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.
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 have a fetish for a man’s forearm. A strong forearm with slightly curly blonde hairs I can twist my fingers in. It always does it for me. Makes me feel safe, loved, held, invincible, fragile. And it belongs to one man. B is my everything. I could not be or do any of the crap I have to if it weren’t for him. Just holding me. Letting me be me. Being kind, being tough, being caring, being blunt. I am a fucked up case of normal and not normal, with moments of calm and moments of utter insanity. I think we all probably are, some of us just hide it better than others. I have the best gift of all. Someone I hide nothing from. Someone who really does know the dark and the light that is me. Someone who seems to see the light. And quite like the dark. I’m feeling especially maudlin today you see, because today is B’s birthday. And its a crap time for us. And I just felt i wanted to scream from the rooftops how much I adore him. And how much I know I am adored. But I know the girls would be mortified. So I wrote it down instead. You are the only reason I can do this. I see in your eyes the belief in me that makes me know I can. I don’t know why or how we found each other or what made us make it work, but I am grateful every day I breathe that I have you. Not only because of our two beautiful daughters but because I honestly know that any part of my world without you in it, would just not be. You make me be. You make us us. We are us. We are the only thing I know to be truly real. Happy birthday my angel. I love you. And those beautiful forearms.
It’s been a tough five days since chemo. I have desperately tried to remove myself from the nausea that follows me whether I stand, sit, lie or sleep. I hate the way I taste and smell, I hate the way everything tastes and smells. My body aches, I have sores in my mouth, my head feels trapped in a cave with moss in my pores. I feel so tired, it hurts sometimes to talk. But I can feel the easing. I am woman. Hear me roar.
Yesterday was a weirdly comical day with blah moments. We made a new friend Aaron, the inappropriate trauma nurse who was helping out on the chemo ward for the day. He looked more lost than us. He grabbed my chart to go through what was needed, giving me an odd look. The head nurse told him that was the next door ladies chart. Phew he said, you don’t look like a Betty. The start of many chuckles which got us through the day. I had decided to wear my new jump suit. As you do. Gotta feel stylish for chemo right. Except not so when you are attached to a chemo drip and need to wee a lot because of all the fluids flushing the poison throughout your system. What was I thinking. Aaron met my brilliant insightful oncologist and as she left the ward, wheeled his chair behind her, and said, is that your doctor? Smokin’! I think I might have cancer. Barbra our head nurse had the hands of an angel and managed to get my cannula in my fucked up veins from my previous chemo so no surgical port needed, yay me. She kept mocking the patronising tone of the dvd she shared with us showing me how to inject myself today to boost my white blood cells. You know how I feel about pratronising tones. Oh and Betty’s partner broke her reclining chemo chair. So all in all we fit in quite well. I was sent home three hours later armed with all sorts of anti nausea meds and cortisol steroids to get me through the next three weeks till next chemo. It seems my nails will almost certainly fall off. Some patients seemed to have success with black nail polish, something to do with keeping the light away from the chemicals. So, I’m having my nails done today. Bit like that haircut. Oh and B and I just fucked up the self injecting thing so perhaps we should have mocked the dvd’s patronising tone a tad less and listened more. Ok it was me, B’s beautifully thorough and I’m too impatient. I’ll take his lead from now on. I will. Onwards and upwards.