hair loss

Squeaky bits

Thank God for wigs

Thank God for wigs!

The MOTH told me that if he bought a boat he would name it after me: ‘Gone with the wind’. I’m not sure which part of me he was referring to but I think he meant the departure of ‘leftie’.

Speaking of ‘gone with the wind’, my hair is refusing to grow back. The first two types of chemo I had it started growing back prolifically after 4 weeks. Now 6 weeks after Carboplatin and Taxotere my hair is STILL FALLING OUT! Well I did the stupid thing and checked Google. There is a group of angry women out there who were not told that Taxotere can cause permanent hair loss. Some people found it was very slow and took years to get a light crop of hair. Others have permanent hair loss.

Screenshot 29:12:2014 4:05 pmOf course, life is more important than hair but sometimes it doesn’t help women to re-gain their self esteem and get back to normality. The hair I have left has gone white and like cotton wool. It’s sparse and like I said, still falling out.

I REFUSE to believe that my hair won’t grow back. It’s usually like a blackberry bush. Strong and prolific. I’m hitting it with $140 worth of Nioxin hair booster which I put on in the shower. Then when I rinse it off it washes all over me so I hope I don’t end up like a gorilla!

Squeaky bits

Since my tissue expander is now dislodged and no longer attached to my muscles I can move it around. OK. Don’t think about that too much. The weird thing now is that It SQUEAKS!

My dear friend Gail gave me a loving big hug yesterday and I got the giggles because it squeaked.  I had to demonstrate it to her to explain why I was laughing. She is very impressed. I think she wants one too.

Sigh. How am supposed to soar like an eagle?

Radiotherapy starts tomorrow at 3.30pm. I hope my bits don’t squeak. It would almost be as embarrassing as last week when I went there and discovered the glitter from my Christmas table cloth had fallen into my bra. The radiotherapy guy didn’t mention it and so neither did I.

Whoever thought cancer could be so amusing?

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The hairy nose enterprise

Hooray I’ve finished cycle 3 of the Paclitaxel chemo. One more cycle (4 weeks) to go and I switch to the AC chemo for another 4 rounds. Everyone tells me that will knock me around more but I have my fingers in my ears. La la la.
So far no nausea and other than two tooth fillings (one root canal) done without anaesthetic, I’ve been feeling pretty good. I have the odd Nanna nap, although now that I have a new bed I’m getting a much better night sleep. Boo to the latex one!

Food tastes weird for a couple of nights after chemo. Everything I eat on chemo night puts me off it forever. I will never face Taco Bill or Parmas again.

I’ve got the chemo routine down pat now. Each week I manage to get the canula put in my left arm so that I can draw pictures. The veins in my right one are much better and the nurses look at them longingly. I’m pushing my luck as far as I can.  Here’s a picture of my routine. It’s enough to make you jealous isn’t it? You can’t see my Kindle but that’s my standby when I’m not chatting to the lovely people in the turban factory.

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I’m off to spend a week in a timeshare resort with the MOTH, given that I have next week ‘off’ chemo. It’s right next to a golf course so I can’t imagine what he will do with his time. As well as that, we are planning a trip OS next year and that is giving me a good goal to head towards. The MOTH and I plan to do an unguided trip to Europe (again) and meet up with a group of our good friends in Tuscany, Italy for a week. It’s such an exciting thought I can’t wait.

Being the creative soul that I am, I’ve made an invention. Having no nose hairs in my nostrils means that they run without warning at 1000kph. As well as this, I have no filter for bugs or pollens which I have always been sensitive to. So I’ve invented a nostril wig for chemo patients. I might cut up one of my wigs and create little mini ones. Do you think it will take off?

I pinched this illustration from my children's book... 'Maggie Magee and the giant sneeze'

I pinched this illustration from my children’s book… ‘Maggie Magee and the giant sneeze’

On a final note… One of Colin’s work crew wrapped up a “Ferrari’ (in Christmas wrapping paper) for me because he said Colin would never buy me one. If you read my first couple of blog posts, written when I was first diagnosed with breast cancer that will make sense. Actually it’s a yellow Lamborghini but who’s complaining?

Good thanks!

10347187_10152183012219506_1541027296625629266_nWhen people ask me how I am I say ‘good thanks’. That’s the standard Aussie response but what I mean by ‘good’ is… ‘all things considered… I’m good’. If I wasn’t on chemo and was asked the same question maybe I’d say ‘not so good’. I don’t usually launch into details because there are people around me suffering far more from various illnesses. Besides, I am feeling good emotionally and that’s a significant thing. In 2 months time I change chemo drugs to ‘AC’ and this could reduce my blood count dramatically. I will have 12 weeks of it, so I’m preparing my body to be fit and healthy by eating right and exercising regularly! At present, my blood count is still normal and the tumour has shrunk to the size and width of a long grain of rice so thank God for that!

Here is my pity party list for those who want to know what ‘good’ means…

  • I can’t sleep due to insomnia and night sweats which are every 30 minutes. This is due to ‘THE PAUSE’ not the chemo, now that I’m off HRT. 3 months ago I slept like a log. Here I am now, writing this blog post at 4am. Boo!

 

  • My brain is really struggling with ‘chemo fog’ as well as ‘THE PAUSE’ causing brain malfunction. It exhausts me to make every day decisions. Cooking tea is a major drain on the grey matter. I’m so glad I’ve made my life uncomplicated! Being self employed means no sick leave and my job requires lots of brain power because eLearning projects have strict deadlines and can be very complex. The threat of litigation looms over my head if projects are not completed to an agreed standard. So work is out of the question. Boo!

 

  • My sinuses are picking up allergies and causing problems due to the thinning of the skin (everywhere) and the hairless nostrils. Bleeding and congestion issues have been mostly resolved by putting vitamin E inside the nostrils each night. I know that’s TMI but some of my readers have cancer and details can be helpful!

 

  • Although I have no nausea, my food tastes weird. I have to ask people if my cooking is funky because it sure tastes that way.

So overall, that’s not too bad is it? As I say… I’m good!

 Balancing acts

10377159_789271297763330_542149322412441886_nLife is fairly self indulgent right now. I have ‘rest time’ blocked in most days so that I don’t over do it. I am not putting my hand up for things which I know will create stress. What? Not doing 1000 things at once? No study, art, work and play? Usually that’s what I thrive on. SometimesI feel listless without the challenge factor, but mostly I’m happy in my little foggy world. I’m so glad I have my art and it’s been selling quite well so that helps pay for materials. My social calendar keeps me pretty busy and I don’t have to use my brain too much for that:)

I’m managing to keep myself healthy and to maintain my fitness level. On Sunday I’m off to run the MS 5k fun run with my dear friend who has had MS for 21 years.

I’m not being a hero, I am a fighter by nature. I am also contrary, independent and stubborn, which is the flip side of being a fighter. The MOTH will verify this without thinking about it for more than 3.5 seconds.  I know that all cancer patients deal with their illness differently, there are 100s of different chemotherapy drugs which have various side effects and also different types of cancer and different types of breast cancer as well. I would hate to think people felt inadequate or compared themselves to my story. My story is my own and I recognize that we all tick differently and our bodys respond differently. My first response to anything is to fight. Not necessarily the right response!

To begin with, I was already physically fit (for a 53yo female) and ate a healthy diet. I don’t drink alcohol very often and I don’t smoke. I also boosted myself up with supplements prior to beginning chemo. So my starting point was high therefore I’ve managed to maintain good health up to now. If my starting point was low, no doubt I would be struggling a bit more than I am. I’ve found it important to know my limits and listen to my body!

Loving my 3 sisters

The sisters

Last weekend I escaped to Sorrento with my 3 sisters for our first time away together ever. It was an amazing weekend and I loved having time to just chat, laugh, soak in the hot springs, eat and shop with them.   Getting there was a challenge. Firstly one sister had an abscess which resulted in surgery to have a molar removed the day before we went away. With a mouth full of stitches and in pain, she soldiered on!  One of my other sisters had a chest cold but wasn’t infectious. As well as that, I broke a molar off on the Wednesday and had it filled the day after, which is a bit of a big deal when you’re on chemo. Hooray for them and the tough genes! It was a miracle we made it but it was definitely worth it.

Embracing the bald

Day 1 of my bald badness

Day 1 of my bald badness

I’m taking a photo a day of  my lovely bald head in different hats, wigs and so forth, of which I seem to have in abundance. Many of them are costumes I’ve scavenged from around the house. I might make a fast paced movie at some stage. Why? Because I want people to know that losing your ‘vices’ isn’t so bad. Hair loss is a fear a lot of women have and I was not looking forward it at all but it can be quite liberating or even amusing. Sometimes it can be just plain weird.

Day 2 embracing the bald

I’m moulting! moulting! Oh, what a world! What a world!

… but please don’t throw a bucket of water over me.

I had that spelled as ‘malting’ because I thought it was funnier but a certain friend thought I was turning into beer so I’ve changed it to moulting just for him. Yeesh.

Note: For those who need the explanation… ‘I’m melting! melting! Oh, what a world! What a world!’ is from the Wizard of Oz

Unfinished 'malting' art piece.

‘Moulting’ (unfinished)

Although it’s shedding quite quickly, I’m trying to make my hair last until Easter Sunday. Not as a strange religious ceremony but because Shannon is coming over to have his head shaved and we thought we might do it together. As an act of support, Shannon’s lovely boss at Millar and Merrigan has donated $500 to our Mothers day classic fun run team, from the company funds. A big thanks to them!

Screenshot 17:04:2014 9:52 amMy other son, Blake, shaved his head a week or so back so we are going to look like some weird cult family the way we are going. The MOTH has declined and so has Sophie. Boo!

I must say, all jokes aside, it isn’t something I’m looking forward to. I’ve always had a mop of curly hair, hence the ‘dishmoptop’.  As much as ‘it’s only hair’ it feels like I’m being stripped of my identity. Will I just look like a cancer patient now? I’ve managed to dodge the pitying looks and stares so far. Perhaps it will be liberating to have all my vices stripped away. Or not.

Of course, I do have the most gorgeous WIGS ever. Rachel Welsh ones in fact. The MOTH always fancied her so it might put a spark into the marriage *wink*.

It’s going to be interesting as I’ve always hated wearing hats, or anything on my head. It feels like I’ve got my head in a vice. I even hate pony tails! However, I’m getting a lovely hat collection going and I’m almost looking forward to wearing them.

 Chemo news

I know this is TMI but I’ve had an ‘upset stomach’ for 3 days now. No nausea, just annoying trips to the loo all day and night. I’ve gone from one extreme to the other which is common on Paclitaxel. I’m either taking a laxative or Gastrostop and nothing in between. But it’s not debilitating and the only other painful side effect I have is a niggling sore throat, which is also common.

Chemo art!

Chemo art!

The cortisone they give me with the chemo keeps me WIDE awake on the first night after chemo. I got so exasperated with it this week that I took a sleeping tablet (prescription) and I managed to get 2 hours sleep and was wide awake for the rest of the night and the next day. I think I should make good use of all that energy on chemo nights and go work in a factory or something. Perhaps they are giving me speed or something by mistake.

Now that I’ve bored you with my complaints… I’ve got exciting news. I have a one week break from chemo next week. HOORAY!!!

That will be my first ’round’ finished (4 week block). 7 to go and who’s counting?

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