January 7th Happy Bald Day!
It was still summer school holidays, so we packed up and took off to our little farmhouse down the beach.
By now my lovely hair was falling out at a rate of knots. It was my birthday on the weekend and I was determined not to be bald on my birthday. Really as a woman, in particular, the only time you should be bald on your birthday is when you’re actually born! So I sprayed so much hair spray on it, that I probably created a second and third hole in the ozone layer. It didn’t move and I made sure I didn’t place myself into any ‘hair blowing out positions’. No air conditioning in the car, no sitting near fans and especially keep away from blower vacs!
I woke up on my birthday with the beautiful view of the Otway State Forest from my bedroom window, and my beloved little family delivering me breakfast in bed, freshly made bread and fresh coffee. I opened presents and read cards and wished so much that I would have lots of birthdays ahead of me to enjoy these moments.
I didn’t mind being older, in fact these days I am so grateful to make it to another birthday, however I did wonder how I became 42. It just seems like yesterday that I was 39 and planning my 40th, that would never eventuate because of this inconvenient illness.
As a beautiful surprise, three of my Besty Troops came to the farmhouse for the night to celebrate my birthday. To see them come down the drive way, I became so overwhelmed with emotion that they would do something so kind for me.
We spent the afternoon, sitting on the couch drinking tea and reminiscing about the ‘old’ days, when skirts were short, our hair was big and we’d tear up the dance floor with our radical 80’s dance moves. These troops go back a long way and whilst we may not see each other as much as we’d like to these days, one thing always remains constant…….. the love and respect we have for each other.
It was decided that while they were there, we would seize the opportunity and do the big ‘shave off’. As it was a very windy day, I did suggest just standing outside and let it be blown off amongst the gum trees, like a dandelion in the breeze. It would have been good nest building material for some of the local birds.
But they insisted on shaving and one by one they took a turn, ever so carefully and slowly and with much deliberation and consideration.
An hour and a half later there I was sitting out in the middle of our property, with my three troops hovering around me inspecting their handy-work.
Even my little fairy wanted to be part of ‘team shave off’. She stood their patiently until it was her turn. I’m not sure if she was happy to be part of the team or the fact that she was the only seven year old that she knew on earth that has shaved her mum’s head. Show and share will no doubt be an interesting subject at school.
After all was done, I took a deep breath and looked in the mirror. Although I envisioned more of a Demi Moore type look when she had her head shaved in the movie GI Jane. I guess I could work with the ‘professional scrag fighting’ look that stared back at me.
Whilst I admire these women for their clever brains, gorgeous looks and the love they have for me that sometimes I feel I don’t deserve. I feel much solace in the fact that they all have great careers and wouldn’t change career path anytime soon to become hairdressers. I’m not sure their good intensions reflect their skill level as potential hair dressers. Sorry my lovely troops.
Despite the new hair style, I had a great birthday, I was there with friends and family, the people I love. There was nothing else could want for….. Until the Brave Man whipped up a birthday cake. Is there anything this man of mine can’t do?
January 19th Back in Melbourne
Round 3: “Going the Distance”
Usually before my treatment, I would go into see my Health Stylist to check in, tell him how I’m feeling, and if I feel brave enough, ask some questions. Today I was feeling brave and I was armed with questions. “Why is my breathing still very laboured?”, “Would the cancer have affected my vocal chords again and is that why have I lost my voice again.” “Could it be in my chest wall?”
The next minute I was called in by someone different, a female oncologist who I had met before, lovely and very thorough, but not my Health Stylist! Where was the person who promised to save my life.
The change took me by surprise and before I knew it, my lip started quivering and I started to tear up. She noticed my tears almost straight away and kindly offered me something to wipe my watery eyes. I couldn’t quite understand the tears, so I just told her it was ‘allergies’ and she agreed that the wind can cause watery eyes. “Yep, whatever!” I thought to myself.
The following week was pleasingly uneventful.
January 30th
Shiny black shoes and new white socks………
As I get to my third chemo of my third cycle, I’m feeling like what I can only describe as a ‘trailer load of road kill’! And pretty much looking just as attractive.
But I put my fake, “I’m feeling terrific” face on and the fairy and I get organised for the start of school. New shiny school shoes, whiter than white socks and a bigger sized school dress. I can’t believe my girl is growing up.
I feel the familiar pounding in my heart, as I think about my absence during her first years at school. I so want to be involved, be a parent helper, be there for reading, but my body is just too tired and weak. Cancer is just so mean!
But I won’t let it get me down, I decide to venture out and get the car washed, so I put my scarf and hat on and my big sunglasses. Despite looking a little like ‘Inspector Gadget’, I was proud of myself for getting out and about.
As the car was getting washed, I watched the comings and goings of the people around me. A mother walked in with her two young children and a newborn. I watched her clucking around her brood, whilst they played around her feet. The dull ache of grief for what ‘might have been’ for our little family of three, went as gently as it came.
My concentration was broken when I was called as my car was ready. I walked outside and down to get my car, I felt proud that I had at least accomplished something in my day. As I handed over my ticket to the friendly car cleaning team, a big gust of wind blew not only my hat off but half my scarf too.
About 6 of the little car cleaning dudes ran around franticly chasing my hat as I stood there trying to get my scarf back on and cover up the baldness. In all the kafuffle, I thanked them and jumped in the car before something else happened like my skirt getting stuck in my undies or a whole trail of toilet paper getting stuck to my shoe.
Always trying to find a sign or some symbolic meaning with things like this, I wondered if I was just meant to stay home, or would have to resort to some kind of hat with a big silk sash under my chin, like Scarlett O’Hara from ‘Gone with the Wind.’
I stayed home for the rest of the day and waited for my fairy to arrive home after her first day back at school.
My fairy’s first week in Year 2
Night before first day of year 2:“I don’t want to go to school, I’ve got no friends.”
1st day: “I have a great teacher. She said she will turn the cooler on when it gets warm and the heater on when it gets cold.”
2nd day: “I had a great day, Mia and I are rehearsing for our own ‘Glee Concert’”…. 10 minutes later….. “What’s Glee?”
3rd day: “Mum it’s so great, did you know we get to do our homework in our very own HOMEWORK BOOKS!”
4th day: “I love year 2, did you know my teacher loves to eat Thai as well?”
5th day: “Dad can you just drop me at the gate?”
I was so relieved and happy that my fairy had a great first week as big year two girl.
February 2nd
Round 5: “Nearly a Knock Out”
I was nearly ‘yellow flagged’ as I was going in for my fifth round of chemo. My white blood cells were still unhappy and were not recovering, it was doubtful at this level I would be able to proceed with my next round. “Bloody, blood cells”, I thought to myself.
The Gara Angeli would wait for my Health Stylist to wave the ‘play on’ flag. We all waited with baited breath. Finally the go ahead came through and I was given the ‘good juice’, along with a little ‘white cell’ booster shot called neulasta.
The neulasta is an injection that I was to have 24 hours after chemotherapy, I had the option of coming back into the hospital to have it, or I could do it myself. I figured it was only a little prick that I had to endure for half a second, unlike the big one I have endured for the past 6 years.
The following week was as I expected, an unconscious blur, with a lot of ‘vertical stretching’‘*. My bones ached and felt like they were being crunched in some kind of medieval bone crunching vice. I didn’t mind so much because I was told this would be a side effect of the neulasta.
“Grow little white cells, grow”.
The Brave Man managed to get us packed in the car and we high-tailed it to our farm house like Thelma and Louise. (Without the driving over the cliff bit)
The weekend was filled with loveliness from wild blackberry picking, to deer and wallaby spotting, to perfectly still and peaceful nights that held the fragrance of the country air all around us.
*Vertical Stretching is from my ‘Lovely Lexicon’.
Definition: Words used to describe ‘lying in bed’ when you’re sick of saying “Lying in Bed”, when it seems that all you do currently is spend 90% of your time “Lying in Bed”.
Ta da! A yummy country baked wild blackberry pie. All made by my beloved brave man he even put our initials on the top. Is there anything this guy can’t do at all?
February 15th
The Eve of Round 6: “Floating like a butterfly and stinging like a bee” Muhammad Ali
I really avoid crying at all costs these days. Not because of my precious eye lashes that end up being collateral damage, but because once I start, it wouldn’t be just a few tears, it would be a whole tsunami of tears.
I had held them off for so long, but today was the day they decided to catch me unawares. A few little things that happened during the day including my latest blood test results, chipped away at my “be brave force field” and there I was sitting in my car, bawling my eyes out, or my ‘eyelashes out’, as it were.
Not such a big deal in the grand scheme of things, this time my red blood cells weren’t happy, causing me to be anaemic. So a blood transfusion was going to be on the treatment menu for the next day.
It’s just that sometimes all this can be so overwhelming, and the fear can invade your thoughts like storm troopers. It takes a lot of energy and willpower to get back to, ‘being in the moment’. And it was just at that ‘moment’ when I could feel the ‘tsunami of tears’ on their way, that one of my troops rang me.
Her beautiful voice and kind words calmed me down. Her reassurance that everything would be ok, distinguished my fear and recharged my hope.
My Brave Man came home and held me in his protective arms and he too found the right words to reassure me that everything would be ok.
I went to sleep that night feeling back in the moment, floating like a butterfly, ready to sting like a bee at my sixth round of chemotherapy the next day.
Rachel, your story is just so touching I cannot begin to explain. I have never had anyone close go through what you are going through and I have an amazing insight thanks to your honesty. All I can say is that i think of you often and pray to the angels that you are going to be fine. I think you are an amazing woman with a special brave man to look after you and your fairy is so precious…. All my love Lisa xxxxx
It doesn’t have to be the big things that trip you up. The small things can really sucker punch you because you’re not expecting it.
Blood transfusions sound awful. And they’re not exactly a party. But a blood transfusion I had initially fought made all the difference to my recovery. It felt magic.