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.
Home. Dammit I love this place. Am still on some serious cortisol steroids and am a little out of character at times. Read unplayable. But no oompaloompas here anymore. It seems I had a particularly severe reaction to the chemo drugs. That severe that they will not risk giving me anymore. So that’s it for me and chemo. That’s not it for treatment however, there will be aromatase inhibitors going forward, probably a prophylactic right side mastectomy, an oophorectomy, which is a removal of my ovaries and heaps more in store. Who knew turning fifty was going to be this much fun. Anyhoo, let’s focus on the good right now. I probably will not lose the few lashes I have left and my brows have been hanging in, albeit thinning. And believe you me right now anything is cause for celebration. I have struggled a tad, I will not lie, with the inability to complete the chemotherapy regimen. Then again if you know me you would know that. But my doctors have been incredible in their choice of words. In their certainty. In helping me deal. I preach acceptance so now is my time to dig deep. I was so strong and able going in, and kicked some serious chemo ass, that I got done what needed to be done sooner than expected. And then my body said that’s it. No more needed. So that’s their story and I’m sticking to it. I have done what I must. And what I can. And to be honest, I can’t anymore right now. So next wednesday I meet with my oncologist again and no doubt will cry and question and laugh and fight and get some more answers and some more reassurance. And maybe even a gold star. And then on thursday, there will be no chemo.
So it seems the crown on my head as the self appointed poster child for chemotherapy has slipped. They tend to do that when we think we’ve got things. Love these continual life lessons in humility and limitations and frailty. I was rushed into ICU on Sunday am with an extremely severe reaction it seems to docetaxel, one of the chemotherapy drugs I receive. Day 10 into my third chemo. It presented on Friday as a rash on the back of my neck which rapidly took over most of my body with hive like welts and was beyond endurable, burning and soooo itchy. Suffice to say I endured, googled it, called oncology on Sat, spoke to the doc on call who was not too fussed mostly because I didn’t have a high temp and gave me some obvious suggestions. Dickhead. (Clearly I was not a fan of his manner). So I proceeded to self medicate with a bicarb bath and coconut oil. Soothed me momentarily. Ok for about 5 mins. Then took some serious antihistamines and antiinflammatories and pain killers too. Did not sleep a wink all night. Oh and nor did B. Happy anniversary angel. Through thick and thin hey? How you loving me now? I couldn’t scratch so I rubbed and smacked and raged and hit my body against anything I could. Including B. Pain seemed a relief from the burning neverending itch. Early am I went to the bathroom and collapsed on my return, into B’s arms. Have I mentioned I love him. He heard me mumble something, probably fuck, jumped out of bed and grabbed me before I could smack the floor. I came to hearing him call angel, angel, angel (he obviously still loves me) with a slight panic in his voice. That was when I started to panic. What the fuck was I doing on the floor? He bundled me back into bed, took my temp. 37.9. I have four emergency chemo cards that all say at 38 you rush to the hospital. Do not pass go. Not 38 yet. So I reckoned, I’d self medicate with the dexamethesone, cortisolsteriods I take before and after chemo for immediate allergic reactions, and this is clearly an allergic reaction although not immediate. See how self sufficient I think I am? But I needed to eat to do that. So B went to get me something to eat. Isn’t he lovely? I fell asleep for two hours. So didn’t eat or medicate. And woke up to a temperature of 38.3. So B took me to emergency, and because I have a beautiful bright red alert card, I was rushed though. I was quite a sight and they admitted me immediately to ICU, where I overnighted for constant observation. My temp was sky high and my blood pressure was scarily low, and my white blood count was high, all that could indicate my body fighting a serious sepsis, not just an allergic reaction. So, I was hooked up to every machine known to man, and had a very eventful, not restful evening due to the cortisol steroids and whatever they gave me. Apparently I was quite agitated during the night. Moi? I suspect it was because I told a lovely nurse (fuck they are all lovely and true angels that walk this earth) off a little. Only because of Bill, a lovely old gentleman who had had surgery on his hip and was completely confused from the anaesthetic so kept thinking he was at home and calling for his wife and daughter and trying to remove his drips and generally and understandably frustrating the very busy ICU staff. But still, Bill was a human. A real sweet human being. In the middle of the night I heard a broken helloo…hello… hello. From Bill. I waited and no one came. We have monitors to press to call the staff but he obviously couldn’t or forgot. Again hello ….hell..o? So I thought fuck it. And pressed my button. The nurse came instantly. She has to walk past his bed and I even heard him saying hehell..o? as she passed. I said to her I’m fine but I don’t think you heard Bill calling and it’s been quite distressing to have heard him throughout the night, he is obviously in much pain. She said yes, she did hear him, and they go to him constantly, but he is so confused and is convinced she is his daughter. I said to her, well, go be his daughter. She looked at me. Said so you don’t need anything. And walked away quite rapidly. I thought fuck maybe I wasn’t sensitive enough to how much she has had to do but fuck it, poor Bill. But I heard her go sit gently with Bill and reassure him and chat and do all those lovely things. Unsung heroes I say. Anyway I slept well after that, never heard sweet Bill again. Or anything. Until 5am when an uppity little phlebotomist came to take blood and insisted she had to use my right arm, as my lymph nodes have been removed from my left arm. Started smacking at my flat to non existent veins. I know well those are the rules. But when your veins are flat to non existent from chemo and your arms are swollen to twice their normal size from some weird reaction and the oncology nurses can’t get in under usual circumstances and the senior emergency nurses couldn’t get in and the ICU nurses couldn’t get in, and believe you me they tried, there is no getting in.They finally found a vein in my left foot (C the humour does not escape me) that they had cannulated and were using and protecting. So believe you me, miss uppity you are not getting in. I obviously didn’t call her that and I was friendly. But she was uppity. And it is useless to try. And hell for me. So you have to use the left foot as have all the others. For blood, for drips for whatever. Blow me down if she doesn’t start smacking at my veins on my swollen right oompaloompa arm again as if she’ll do it. There was nothing about her that inspired any confidence. I pulled my arm away and said I know what your rules say but you are not trying my arm, you will not get in. I have a cannula in my foot for you to use. She definitely flounced off saying well if that’s your decision. I said it is, and actually, I said, speak to the doctor and see what his decision is, or anyone on this bloody ward. Ok so maybe I was a little agitated. She went straight from me to sweet old Bill, and I heard her ask him to roll over. The fucking man has just had major hip surgery for fucks sake. Thankfully one of the ICU nurses rushed over and said exactly what I had thought. Well, not exactly. What a prick, scuse the pun, if she were a man. Anyway, after a bit, Monique, one of the beautiful ICU nurses came to me. Clearly miss uppity had been telling tales. I mentioned I might have been a bit rude to miss uppity who was so officious and really not listening to me. Monique simple bent down on the floor, asked me to dangle my foot over the edge of the bed, and took all the desired blood. And told me not to worry, she is like that. Why they send ‘professionals’ to do the job the ward staff do a million and one times is beyond them. Said under her breath. So bloody agree. Unsung heroes again. Anyway, perhaps I was a tad agitated, but apparently they gave me my steroids very late which does tend to hype one up. I woke up Mon morning in ICU, with no more clarity, but a slightly reduced rash, but still oompaloompa arms and very low BP. Moved me to a private ward to keep me under observation and on all kinds of fluids and antibiotics, did an ECG and bloody hell I don’t know what. So far it has been diagnosed as idiopathic urticaria. Bascially means severe rash caused by no idea. Clearly related to chemo, my depressed immune system but just not presenting as expected. Love being difficult. So the lovely head honcho doc here has me in his care and together with my brilliant insightful oncologist will no doubt come to see the way. If not the light. So I’m here for now, until I agitate them too much. Whilst singing their praises of course. Its just that I know more about me than any one of them. And I’m determined to see this through.
I was taken out by the knees this past week. I have been feeling far too cocky methinks. So whammo. The accumulative nastiness that is chemo kicked me in the guts. Whoooomph. I am emerging today. Full of self pity and self hatred at the self obsession this reality forces whilst the world is burning. Me, fighting so hard to be here and one sad fuck removes the choice to be here from 49 beautiful innocent people. It is incomprehensible to me. I know to us all. Incomprehensible that love is not enough. That fear dominates. We cannot let it. We dare not let it.
In the world of me, I am 6 days into my third chemo. It has been a struggle. I have hobbled and slept for 6 solid days, interspersed with nausea and pain and darkness and rage and tears and generally cuntish behaviour. There are no reserves of decency to draw from in those deep dark moments so why should I pretend. It is what it is. It destroys you, reduces you to nothingness, but leaves just enough for you to rebuild. And I can. And I do and I will. Because I am here. I still have a choice. When so many don’t.
B shaved my head this morning. Not much can beat that for a truly intimate, I see you moment. You see nothing in life is ever perfect. Your hair doesn’t fall out neatly all at once. Each chemo session ravages you a little more. Bit by bit. But it also allows you a semblance of control. Of ownership. I have huge bald spots. I would look like coco the clown on a really bad day if what still remains grew. Or something from a horror movie. Actually I’ve always hated clowns. Anyway. How strange our new normal is. Yet how beautiful. The girls wander past the bathroom. Not even pausing, just smiling. It is what it is. We do what we must. Another 21 days are nearly done, which means it’s chemo this week again. Damn time rolls around fucking fast. Feeling less vulnerable, but still prickly. Just trepidation I think at what this week holds. And sets off. And at my fragility. It slowly breaks you down. Bit by bit. Thank fuck I’m halfway. It really is all up from here. Time for some red lippy methinks.
I’m a bit fragile at the moment. Definitely feeling a little vulnerable. And a bit prickly. I’ve noticed it by having to take a deep breath as I get out my car, or sending Jem into Coles so I don’t have to go, or yesterday when I met my beautiful friends for coffee. I texted to make sure someone was there so I didn’t need to walk in alone. And bald. Yip it’s the bald thing. I know it’s a choice (well yes and no because whilst I hate the wigs, beanies, caps and scarfs all irritate my head too) but shooweee sometimes I just can’t rock it. I suspect it might be due to the allergy I picked up resulting in big swollen red eyes too. Bald head I can do. Bald head and fanny eyes is just too much to ask of anyone. Anyway the eyes are better but a little fragility was left. And sitting having coffee with my friends, a lady I know came over and chatted to us all, and didn’t say anything about me sitting there bald. And we were discussing her new hairstyle, which made it all even more awkward. I got a bit prickly about it afterwards, especially when my friends defended her by saying she probably didn’t know what to say or how to to say it, or whether I would want it to be acknowledged. And I get that. I do. But I really don’t want to be the elephant in the room. The fact that I am out there in the public domain, bald, naked, please acknowledge it. And me. I promise it’s harder for me. I can’t walk away. And it makes me feel better to be seen. Really seen.
So by now some of you may have seen the video B posted of me. It was not a good day but I guess that’s the point. They aren’t good days. They’re the best we can make them days. So whilst I’m so grateful for all the beautiful comments about how wonderful I look, how well I look, they worry me. I don’t want to in anyway trivialise the awfulness, the fear, the yuckiness, the desperateness, the late night bathroom floor moments, the self pitying, the pain, the soreness. It’s hard to share those moments, but it’s easy to share the smiles. It’s not always easy to smile mind you and I think you all see it for what it is, but I just need to make sure you do. A choice. A touch of lipstick, a creamy foundation, some mascara on my fast departing lashes, is my armour to fight the day. I share because I want to give strength to those who are struggling, to show how sometimes a smile, tough though it may be to smile, helps lift the spirit and does give you energy to move forward. That chemo whilst it makes you feel shit, is not something to fear. If even just one person who chose not to do chemo because of fear, fear of being bald, fear of the debilitating side effects, fear driven by others fear, fear driven by others self serving ideologies or conspiracy theories or self healing crap and then leaves it too late sees me and feels hopeful, then fuck it’s been worth it. Healthy living, healthy eating, exercising, reducing stress, being mindful, making the right choices, keeping your system alkaline, living a moderate healthy life are all fucking givens for living. I did it all. I lived it. Yet I got cancer. So, what? Am I a bad person? Do I have many lessons to learn? Fuck yes, we all do. But the one I have learnt is do not fear. It’s what kills you.