Busy Appointment Week

Coming back from holidays nice and relaxed and with more dr appointments and tests.

I have been busy seeing the plastic surgeon to work out the final plan for reconstruction. Now I don't think I'm that vain, ok maybe a little in taking pride in my appearance, but I would have just been happy with 2 nicely shaped mounds for my clothes and swimmers to look normal. The cancer is the priority and dealing with that. But it seems the breast surgeon is being dictated to by the plastic surgeon, but she seems onboard.

The plastics guy, Damien, showed me pictures of his handy work. He even creates new nipples, do I want to save my other nipple?, he makes them look exactly the same...etc. so I think I am going to be easily pleased by what this guy does - he's a perfectionist and going the extra mile that I hadn't even considered. So the big question take both nipples, create new ones or save one and create one on the cancer side?? what to do.....

There are some treatment benefits by using his methods and the new order. The public system won't use this method yet but it will be the new normal in the future. It means less operations and no need for temporary spacers while radiotherapy is being administered. Spacers can move, get infected on the wounds etc So radiotherapy starts 1st or 2nd week of December. I was kind of hoping that I would have a break over Christmas but it's every day for 6 weeks, but at least I'll be finished with it all sooner.

Normal order: mastectomy insert spacers, radio, reconstruction 1, recon 2
My order: radio, mastectomy/recon at same time (no spacers), recon 2

2 recon ops because they need to flip me over back and forth for my bum and breast recon at the same time. It's too long an operation to do both. I wonder if I'll wake with more bruises than normal.

We also met with Michael chao, the radiology oncologist. I liked him a lot. Although the way he was supporting Damien I started to wonder if it was a bit of a Boys Club. He went through the historical events with us, explained my initial mammogram and ultrasounds and the BIG question that all of the professionals ask me:

'If you have no cancer family history, no lumps or symptoms, you are under 50, what made you go for a mammogram? Was a dr keeping an eye things?' I reply, 'no just started listening to my body and some friends who were impacted'. It was a God Wink and I caught it - what can I say...I am very lucky. A bees fart away from secondary cancer.


A side effect of radiotherapy is it can give you breast cancer!!! Go figure! So the benefit of having surgery after radio is they remove all of the tissue when it's finished, so that risk is taken away. He also gave me his recurrence possibility stat, being 30% without radiotherapy, 10% with radiotherapy. I think this is a good stat and benchmark to be.

I'm off to have my bum ct scanned for good blood vessels for my bum boobs. Then we'll know what angle will be removed on my buttocks.....hah for my bum lift!!!! For someone who would have never considered plastic surgery, I will have had 3 procedures by the end of this.

Another MRI scheduled to see how the docetaxel is working on FF and his friends.

Chemo went well yesterday with my meditation cd, I didn't feel the cannula or needle go into my arm at all. Either that or the skill of the nurse. But I was relaxed. Mum, love her, fed me as I had my boxing gloves on and couldn't do much. John went to work to make up some time. So chemo will hit me Sunday night I presume, then 4-5 days down and back to work Friday. I'm reducing the steroids (dex) to try and reduce my fluidy fat and blistered face (it's not supposed to do that dex is supposed to reduce side effects including fluid retention!) Anyway, I'll give it a go and increase it back if I need to they said. Luckily, Johns photoshop skills meant he could slim down my face in our family portraits we ordered. He gave it back to the photographer to process for our big family portrait for the wall. (Yes ok maybe I am a little vain)..

1 more chemo and 4 weeks to go. Then part 2 of my journey.

Today I asked Andres did he want to see my hair growing but "nah Mum not if its' boy hair - only if it's girls hair". It has to be longer than his hair for me to take off my wig and show him :)

nice surprises

Making a decision to have family photo's done with a wig on my head and a puffy face from chemo was a bit daunting! But the timing was now as the school had a fundraiser to have a family portrait session and given that photographer John rarely features in our family snaps - it had to be done.

 

 

Well it's a place in time, it's not like we will forget it easily, so maybe it will be a momento hanging on our wall of 'when the going gets tough.....' And remind us how we can overcome things as a family.

Surprisingly, we had a lot of fun doing it as a family and we forgot about stuff. 

Even more surprisingly, when we got home we received a call from the photographer saying that they needed to refund us as the school community had donated a complimentary package to us with a special card with best wishes. I was so overwhelmed I had to stop the lady because I couldn't take in any more information she was giving me. 

We are so grateful for the lovely gesture and when this disease isolates and makes everyone feel uncomfortable it's things like this that bridge that gap of humanness.

Holidays!!!

Holidays!!!!!

Yay finally on our holiday on the plane writing this. It was the first stress free travel with kids we've ever had. Probably bring packed 2 days before and of course John's packing database has made a huge difference....

A closer substitute for our cancelled Disneyworld and the U.S but what we can manage given my 3 weekly treatment plan. I craved for some warmth and family time so Port Douglas it is ......30 degrees everyday and sunshine!!!!! 

We had a great time relaxing by the pool, not thinking about treatment plans, side effects and outcomes. It was on my bucket list to take the kids snorkeling on the reef (a bucket list I wrote before I was diagnosed). So we went snorkeling on the Great Barrier Reef searching out Nemo, no cooking, lots of seafood and reading. We saw crocodiles on a river paddle steamer cruise, Andres was very excited he got to skipper the boat, and so did Alexander.

So we didn't see a lot of the sites, the Daintree, Mossman Gorge etc
were all there to be experienced but an excuse to come back when we are more energetic. 

Managing the wig and my baldness worked out okay in the end. No one looked at me weird. I bought a chemo cap from Canada the is like a funky UV swimming cap with little ties that hang down the back. A mum actually invented it to protect her boys heads from melanoma when they are at the beach. They breath and dry and come in lots of funky coloured and designs. It's a great resource I'm not sure many people know about them. Www.nimmo.com. Anyway I wore a scarf and my hat the rest of the time.

Now we are back to specialist appointments and tests and chemotherapy again. 2 more to go of my healing chair and 4 weeks in time terms.

Plastic Surgery and the order of things

Plastic Surgery Planning

Yesterday was day 7 since chemo and the first day I felt 99% well. Yay - although this was a longer recovery for some reason. My body felt better at day 4 but my razor blade mouth, tongue and gums, eye watering, nose drying and a new one - red flushing rash on my face. Yay - that goes well with my hot flushes of enforced menopause But the best thing.....I don't need to use blush anymore!!! So when you have 1 problem, it's fixed by something else yet to come !!! Ha, ha. Chemo makes your skin go a bit yellow so I've been using more blush than normal, until now. :p

After the appointment with the public hospital plastic surgeon, waiting 2 hours and being bumped to a different dr's list, I started to feel nervous about public. Then when meeting with the plastic surgeon, I got the feeling they wouldn't look at anything outside the way they have always done it and the new technologies available were not yet allowed in the public system.

In the meantime, after seeing Damien grinsell, a plastic surgeon privately, he had taken the initiative and contacted my breast surgeon for a discussion and had written a detailed report to my GP. Even though I hadn't decided to go with him yet and had a tentative 2nd appointment booked, by the time I got to see my breast surgeon privately, she was okay with everything that he was proposing, even though the order of things will be changed on his request. 

I was stressed about asking her about changing up the order, whether she could work with him, can they work in the same hospital etc.,. But it was all taken away, when she opened with that she had spoken to him and she is happy to work with him and even suggested if I'm happy not to keep looking as he is one of the best. He teaches in internationally and has championed this method here in Australia. So everything fell into place and we are going with the private system and I will be wearing our trip to America on my chest!!!! Ouch...$$$$$ or Alexander's 1st year of high school tuition fees and then some....😯

My priority was just to get the cancer out of my body, but then you also want to look as normal as possible under clothes. And then your next consideration is minimal surgeries, best up-to-the-minute methods being used to minimize management impact on your life long term. Then there's implants versus autologous (my own skin/muscle) which all going well, will require no future maintenance like implants do. I just want minimal surgeries and get it finished with an end date. Albeit, a major surgery with a longer recovery, but then it's all over!

So the Order of things has been changed as Public won't do radiotherapy on an intact cancer ridden breast it must be removed first, so this is a new technique where everyone is in agreement that it won't make any difference to getting the cancer cells and Damien has performed 31 of these so far with good results. I guess it's a bit like me having had chemo first (neoadjuvent) before mastectomy which is a new technique so they can see how chemo effects the tumours. Otherwise they are only guessing by taking it off first and its an insurance policy of chemo after mastectomy as they don't know the impact of chemo. New order:

- radiotherapy, December/January??

- surgery February 2016

It sounds like this will speed up everything and surgery will be done all at once rather than a 2 stage process. Well I'm just guessing, so a meeting next Tuesday with Damien Grinsell will confirm everything and book it all in. 

Anyway until Tuesday, I'll know more....

Wednesday 14th October

Today is day 5 past my chemo day in the 'healing chair' having received my healing elixir! Positive attitude meditation is helping heaps. A cd to help you through treatment through visualization and relaxation at the time, before and afterwards. I didn't even feel the needle and cannula being inserted, so it was either the skill of the nurse or a bit of both. Here is me with my ice gloves on!!!! Brrrrr!! I needed the meditation to cope with my frozen fingernails. 

Last time, this day I was back at the hospital desperate for something for the pain, but I have been keeping up a base line of Panadol and it's worked!!!! I only have a bit of pain but I am managing it well. 

Mum and I went for a walk today to enjoy the beautiful weather. Yesterday I sat in the sun enjoying my new day bed that John bought me while Elizabeth (yes my cleaner!!!) cleaned my dirty house!!!  Life is blissful and everything is right. While sitting there I created and coloured in my treatment plan in a visual drawing. I'll colour in the tumours and treatments as they are completed. 

So sitting in the waiting room at The V, waiting for the plastic surgeon. I've already seen one guy privately  who thought he was 'one of the best', I'm sure he is!!  So this is the public guy so I'll have something to compare it all with. Still to decide public vs private. Very confusing - except for the dollars, that's unmistakable.  Plastics only work with some breast surgeons and plastics only work out of some hospitals but not others. 

There's so many different methods to choose from - depending on how much surgery you are up for. So far I'm thinking I might have bum boobs!!!! A buttock lift at the same time - by default. So they'll use my buttock muscle inside my boobs instead of silicone implants. At least it will grow and change with you like they normally would. 

Oh well - we'll see what he says. 

My Bald Head

So I'm checking my head on a daily basis for some hair growth. Depending on the light I think I've grown some, and then the next day - hmmmm.... not so much.

Tuesday this week, I received a call from the Breast Surgeon, Christina Foley.  She confirmed the MRI results again as our meeting with her didnt go so well and we didnt seem to get all of the information.

She did confirm that my lymph nodes are normal again!!!!  This is the most important information she should have told us, but neither John or I can remember her saying it. It was only a passing comment by the fill-in oncologist, so I wanted to hear it from my breast surgeon first hand before I got too excited.

It is so important because it means that the cancer cannot spread into my body any further, it is contained within the breast!!!  The lymph node is connected to the blood circulatory system. The MRI shows no cancer in them anymore, my 2 nodes show normal tissue.  Chemo has worked!!! She said that this is one of the best results they've seen. She did incorrectly tell me that 2 tumours had disappeared, there is actually only 1 has disappeared. I'm not that disappointed considering that my lymphs are clear.

It means that I can mentally re-stage myself from stage 3 back to Stage 1 - even though they wont do that. They will continue to treat me as per my original diagnosis, but it is a huge mental weight removed from my thoughts.

I did promise you a bald photo........he, he.. I even look that chubby in the face straight after chemo and the neutrophil injection that poor John has to give me.

Bald Photo of me I promised

Appointment with the plastic surgeon on Tuesday. So the plan is for a 2 staged mastectomy.

WARNING - TMI What this means is I will have 1 boob done in January using a skin sparing technique.  This means they just empty out the mammary contents but keep the pouch of skin and fill it with a saline bag. Kind of like an immediate reconstruction but not the final result. The reason they do that is so it saves my skin rather than cut it all off. The saline bag is used rather than a proper reconstruction because I have to have radiotherapy everyday for 6 weeks on the chest and armpit and it doesnt go through silicone and it would shrink the skin slightly and damage the reconstruction.

Then when that's done, the final part of my journey is the second surgery, where they will remove my other breast contents and either use some tissue from somewhere else on my body or use silicone implants and get both breasts even and complete their final look.  Those options will be discussed at the meeting on Tuesday.

I found an interesting article on fibrocystic condition (lumpy breast). It explains how these lumps can mask cancer or and further investigation can be dismissed to menstrual conditions. The article explains how they can turn from benign to cancer. Anyone with lumpy breasts, in my opinion should have an ultrasound as a double check. I believe that this is how I developed breast cancer.

http://www.medicinenet.com/fibrocystic_breast_condition/article.htm