, at the snow.  I had beanies upon head caps so there was no need to. I looked like everyone else on the Mountain.

With treatment no. 3 tomorrow, I decided to mentally say goodbye to my little troublemaker tumours.

So I drew them out based on the measurements provided from the MRI, so I could get a good visual on the 6 little b#$%ards!

Here they are against a 5c piece (the biggest ones are considered average in size, not big, not small). With cancer it is more about what they are made of and how slow growing they are. Fortunately for me they are oestrogen receptive and slow growing:

I think I will give them all their own names....but not ones that I could publish on this blog! :)

Thanks Kumar for the cartoon inspiration  ;) 

Hair Be Gone!

Be Gone my friends

So Saturday morning my hair, forward of my ears fell out!!! 

Faced with taking my mullet out into the public, it was time to do the inevitable. Thank you Heidi for shaving it for me - it was done with a lot of laughter, beautiful sunset and yummy treats - but the wine will have to wait!  I think I was numb realising I had to be compliant and follow the rules of these chemotherapy side effects. I'm not much of a rule follower, I would rather poke holes in the rules to test for their usefulness, than comply. 

Sunset Shave

Some weeks ago, out with a friend, we were discussing the practical problems of wearing a wig in windy Melbourne in winter. What happens if it blows off or the kids grab me too hard and take my hair with them? or I have to chase it down the street in the wind like chasing a pet who's seen a promise of freedom! LOL.

Then came the topic of fake eyebrows. When with the girls at the wig shop, I asked about them as they sold them there. He recommended against them. He said they look like bad caterpillars!!!!!

Then that lead to what if it's raining and the adhesive moistens and you walk into a shop with half an eyebrow hanging off your head and worse still, you try and stick it back on in haste and end up with a monobrow!!!!! Ahh... these things I know nothing about - yet! 

On the subject of beanies and caps, how do they stay on a bald head? Do you use double sided tape to keep it from rising up and falling off? Wouldn't it just slip off with no friction to hold it? Then I thought from a practical point of view, Velcro could work, you could stick on the friction side to your head and the knit would attach to it.....right?! 

Okay, I get a bit delusional in my silliness to deal with these new problems to solve. We were crying with laughter contemplating my new first, or second world problems.

So here is my new hair (it feels like you are wearing a cap under your hair - weird!!!).

New Hair

So chemo no. 2 is done and dusted! 6 to go, but only 2 to go for this hairloss drug combination. Hopefully, my hair will start to recover after August. I have 2 chemo days in August due to the longer month.

Scans booked for September to check the effect of chemo - looking forward to that is both nerve racking and a relief to get to a milestone.