Everything and Nothing.

MandaMooMandaMoo Member Posts: 500
edited September 2016 in Metastatic breast cancer

I last spoke about loss.  Losing friends is difficult.  Losing them to a disease that you have yourself is difficult in a different way - there isn't the consolation of "time healing" - instead there is ticking. The ticking is always there - some days excrutiatingly loud and thumping, others just soft enough to intrude the quiet moments but ever present - tick, tick, tick, tick...

I've been reading the Tibetan book of Living and Dying - quite a read!  Difficult, challenging and full of wisdom and inspiration.  Awareness of my inevitable death certainly does inform my life - I rebound from bad news so much quicker, I look at conflict completely differently than I did prior to this "realisation" of my death. I am grateful for this.  It means that most days I am a happy person who doesnt dwell on my impending death.  Nor do a dwell on the future or the past. 

Oh I have my moments - I would be dishonest to say I don't sit and calculate how long do I have to live now to see my daughter finish school or my son start high school? Then I laugh at the absurdity of even imagining it could happen but then there is this louder voice that says - why the hell not?  I look at my son as he loses his baby teeth and imagine his face as a man - I tear up thinking of it right now - will he still have his ginger/auburn hair, will he be tall and strapping, what will his jaw be like? It's like I see him morph in front of my eyes like a Michael Jackson video but it's all in my head. I watch my daughters blossom into young women - both facing the uncertainty of my illness head on - I feel so much sorrow at what is taken from them before I am gone.  

Today I did one of those Google searches you shouldn't do when you have metastatic cancer - "metastatic breast cancer healing"...  Well, the first 4-5 pages highlighted the THERE IS NO CURE FOR METASTATIC BC (really? 2 years in and I think I am aware of that)  Why did I do it?  I've mentally been in a really good place.  Was I hoping for a new miracle story? I would have to be up there with the best informed cancer patients on the planet.  My Oncologist and I talk HSP90, monoclonal antibodies, tirosine kinase inhibitors, Reversing resistance, immunology. phase 1 and 2 trials like we learned about it at kindergarten.  I didn't want to read about the mircale in China or Mexico - I know it has worked for some, it intuitively doesn't sit with me - perhaps I have read too much.  I wanted to hear an old fashioned, the Dr said there was no hope but here I am 10 years on, no cancer.  I know they happen, I've met them, I am friends with some of them but I know how different their stories are to mine.  Usually they respond to treatment - really well - I haven't ever.

You see, I just can't accept the "THERE IS NO CURE" line. I can't even accept the "CHRONIC DISEASE" line (I read a good article on that one stating it's not a chronic disease like diabetes, it will still take your life, most likely within 10 years, most within 5 and a hell of a lot before that).

I am the champion of don't give the cancer power, don't give statistics power but there niggling in the back of my head is I am now over the median life expectancy - 2 years with mets.  2 years with this eating me away and I still feel pretty good but know all too well how it ends for 99% and how quickly that can happen.  

So reality - I have had in the past 2 1/2 years 7 different courses of chemotherapy.  Currently, I have had a remarkably positive response to my latest combination (yippee I hear you cheer but wait...) in about 70% of the disease... I am now also "growing" a resistant strain of the disease - in my lungs and in my lymph nodes (currently neck and hilar region) - first we thought - maybe it's viral or some other condition, so we did a biopsy - nope - more of the same. What does this mean?  There are now two clones of cancer growing.  I've felt remarkably calm about it all.  I refuse the give the cancer any intelligence here.  I am intent on being well.  It is great news that a large part of my diease has responded to the current therapy so we continue for now but we do have to address the disease that isn't responding.  Therein lies the problem.  My oncologist is thinking outside the square (we are already well outside it with drug company support) but the next step is even potentially more risky and possibly costly - what do I have to lose? everything and nothing.

Comments

  • adeanadean Member Posts: 1,040
    edited March 2015
    I admire your honesty about the fact of mortality, I appreciate your frankness as I think you say what people fear to say, it's true you have nothing and everything to loose but you give it the best damn shot young lady and when you know you've done that you will know you've done everything. Love and hugs adean
  • CarmelSCarmelS CanberraMember Posts: 247
    edited March 2015

    Amanda, all I can add to things others have written over the last couple of years, is that I hope they continue to find combinations that keep you well (??) for longer & longer & longer .......both for yourself & your hubby & those gorgeous little children you have at your side. 

    All the best to all of you as you continue on.

    Carmel

  • Leonie MooreLeonie Moore Member Posts: 1,540
    edited March 2015

    If there is something to be found, you are definately the right person for the job Amanda.  You continue to AMAZE me and also Scare the Living Daylights out of me with all of your "persistence" and knowledge.   I am no where near your "status" of treatment.  You are a trail blaze leader for those of us following down the same track.  The path you are showing us is made of solid ground and gives confidence that when falls happen there will always be something to guide us to the next stage.  You are one special woman whom I am pleased to be aquainted with. XLeonie 

  • Simone SSimone S Member Posts: 12
    edited March 2015

    Amanda...your posts were the first ones I read when I joined BCNA after my diagnosis last year - I think I searched HER 2 postive and impacts on family. Your honesty  and carefully considered words have had a significant impact on me and I appreciate that you spend some of your precious time talking to us. I have found your posts to be sad, confronting, educational, inspiring and most of all filled with love for your family and friends.  Thank you for giving us an insight into what it is like to have ABC.  Simone

     

  • Simone SSimone S Member Posts: 12
    edited March 2015

    Amanda...your posts were the first ones I read when I joined BCNA after my diagnosis last year - I think I searched HER 2 postive and impacts on family. Your honesty  and carefully considered words have had a significant impact on me and I appreciate that you spend some of your precious time talking to us. I have found your posts to be sad, confronting, educational, inspiring and most of all filled with love for your family and friends.  Thank you for giving us an insight into what it is like to have ABC.  Simone

     

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