Things didn’t quite go to plan on titsday. Damn I love my witty friends. It seems complications can arise with reconstructions. You’re kidding right. Especially when you’re dealing with one mastectomy from more than ten years ago with radiated flesh, scar tissue from numerous surgeries due to unexpected recurrences etc etc. And one mastectomy from September with no expansion, my call, and extremely thin skin due to the aggressiveness of the treatment. As one should do with a one percenter. Anyhoo, my latismuss dorsi flap used for the initial reconstruction phase on the right had lifted a bit, so needed to be tightened and needed a small implant to fill the space left. There was no space for the smallest implant necessary on the left ‘breast’ to match due to no expansion, my call, on the right, so the old ten year old implant which had to be removed was removed and replaced with some fat grafted from my tummy. Not enough clearly cos I see no evidence of it bar the bruising and the pain. And cos my left previously beautifully but too large reconstructed breast now looks like I breastfed my children with it. I guess I said I wanted what I had. Didn’t mean it literally though. And the right looks like and feels as if it is bolted to my chest. And has no nipple. Basically I woke up a little underwhelmed. Underwhelmed??? What was I thinking. I always preach about managing expectations and the reality of how reconstruction from nothing is different to simply augmenting an existing breast, how its not a boob job, so why the fuck did I believe it was? After all these years and all this knowledge and all the pain and all this growth. That I believed I would wake up with two acceptable looking smallish breast mounds with two acceptably reconstructed nipple like things, finished and klaar. And therein lies the problem. I so desperately wanted this all to be done, I heard what I wanted to hear, and believed that despite my stylish Canadian plastic surgeon making it very clear he wouldn’t know what he could do until they removed my old implant and saw what they could do to match two very different realities, what they would do. I heard him, but I didn’t listen. I just knew he would do what I needed him to do, because it was time. Because surely this I can control when there is so much I can’t. Like any of the past two years and my uncertain future. Fuck me the chick is a slow learner. Nup. Not time yet. So I’m well, healing and waiting to see how things settle before we do the next step. Because there will be a next step. For fucks sake. But the point is, really really is, I am well. For now. And that’s the best outcome ever. What the fuck was I thinking. Anyhoooooooo. Onwards and tits upwards.
It’s time. About fucking time actually. Bizarrely almost 2 years to the day my world turned inside out again. In my last post I mentioned on 13 December we would decide to expand or not. We decided I needed to decide. I decided not to. I want to go back to the size I was. Not who I was because fuck she was a handful, but so were her boobs. And those I liked. Anyhow she doesn’t exist anymore and nor do her boobs. I was told to go away and have Christmas with my family sans expansion and we would reschedule surgery for the new year. So I did as I was told. January was too soon healing wise, and in February my stylish Canadian plastic surgeon decided he needed a break. So 6 March it is. And not a moment too soon. Fuck me these past two extra months carrying around this uncomfortable unexpanded tissue expander in lieu of a boob has been a tad challenging. But also started to become weirdly normal for me. I became strangely ok with this is how it is right now. Every now and again my bikini top would slip down, not much to keep it up, and no I can’t wear a fake prosthesis cos the unexpanded expander under a very thin layer of skin is damn uncomfortable, or I’d catch a glimpse of myself in the mirror, not often I might add, I keep myself hidden from myself. Just so I can forget for a while. You know that out of sight out of mind thing? It works wonders you should try it. Until I notice someone’s glance linger where there is nothing, well there is something, a weird crinkly something, sort of not nothing but not enough of something. Anyway I catch a glimpse, shudder and think damn must get that sorted. That is not attractive. Should really just have gone free and flat. Nope still not there yet. I like me some boobs. Even if they’re not really boobs. Smoke and mirrors y’all. Will be very happy to be a handful again. For now. No Evidence of Disease and a handful. Yay fucking me.
So Tuesday my stylish Canadian plastic surgeon will remove the unexpanded tissue expander and fill the space with a small implant and reduce my left previously reconstructed breast to match. He will also do what he does to fashion a nipple and areole out of the back skin on my chest. The only symmetry I currently have is the symmetry of absolutely no sensation in my chest unless I flex my back muscles, go figure. Now I just want them to match. To sort of look and feel similar, give or take 10 years and much scarring and different surgeons. I’ve given up all semblance of control, sort of, but I love symmetry. My stylish Canadian plastic surgeon reminded me that they can only do what they can do, but he knows I will be happy. Compared to now. His version of trust me I’m a doctor. Well I do and I know I can’t control any of it, but I will be thrilled at this finally coming to rest. Bar a blood test or three. And then I can get my next tattoo. ‘You can. The end.’
Bloody hell this healing process takes fucking forever. Its been two months now since my second breast was removed. It’ll be three months when all is healed so the tissue expanding can happen to make space for an implant if I so desire. Haven’t decided yet. Have been dealing with ongoing seroma, ‘a build up of fluids in a place on the body where tissue has been removed’. I seem to have a lot of it. Two weeks ago my stylish canadian doc aspirated 150mls. And i was left with a little pouch containing nothing but a tissue expander and some lat tissue. Hmmmm. Not sure that’ll make a boob. Latissimus dorsi flap breast reconstructions are traditionally done using your own tissue and an implant to give a more natural feel and the majority of patients (amputees, survivors, thrivers? Fuck so confused by what term to use) are happier longer term than those with only implants. At this point I start to think what are you bleating about you’re alive. Survivor guilt is a thing. But never let it negate you and your fears, issues, idiosyncracies. They are valid. Ok, note to self over. Annnd I have been ‘happy’ with my existing reconstructed breast like mound thingy. Just don’t remember it taking this long to heal, but then again there has been the onslaught of chemo etc. Reckon this body is holding up the middle finger right now. Anyhoo, the continuing fluid build up means it looks like I’ve got a boob still. Bit flippity floppity but oh well. Its quite handy when you want to go to the beach. That sounds flippant but its not. I have my very dear friend to thank. I was hiding as I had been, albeit knowingly, when she bullied me into her car and out for a coffee on the beach a couple of weeks ago. The sun was shining. It was glorious. Everyone was out and proud in their cozzies and worshipping the sun. My happy place. I was feeling grumpy and scarred and flat and confused. So she took me cozzie shopping. Fuck me. Not many people who can know what I need when i don’t even know. It all felt so normal as we found “busy’ padded tops that would disguise the fact that I was mishaped and that one side was primarly empty. I needed help doing my top up and she helped me. It was all so easy. I didn’t flinch once. She made it so. It was only days later that she admitted she had found it so emotional seeing me standing there asking if this is ok, with my scarred semblace of a boob, that it took her breath away. She hid it well. And it helped me so.
So on 13 december we start expanding or not. Then we schedule phase 2 and 3. Insert implant or not. Remove implant from other breast and reinsert new one. Or not. Reconstruct nipple from bit of back skin on breast like mound filling in for my areola. Tattoo both nipples and areolea to match. Et voila. Oh ja and follow up blood tests and oncologist check up. Just to keep it real.
That’s what Kate said I was yesterday. And the funny or not so funny thing is, I was. And I am. In fact I am completely unplayable. I also always have been. A bit. It’s what makes you love or hate me. I have always ignited quickly. And often irrationally. And I can be a real bitch. But I had learnt to breathe a bit. But all this fucking around with my hormones has just sent me off the charts. It was already happening before this last recurrence due to Femara, my previous aromatase inhibitor, and my ‘mood stabilising’ meds no longer being effective. But now with all the new crap we have serious lift off. I react to everything with absolute venom and anger. There is no momentary recognition, ok this is annoying but really nothing to react to, there is just simply ape shit fucking hell hath no fury like a woman on Aromasin angry. The thing that really pisses me off though is not that I’m not given some slack for not being me. Or for being the worst version of me. Nor even that I have to humiliate myself by constantly saying, seriously guys cut me some slack here, I mean cancer. Even I’m bored by that. And the eye rolls indicate so are they. As we all are. The thing that actually pisses me off is that we are even having to be in this space. I have to be on this medication. It makes me impossible. Okay, more impossible. And I know I’m being impossible. But knowing doesn’t change a damn thing, psychobitch cares less. Then I think maybe you can stop doing what you’re doing that makes me become psychobitch even if it doesn’t seem fair. Because fuck it, none of this seems fair. But why should you. And who knows whats going to set me off. So I feel squarely fucked. I have to be on these meds. I knew the side effects were going to be beyond challenging. I never really thought they would create a chasm between me and those nearest to me. They are prescribed to give me more time before the next recurrrence and to reduce the risk of new cancer. And I like time. But if we all end up hating each other, is the time worth it. And then there’s all the other shit rattling around in my brain. Psychobitch feeds off that shit. Anyhow before you all wonder if you need to call for help, I’ve recognised I need to. I need to dump all my anger, grief, disappointment, stress, insecurity, unworthiness, uncertainty on someone. Someone who doesn’t love me and really couldn’t give a fuck what I say or do or think or believe. It won’t help me not be psychobitch, I need more meds for that. But it might make her a tad more tolerable. In the meantime, you have been warned. Psychobitch coming through.
I witnessed an outpouring of emotion in B this week that reminded me how it is so not all about me. Before you comment I really do know it’s not. But we make it about ourselves to protect everyone. And ourselves. If I’m coping or seen to be coping then they can cope too. It never ever is only about us but the one thing I know for sure, cancer, facing one’s mortality head on again and again and again, is a truly lonely reality. One that can’t be shared in its entirety. Not even with those who love you. Sometimes especially not even with those who love you. Not even with those who’ve been there and are still here. Because it’s just so bloody unique. We are. The circumstances are. Your realities are. You are. There is noone, as much as they wish to be there, with you in your head. Which for me is where the battle is won and lost. Your acceptance and willingness and determination to do battle is alone. You dig deep alone. And you hold yourself together. Because you must. Because if you start to cry, you fear you will never stop. I did what I must and do what I have to to carry on. But the depth of despair in those who can’t show you how deeply it hurts and how damaged they are at having to witness you suffer is beyond comprehension. By you not showing your vulnerability because you just can’t, doesn’t allow them to show theirs, which is just immense. To hold someone up, while helping them hold themselves up, by not sharing their real fear, so you can’t share yours is all kinds of fucked up. But all kinds of necessary. For some. Certainly for me. But sometimes the brave face we wear and force on others is so very unfair because whilst it is about us and our survival, it is about so much more. And yet I do still believe, be there in whatever form your loved one needs and when the time is right, let your guard down and show them your truth. Acceptance is a battle well and truly fought alone but within the safety of your presence one gets there a little less scarred. Pun intended.
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 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 have to admit I’m a little bored. I’m supposed to be packing and I’m sitting here researching the side effects of docetaxel and cyclophosphamide. It’s not what I’m reading that’s boring it’s actually quite interesting. Fascinating even. But nauseating. Truly nauseating for those in the know. It’s the fact that I am reading it that bores me. And that all I think and talk about right now is this insiduous, (I like that word C), fucker. I am bored at being here again. I am bored that my family are here again. Seriously if I need to be the poster child (I uses the term lightly) for anything, did it have to be this? And I don’t mean to be ungrateful, I really do get the goodness that can come from crap. And that crap happens. And what sets us apart is how we handle the crap. And that my determination to be positive (hate that word sometimes, because really what chioce do we have) and my strength to do what I must could help others. And I am so grateful for that. But I’m bored. And yes, probably mildly depressed.
I met my oncologist. She is brilliant by reputation. And I found her delightfully as insightful as she was brilliant. My brilliant insightful oncologist has unfortunately not ruled out chemotherapy. She is mindful of not overtreating nor undertreating me. So I am to be discussed and reviewed further. Love all these brilliant minds being a tad baffled by me. I think. Final decision to be made next Thursday. If you believe that you’ll believe anything. Anyway I’m not scared. It’s awful but I will do whatever I need to. And anyway I need a haircut.
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.