So the dust has settled two months post my aborted fourth chemo session. It wasn’t as magical as I had hoped. Or as miraculous. I’m no more able to digest nor make decisions about tomorrow. So I’m sticking with today. I saw my brilliant insightful oncologist on Monday. I had decided I wasn’t liking her as much as I thought I was, but I’m realising its more to do with her lack of emotion than her counsel. She smiles a lot but her eyes don’t twinkle. Its got to be tough dealing with disease and death daily. So I feel for her, and I decided to cut her some slack. So whilst Im still not really liking her, I do admire her. Hugely. I was frustrated that I wasn’t feeling significntly stronger than the last time I saw her. How constantly fatigued I am. How sore I am. How there is no feeling in my fingertips. How sluggish I feel. How sluggish my mind feels. How podgy I am. She reminded me of the trauma my body, never mind my mind, had been through and continues to go through. Extreme fatigue is a reality for 3-6 months post treatment, and I’m not even there yet. Never mind the extreme reaction I had to the taxotere. I mentioned I wanted to move forward. I wanted to be me again. I wanted to do everything I needed to do this year, so next year could be a better one. She said no. Well, not so bluntly, but basically told me to go away and not rush anything. This is a long term plan. We are managing a long term reality. My ovaries have shut down so an oophorectomy is not necessary. Removing my right breast is a decision I need to make, but right now there is no survival benefit. Had to write that down. No survival benefit. More concerning is the recurrence we’re dealing with appearing in other organs than a new cancer in my healthy breast. No survival benefit in my current reality. More risk, given the trauma my body has been through. I’m not really responding well to the language she is using. So the instruction to me, continue with the lovely Aromasin, monitor the side effects closely, get beyond the fatigue before making harsh calls, see my kind brilliant cancer surgeon in October and her again in November. With numerous blood tests in between. The reminder we are managing a long term reality. Living with cancer. And managing it. Luvverly. So we celebrate NED. We celebrate magic but not miracles. And we move forward. Moment by moment.
I’m trying to be understanding and not throw something. This is how I started a post last week but never shared. I also didn’t throw anything. I just let it go. I know love is shared in a multitude of different ways and I know the terrain of cancer or any disease is not one easily traversed by those on the sidelines. And I understand how we all view the world is sculpted by our own experience and reality. But really. If you know me you know exactly who I am and what I think. Because fortunately or unfortunately there is nothing I do not share. I’m outspoken, I swear, I’m hardcore, I’m soft, I’m firm, I’m flexible, I’m insecure, I’m bold, I’m cautious, I’m controlling, I’m fallible, I’m scared, I’m brave but what I’m really really not is judgemental. Even the things I share about how not to speak to a person with cancer should be read in the tone in which they are intended. If that makes you fearful of how to be with me then its obvious to me you really don’t know me. Just tell me how you feel. Just rock up on my doorstep. Leave a note in my letterbox. Just send me a message. Call me. Just be there. Without your presence needing to be acknowledged because believe you me it is. No one is invited in. In to what? It just happens. But whatever you do, know I will not respond well to judgement of any kind. Especially not judgement and self pity masquerading as love and concern. I want to bold that last line, but I don’t like bold fonts. This fucking world is tough enough for many of us at times and when we are blindsided by more crap all we need from our friends is fuck I love you , I’ve got you. I’ve got your back. And don’t tell me you are concerned for me or fearful of the choices I make. How insulting to me and my life thus far. I’m an educated aware woman. If what I feel I need is a long lunch with copious amounts of pinot gris then believe you me that is exactly what I need.And if that makes you worry about me, hah, how sweet of you but really find someone else to worry about. I’m sorted. I never asked you to. Life is a beautiful wonderful and yes, sometimes fucked up gift and I’m determined to make the most of every little moment without worrying about what you might think. And if you are thinking about me please let it be with regret and kindness because I promise you that’s what I’m doing for you. Because really really, people in glass houses shouldn’t throw stones.
I will be pleasantly surprised apparently at how fast my eyebrows go back. So said my oncologist and actually I am. She was also a tad non plussed that they fell out a couple of months post treatment but then again it does happen. And they are growing back, all just looks a bit smudgy now. I’m less pleasantly surprised that my eyelashes were also not done with falling out. But the little stubby bits also seem to be getting a tad feistier. I’m a little done with this all.This letting the dust settle is not as easy as it seems. At least before I felt like I was busy in treatment as unpleasant as it was. I was actively doing something. Something more than popping a horrendous pill that just makes me feel old. I’m finding it rather hard to settle back down to being me. Because I don’t feel like me. But I’ll find me. Just like my eyelashes, I’m feeling a tad feistier everyday.
I’m trying my damndest to say you go girl as I put mascara on my three eyelashes, two on one side and one on the other. It’s not working so I’m about to text my friends and say if either of you moans about not knowing what to wear I’m going to spew in your faces. Fuck fuck fuck. I have tried on five outfits. All my clothes are fairly classic and not frou frou at all, okay then borderline masculine, and yet in all of them I look like a fat bald chap wearing a dress. No offence meant but just not the look I was going for. Fuck fuck. And then I burst out laughing and never sent my text cos oh for fucks sake. Who really cares. It is what it is. I obviously get the big picture life blessing. But right now I’m having a little picture vanity moment. And to be honest its actually quite liberating because there’s not much I can do about it. I could have got false eyleashes I suppose but they’d struggle to stay pasted on with nothing to cling to, so for what. And I could continue to feel sorry for myself. But for what. Because I don’t feel like me. I don’t look like me. Fuck that. Who cares that my eyeliner smudges everywhere because there are no lashes to stop it from bleeding. Or spreading. Or whatever the right terminology is. Did you even know that was a thing? Me neither. But still, on goes that eyeliner. I’m quite liking this not giving a damn moment. But please don’t tell me I look great with that look in your eyes. You know the one. Just lean over and unsmudge me. It is what it is so help me be me. Because sometimes it’s a little hard. A little hard for all of us to be us in any given moment. So just lean in. Oh and you go girl.
You good? A question I have been asked a few times this past week. By those who don’t know me well but can see by my bald head that life clearly has gone a tad awry for me but don’t know how or why. Quite like that question. Asks everything yet really expects nothing in return. Allows me to say yip I’m good. I don’t need to answer how I am because then I’d need to think about it and I don’t have the energy. And to be honest the relief in their eyes when I say I’m good is almost palpable and so beautiful I feel good. And so it goes. And in the greater scheme of right now I am good. Really good. The dust is settling on the mayhem of the horror that was. I officially have no evidence of disease, my hair appears to be sprouting, albeit not quite uniformly, but hey its hair. But in the lesser scheme of things I am tired, so very very tired and sore, so very very sore. The cancer meds are not easy to take. The upside is I get to nap most afternoons. The downside is I’m starting to plan my days around those naps. The upside is I’m gaining some clarity in those quiet moments. And there is no downside. Disease is a funny thing, it shocks you awake in a weird way. Facing your mortality opens your eyes in ways you don’t want to see. But also do. It makes you feel foolish for thinking things mattered when really they didn’t. It makes you so very grateful for seeing what matters, for knowing that humanity matters and for how blessed you are and encourages you to let things go with love but with relief. Somethings and some people are happily just not for you. I am me and I am living my truth. Because sincerely life is so very precious and honestly I have no more fucks left to give. For stupidity, narrow mindedness, bigotry, indifference, xenophobia, insincerity, fear and hatred. You go your way. I’m good with that. Really really good.
I was asked about my new tattoo yesterday. I haven’t yet understood my need to mark the insights and the awareness that cancer has brought me onto my skin. Maybe its as simple as a need to make my own beautiful statement rather than only see the ugly scars I had no control over. And don’t worry, I do see those as beautiful too now. But you know. And probably also the realisation of the impermanence of it all. So who really cares? Go mad I say. My beautiful refined heart tattoo is shared by all as I hold my hands up in thanks and gratitude and to honour the love in us all. Notice the play on refined and tattoo and see my wry smile. It is no surprise to those who know me that I admire women. I admire all humanity, but I reserve a special spot filled with admiration for the strength and connectedness that exists among women. Those who allow truth to be their story. And we are blessed with many such women in our family. An uniquely strong bond exists between us all. My sister and I are blessed my brother married our soul sister. And my mother is our reluctant heroine. She is beautiful and difficult and funny and delightful and impossible and has an inner strength we all have inherited. And its that strength that binds us and that allows us to know no matter what, we can do and be anything. We all have two daughters. And all six girls are beautiful creatures, both inside and out. And the bond they share is exquisite in its absoluteness. And without this unique and true sisterhood my life would be incomplete and my strength would be diminished. Cancer made us all look up and see once again the fragility of life and the beauty of love. So we decided to honour this beautiful bond and the love we share and we cherish with an exquisitely delicate heart tattoo, connecting us all in a very personal way. We will all always be one and together nothing is impossible. It symbolises the strength our love gives us all. To carry on. To be the change. To honour ourselves and the love we share each and everyday. To know how strong we are. But most of all it celebrates life. And our gratitude for it all. Its a little heart but what it symbolises is huge.
It’s been a month since my last chemo and four short months since my life was thrown into disarray. I’m not sure if the fact that unless I have to I’m not making it out of bed before 11am has everything to do with my body healing from the onslaught that has just been or my mind refusing to deal with my new reality. I am good and positive and so very grateful and my smiles are real but I am struggling a tad. I started taking the Aromasin, despite really resisting it because of the side effects and because, denial. It’s prescribed for advanced breast cancer in post menopausal women. Me. I lied in my earlier post about getting through the grief at losing who I was and having to accept who I really was and am. Well not really because it was a subtle tongue in cheek post and a huge cry for help. And I know I’m not defined by this but it’s my now moment. Then for some macabre reason last week I purchased a book called Without my mum. You got it, the mom dies of cancer at fifty or thereabouts and the woman has to deal with the reality of being a motherless mother. I don’t like that description. And not only because of what it means. It’s just horrid. Could be other ways of saying the same. A motherless mother. Clearly I’m not wishing that on my girls. I mean really how would they cope. That was meant to be funny. So I took my damn tablet. And will for the next 5 years at least. I could simply exercise even more, sprinkle more turmeric, imagine my cancer leaving my body and hope for the best. Or I can be an even more active participant in what is and what will be. So I’ll do both. The only problem is I have to find a way to get out of bed earlier first.
There is no magic number. A chemotherapy regimen is recommended based on you, your cancer, its stage, its idionsyncracies. And four combined cycles of taxotere and cyclophosphamide, so eight in total, our learned friends have discovered is optimal in most cases (can I stop proving I’m not most already) to achieve the desired result in cancers like mine. But four is not a magic number. I’m believing for me it’s three. And the irony of my love of all things symmetrical is not lost on me. So, I saw my brilliant insightful oncologist yesterday, and dammit she is brilliant and lovely in her slight emotionless yet very present way. We discussed much and then she sat back and said, right now I want you to just let the dust settle. For two months just let the dust settle. Is it only me who imagines the sparkles in that dust? I’m letting that magic dust settle. My body and my mind and my family were thrust into some fucking mammoth grinder the past four months with no warning, no reprieve and no breathing space. So for two months we breathe and I heal. I can do that because my brilliant insightful oncologist told me to. The reaction I had was a delayed hyper sensitivity to taxotere on a scale she has never seen. The risk of giving me more could result in life threatening internal swelling and long term tissue damage I’m not signing up for. The other option could be to start me on a new chemo regimen, from scratch. But, both my brilliant insighful oncologist and I know that will not be my reality. And she is comfortable with that. And so, so am I. Because my cancer is hormone receptive the past 12 years I have done everything I can to block all estrogen. Fuck has it been 12 years since my first diagnosis. Really? Can you blame me for being bored? But hey, I’m still here. Anyway, despite various meds I have been on to do this, and even very rudely been forced into early menopause, it came back. Or it never left. See, mindfuck. So I’m on a new kick ass adjuvant therapy the goal again, 5 years. 5 years NED. Aromasin, an aromatase inhibitor used to treat advanced breast cancer in post menopausal woman. Yup, thats me. Excuse me whilst I quietly upchuck, haven’t we been here before? Anyway. I’ve noticed the use of the acronym NED more and more. So, I haven’t been cancer free, duh, the past 8 years, I have just been 8 years NED. No Evidence of Disease. Slow learner, or just my denial coping strategy? So, I get that I live with cancer. And am happy with NED. And remain vigilant. And healthy. And that there are no absolutes. There are no one hundred percents. There are no guarantees. But there is the beautifully messy thing called life. And I love every last messy bit. And once the magic dust has settled and I am more me and less embroiled in this mindfuck. We will decide the rest. In the meantime, last chemo celebrations are way overdue.