So I went and saw my oncologist last week for another lets see how things are going visit. I’m liking her a tad less every visit. It’s that emotionally unavailable bit. And I get it. But I just need her to see me. Me. Not a cancer patient. Anyhooo I am trundling along, my bloodwork was good, my fatigue is lessening, I’m starting to make peace with and accept the side effects of the Aromasin. It just becomes your new normal. I have changed my mood stabilising meds, see what I did there, and psychobitch seems to be making fewer appearances, although my family might disagree. I am delaying decisions re future treatment until next year. 2016 has done enough. I am finally getting at fifty that life is a series of commas. There are no full stops. And especially with cancer. It is not over. It never was over. I will never be able to say with certainty I am cancer free. So what am I you ask? I am officially in remission, which is defined as ‘a temporary diminution of the severity of disease or pain’. Yay me. No seriously. It’s as good as it gets. There is no evidence of disease. For now. I am feeling more like me than I have in a very long time, psychobitch and my inabilty to remember anything vaguely important aside. But there is the reality of the ‘for now’. And all that does is remind me, and you I fucking hope, that it is all bloody temporary, the good and the bad. It will all pass. So celebrate every little good and seek it out, see it, and deal with the bad with as much grace and dignity as you can muster, because it is just a comma. Not a period. Period.
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.
I thought I’d let things fall where they needed to this past month or so. Heeding the advice of many that whilst things feel like they’re falling apart they’re not. They’re just falling into something different. And ain’t that the truth. Bugger is I was quite happy with the before. But growth is something I welcome and change something I’ve learnt to. And we do grow and even transform when we have huge obstacles to overcome. Into something new. But I just can’t quite settle into the new me yet so I’m still letting things fall in to place. Or further apart. And then hopefully back together again. All I do know is, I am not who I was. But dammit, this new me needs to get her shit together soon. I’m feeling far more vulnerable now than when I was kicking cancer’s ass. I was focussed. I was determined. I was a warrior. I had a purpose. I had an army. I was positive. I was not needy. I was not uncertain. I am not fearful, nor am I negative. And I am so very grateful. But just a little hesistant. A little uncomfortable. A little do I just carry on like nothing happened. Like everything is not different. Forever. Do I live every day like its my last. Do I bother. Do I doubt it all. Do I celebrate it all. Do I just be. Do I love the different me that looks back at me. Obviously I know the answers and hopefully I’ll do exactly that once things all fall into place. And they will. And then they won’t. But universe, no more growing needed. I’m all grown up now.
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.