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.
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.
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.
I really have grown. A growing up I would have chosen differently but hey. Life does its thing when we are asleep. I’m just grateful I woke up. I cut all my hair off on Saturday. Well 30cms off so I could donate it to kids for cancer. It had to be on Saturday because B needed to be there and I had to do it before chemo starts. And B is away this week. So I had to do it quickly and without really thinking too long about it. And it didn’t bother me. Well apart from looking far too mature, and perhaps there is a message in there somewhere. First time round it bothered me a lot. My hair was my security. It made me me. But I did learn I was so much more than my hair. It was just something I could control. This time I chose to cut it off with knowledge and no fear. And still, those scissors were like a shard piercing my this isn’t really happening again protective shell. Just for a moment, I hated reality staring back at me. But I’m ready for this. And I need you to be too please. I’m getting far too many head tilts lately. All my hair on my body will fall out. I am not fearful. Yes I have heard about cold caps. Yes I am glad, really I am, that your mother’s aunt’s second cousin had chemo and kept all her hair. Unfortunately you know too little. Or fortunately. Not all chemotherapy is the same. There are different regimens used depending on you, your type of cancer, your grade, your stage, your history. How you respond to treatment is also so very personal and enterwined in all of the above and who you are. There are many different types of breast cancers too, and treatment depends not only on stage and type but on whether it’s hormone receptive or not, BRACA postive or not, HER2 positive or not, invasive or not, advanced or not blah blah blah. Mine is advanced. And invasive. And hormone positive. I think you get the gist. I am not fearul of losing my hair. All my energy will be directed at healing and saving my life not at saving a few strands of hair. I vomit at the thought of all that fear. I truly feel so light and empowered right now, which is exactly where I need to be. And I do love the care behind your suggestions, but if there is none, please fuck off.
Thursday I start. Every 21 days. 4 cycles. Could be worse.
So we all know life sucks from time to time. And we all know to be grateful for the non sucky moments because they too will pass. As will the sucky ones. I keep telling myself this as I plan my next months. Yup I am having chemo. Again. A different chemo to the one I had before but chemo. And yes I will lose my hair, and potentially my nails, and my eyebrows and eyelashes and get mouth ulcers and vomit and rashes and nausea and extreme fatigue and neuropathy and generally hate the world. And it all fucking sucks. But I am resilient. I am a warrior woman. And I knew it was coming. I knew it the minute I read that awful word invasive on my pathology report. I knew that a systemic response would be needed. Its the medical consensus of many learned oncologists and pathologists and surgeons and who am I to argue? Anyway I know too much. I know the consequence of winning that argument but losing in the long run. And that’s not an option. Chemo sucks but having cancer sucks a whole lot more. So I am at peace with relinquishing control (okay a bit) and being guided by those reknowned for being cautious, sensible and non aggressive in their approach. And deep deep down I know I’ll sleep better knowing we are doing what we can.
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 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.
4 January. I am grateful for my oncologist. And that in my desire to find the best care I came full circle to the man who scared me off at first. I am grateful for his honesty, his integrity, his purpose and his lovely sense of humour. I am reminded today as I sit in front of him of the laughter he brought in to the chemo ward, despite the hush that was always present. I loved that. He made me laugh. He brought hope.
I missed it. 3 January was my 5 years. I am officially 5 years cancer free. I was officially cancer free for 5 years, 2 days ago. The day I have held as my goal without really meaning to, yet yes counting and being subtly aware of. And I missed it. It was a damn important day for me, a day I wanted to mark and rejoice and give thanks and smile and be still and light a lantern and gently weep, looking up into B’s eyes with wonder and love at all we have achieved. Ohmigod, I think I’m going to vomit. And am seriously considering romance novels as my next outlet. But, how simply fabulous that I missed it. I love that. Even though I made B squirm cos he missed it too. I haven’t told him I had too. Well, I have now. Seriously though. Life is great, life is every day, every little thing every day is as important as everything else, nothing is more important, it’s just the importance we attach to things that makes them so. I am here, I am loved and I love. With all my heart and I am thankful and grateful for every day. And not especially for 3 January. I have grown, I am brave and I look forward to every day with courage and excitement and gratitude. As must we all.