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.
I had a little tantrum yesterday. As in, I don’t wanna do this again. I can and I will and I am, but I really really don’t wanna. It’s those fucking bald spots that did it. And I know I am so much more than my hair, and I know I am blessed to not be terminal, and I’m doing this to ensure I am not terminal anytime soon, but allow me this rant. Rocking the no hair look, and I mean no hair, no eyebrows, no eyelashes, no pubes, yay me, should be a once in a lifetime achievement. Dammit. I know you can all see through the smile, it’s kind of hard to hide the vulnerabilty in my eyes or the tears that well up when I least expect it. And I am brave and I will do what I need to do, so please believe that what I say and what you see is true, but bloody hell, I don’t wanna. It’s cool to be unique, to be different and yes to be the one percent. Apparently that is what I am. A one percenter. The likelihood of cancer recurring after a mastectomy and chemo is one percent. Seriously. Serves me right for always wanting to stand out.
So. Think I’m feeling the trepidation of knowing what’s coming. Welcoming it in a weird way because it’s still my best shot. But this thursday I willingly poison myself again. Time to shave me thinks.
I’m so not a hero. Whilst I’m blown away by all the beautiful comments due to my oversharing I really am not. A hero I mean. I’m just really trying my damndest to get through this thing intact. Well intact ish. And to be authentic. I don’t believe in the always be positive crap. I mean obviously be positive. But always be positive? What a crock of shit. Sometimes be sad and own that moment. Sometimes be angry and own that moment. Sometimes be vulnerable and own that moment. And yes fuck it, share it with those who love you. Be authentic. No one is happy and positive all of the fucking time. That is just weird and masks you from real emotion. It doesn’t allow people to let you see them in all their ugliness and glory. But let them be moments you allow, acknowledge and let go. Because being happy and positive is so much a better choice. So I choose to love this beautiful messy life we are all blessed to share. I’m a bit of a quote girl and fuck me I think I’m becoming a tattoo girl too. On my list of things to do today is phone my oncologist to find out if my white blood count is high enough so I can get a tattoo. I mean really, who is so deep in la la land. Anyway. A quote my girls have heard ad nauseum, you can’t control what happens to you, only how you choose to respond, is how I choose to live my life. The big word for me in this is choose. We have a choice. That is what sets us apart. And makes us us. Why would you choose to give up? To be fearful. To not be positive. I don’t. So the hair thing is really a choice to live my truth. Saying fuck you to this thing. But yet acknowledging it. My hair will fall out. So this is not a new hairdo but a big huge it is what it is. See the quote thing again? Anyway it’s choosing to be light at a not light time. Choosing not to go into hiding. I wake up and see this strange odd woman looking back at me and I smile. And I feel like a warrior. And why would you not. Not decide to smile. A smile hides a heap of shit but damn it can make you feel good. It’s just a choice. And if that makes me heroic, dammit I’ll own it.
So where am I now. Day 13 of first chemo. They count it in days. Because at roughly certain days you should expect a new kind of hell. So on day 13 I’m supposed to feel slightly less nauseous, more fatigue, the debilitating muscle pains should abate, and my white blood count should improve. All good in the land of hell actually. And just as I feel like me again it’s time for the next round. And that’s next week already. Day 21. When my hair should fall out. Loving the should. Maybe I’ll stay blonde. What a hoot.
I wrote an earlier post which I deleted because I was angry when I wrote it. I guess the only message I really wanted to convey (but it was lost in the rant), is be kind. This again. Think before you speak. Especially to young women whose mothers have just been diagnosed with recurrent breast cancer. Don’t be ignorant. And don’t assume I am. Or they are. It’s truly unfortunate that they aren’t. But it’s condescending to assume they are.
But. This post is a good news one. Goodish. Preliminary PETscan (I’ll write it in capitals because I don’t mind it having power today) results show no areas of concern elsewhere in my body. But. There is now evidence of what appears to be an ‘internal mammary lymph node mestasteses’ in my right breast. Whaaaat? Anyway, now I have to have another fine needle biopsy and CT scan early next week to check it out. Then armed with all this fucking knowledge, the medical oncologist will decide what next. With me of course. But right now, it’s mostly good news. Just with a damn but.
I have to admit I lost the plot a little yesterday. And not because the news is bad but because the news is incomplete. And how could I have forgotten. There is nothing finite about this. We can only deal with each bit of information as it presents itself with care and determination. Well yesterday was a fuck that, what does that mean kind of day. Not much dignity around. Today is a little better. So. It appears I have invasive papillary carcinoma. The word that threw me was invasive. Not what you want on your path report. Actually what you really don’t want is a path report. Anyway. My kind brilliant surgeon is quietly confident he got it all and with safe margins. And I like him. But that damn word again. Invasive. I so wish it was that’s that. Carry on juicing, being positive and eating raw food and we’ll see you next year. Oh and sorry for the divot in your armpit. Okay so maybe today isn’t really a better day. Anyway. Now it’s over to oncology. Apparently I am a little of an enigma third time round. You’re kidding right. So my case will be discussed on Tuesday at a round table with all these brilliant oncological minds and best route foreward discussed. Whilst they do that I have to have a pet scan to see if there is any indication of invasiveness. Any need for more surgery. But my kind brilliant surgeon is quietly confident there won’t be. And I like him. And his gentle positivity. So I’ll hold onto that and retreat into my cocoon for today. Safe in the knowledge once we have all opinions I will make the best decision for me. Because only I can. And that tomorrow I’ll be in a better mood.
15 January. My final grateful, gotta love a leap year. I am grateful for a final contemplative moment. For a weak wireless signal, so I found myself on the balcony desperately seeking connection. To no avail. But an imperfectly perfect end to my 366 gratefuls. I am grateful for real time and real connections. They are all that matter. And for them I will never ever stop being grateful. For love. And for this glorious imperfect life.
13 January. My friend Leigh. I am grateful for my friend Leigh. For my pioneering friend Leigh. She is a teacher, a sage, a leader, an inspiration. I am grateful for her honesty, her bravery, her sharing, her ear and her forever friendship. She has lived through some serious shit, and that smile is always there. She has taught me there is always a way. To fok maar voort. With style. And grace. And dignity.
My 365 or 366 gratefuls came to an end on 15 January. Clearly I am playing catch up, or avoidance. In my defence being away from any form of reliable connectivity is the real reason. I think. Actually it has been a blessing and a curse. A blessing as it’s given me time to consider what now, and a curse because now I’m behind. And I never miss a deadline. But I’m starting to understand there is no deadline. And imperfection is exquisite. And as a dear friend of mine wrote so very recently, beginning takes courage, but continuing takes commitment and determination. And courage too. At this point I’m doing neither, but loving that in life there truly is no deadline. So, what will be will be, what will emerge will emerge. Right now, I’m relishing sharing my last days of chronicled gratitude and the change I feel within me. As subtle as it may be.