Hair Today - Gone Today?

That is the question...
I was considering chopping whats left of my locks off 2nite.
For those of you that have seen me - I have been sporting a 'poor boy' beanie due to my hair looking like such a state in the last week. My hair looks like Yolandi Visser...most of you won't know who she is. Google it - it may be the worst hair do you have ever seen! If I had to explain in - it's similar to a mullet gone wrong. With all the chemo over the last 7 months- I lost about 3/4 of my hair and as mentioned in the posts previously it has grown out kind of awkwardley whereas my other hair is super thin and rather much lacking at the back! Now everytime I look in the mirror I feel so saddened - I don't know why. It just gets me down a bit so I think I am going to chop it off before it starts falling out hectically. I want to feel like I am in control. Enough of this 'is it going to fall out or isn't it crap' - It's been going for over 7 months already!
Yesterday I found out about my massive organised fundraiser - I thank you all for the immense (unexpected) support. Everyone has been so amazing and so supportive - when I think about it I just feel so amazingly overwhelmed. When talking to my other half last night I just couldn't explain what I feel with such support - and he certainly couldn't help either. It's just so big! I thank you all for the helping hand. There just arn't words to describe how I feel. I'm still over joyed about the first one really!

The Red Devil

For those of you who are not aware - I started my new treatment last Wednesday. Wow is this a whole nother ball game!!! I hate it :( 

My day started at 9am getting down to the chemo room. I was bombarded by all the friendly faces of nurses who openly greeted me with hugs. It was kind of weird considering I hadn't been here for 2 weeks now.

I was seated now on the other side of the room (seen that trials happens towards the back) and of course lost 'my chair' that all the staff had known was mine. The nurses began to tell me of all the new side effects I would feel with this new drug nicknamed Red Devil.

As soon as they had got me linked to my line I felt this wave of nausea -suddenly I wasn't so excited to start the new treatment.It slowly subsided a bit and got better. The rest of the treatment took about 2 hours (alot quicker than the old treatment).

I went home feeling a bit normal and then it suddenly hit me. Immense nausea and tiredness. I was so nauseas that every time I even thought of food or heard the fridge open I was naar to my stomach. I was staying at my mom because she was off work for 2 weeks. Nobody takes better care of you than good ol mom :) The only downside to this is my mom loves to watch the cooking channels......eeeeew.

3 days later I am slowly starting to feel normal again. Extremely weak with litrally no energy and I'm eating marmite toast/ bland fruit alot more easily now. yay me!

Just gotta take it a day at a time I guess. Really didn't think it would knock it out of me so much.

Ok - so cycle 8 didn't quite start at all...

I had a CT scan last Thursday and when I went the next day for my chemo the doctors put an immediate stop to my treatment. The primary source (in my breast) has grown a bit so it appears my body is growing immune to it all. I was supposed to start the new Red Devil Treatment today but alas - my medical aid hasn't finished authorizing my meds for chemo. Medical Aids in general make my blood boil (grrrrrr). I was supposed to start treatment STAT but apparently Discovery has had a back log and a half of work to authorize. 

I am now stopping stressing for the day/ weekend and going to try enjoy a weekend until the drama starts up again next week  ;) My body/ immune system deserves a bit of a break!
I had a wrap up session with the Trials team this week - I'm so sad to leave them! All the nurses and doctors are absolutely amazing.  It's also a bit stressful having to rely on my medical aid paying for everything - before the trials paid for everything. Just got to hope and pray that it all works out I guess!

Cycle 8 of Chemo

I cannot believe that I am starting cycle 8 of chemo soon. This will be my last month of chemo on the trials department.

I had a meeting with my 2 oncologists on Friday. My doctor will be attending the meeting for the drug she wanted me to be on - to see if the drug will be released to tier 1 medical aid patients sooner than later. If this drug does not get released sooner than we anticipated then I will be put on the mother of all chemos - RED DEVIL. My current chemo that I am on now is a walk in the park comparred to this stuff. So not stoked for that at all but it still excites me that it's a further hope to get better. Bring it on I say!!

I'm finding that I'm growing more and more old lady like as time goes by. I have such intense back pain in the mornings that I struggle to get out of bed at times. 

I am quite excited for our support group this year. I recently got together with the main organiser/ Chair person in CT for Breast Buddies and we have come up with some great ideas to get us out there and make 

the awareness bigger. It may sound funny with me currently still on chemo but I enjoy getting this kind of thing out there. If I can empower people to be aware and help the cause then I am more than happy :)

We are getting some marketing put togetehr such as our own buffs, rubber band bracelets, cool and quirky shirts - I hope it really takes off.

We are going to host such events as quiz evenings, A Mad Hatter Tea party, launching a calendar with fighters and survivors and a Pink Coctail event (which we will do a reveal of the calendar). If anybody has any great contacts for sponsorship/ prizes then please let us know. We need as much help as possible :)

I changed the name of my blog for now - simply because the word hope is popping up so frequent lately. I may even have that word tattood on me instead. To me Hope is inspiration, it's a goal, it's the little thing that we clutch onto no matter how bad a situation can be.

I had a super bad day yesterday - I was really down. I sat down in my doctors office and she broke the news to me that my medical aid does not want to pay for my new treatment because it's new on the market and very expensive - but yet cheaper than the chemo and Herceptin I am currently on in trials. I was so mad it was unbelievable. I am assured that trials will have me for as long as possible (which I am happy about) but it's not the best solution at the moment because I could be growing immune to the chemo.

I ended up in tears in the doctors office - the worst thing about having cancer for me is not knowing the unexpected. You hold onto every shred of hope and positive thought that all will work out and then stuff like this happens....Doctors are trying to negotiate with them but we'll see what happens. There are other options but it still all sucks. Shame - my trial doctor is a complete angel. She sat down beside me, hugged me and completely understood everything I felt then and there. She's been through all the same stuff when she was 22 years old and matched every sentence to what I was thinking.

See - more waiting. I swear medical aids are just around so you can stress and end up with heart faliure or something instead!

Something I have learnt while having the dreaded C is you experience a hell of a lot of waiting. You’re always hanging on the edge of your seat for an answer. This week I am waiting for a final answer on the new plan of action.

It is confirmed that my body seems to be growing immune to the Chemo now so a new plan of action might be rolling about soon – new chemo. Meh.

This all means I will have to come off the trials that I am currently on which means a bigger worry of course when it comes to my measly medical aid. My medical aid at the end of all this might give me heart conditions too just because of worry alone.

So anyways – I had genetic testing done and my doctor called me in to discuss the results. I tested positive for the breast cancer gene of course. It’s very clear that it is hereditary meaning my family needs to have necessary testing done as well as confirming the needs of me having to have the lump removed.

The lump can only be removed when the primary source in my breast goes down because the area is a very difficult area to deal with being just ‘below’ my breast. It is positioned just above my rib with not a lot of skin to use (trust my luck).

This new form of chemo won’t be done through my port this time – instead it will be done orally in pill form together with another drug similar to Herceptin. Unfortunately symptoms are still the same – just no hair loss (yay!).Just as well because the hair that I have lost is sprouting back looking a bit spiky at the top of my head. It reminds me of a grass head that kids grow – looks kind of funny but super grateful that I didn’t lose a whole lot of hair. I think it would have made things a lot more difficult.

Getting a bit fed up of all the weight gain since the treatment. I have put on ±10kgs. I keep telling myself that at least I am eating and it’s not a whole lot of weight loss making me look more ill but can’t help but feel a bit self conscious about it. I tried the healthy eating but it seems like the steroids are winning the battle here instead so I tend to eat whatever I crave still eating healthy when I can.

Guess we’ll have to wait and see what the doctors confirm on Friday…

Positive Feedback

Yesterday I paid a visit to my new oncologist – what an angel…..and certainly someone of a complete

Different nature to the original donkey who gave my diagnosis.

Dr. Rika Pienaar is a extremely well known Oncologist and she specialises in the areas of my cancer. Why

I didn’t find out about her before – I don’t know but I wish I had gone for a second opinion by her.

On close examination she seems to think my main tumor has shrunk quite a bit but it has gone hard however.

This means either A) certain sections of the tumour are not responding to my type of chemo but the rest is responding well or B) When my 2 biopsi’s were done the needle has caused the tissue to go hard. If the answer is A it means I’ll need another kind of chemo to break the bastard down.

The other cards that have been laid on the table (that she would like to do) is remove the problem sources of cancer, Whack me with a short stint of radiation as well as a possible maesectomy (eventually). She seems very certain on the Process plan but I think It will take a while.

On chatting to my cousin shortly after my appointment (her mother sadly struggled a long battle of breast, ovarian and skin cancer) she asked how I felt about having a masectomy because I said it so ‘without worry’. I told her I would Have it done in a heartbeat without even thinking. I’ll do anything to better my chances – absoloutely anything. If my family had gone through genetic testing before all this I would have opted to lob the suckers off if I’d known I was so proane. One can always get new ta tas ;)

I know I have been very positive but the doctor has given me that little extra bit of hope ;)