Posts Tagged ‘metastatic breast cancer’

Those of you that have seen the Mary Poppins Returns movie might recognize this as one of the songs that Mary sings to the Banks’ children. Their mother has died and they are mourning her touch and love for them.

The song helps them to understand that their mother is not lost to them – she is in the stars, in the moon and most of all inside of them. And I am sure the parallel to my situation is not lost on anybody reading this.

I sobbed in the movie theater, I sobbed in the car on the way home, I sobbed when I told Steve about it, I sobbed when I told Victoria (she got teary too), I sobbed in bed last night and I am getting teary writing about this here.

This song feels like it pulls out my heart strings and leaves them dangling in the wind, raw and vulnerable, like laundry blowing on the washing line on a chilly, windy day.

But there is not much better than a good sob although it can feel exhausting and so painful in the moment. Today I feel better emotionally then I have in weeks. As I have written before, grief and the acknowledgement of it are so important to me in my journey. Giving it the space to come forth when it needs to and to honor and witness it are critical. Otherwise it sits inside me like a ‘cancer’, invading my other emotions, leading to depression, anxiety and a sort of passiveness/numbness about my whole ‘thing’.

The flood gates opened when they needed to and now I can again acknowledge the beauty in my situation (I get to be a star!!!) along with the pain.

Love to all,

Amanda xxx

P.S. Coincidentally, a friend posted on FB today an article by Thich Nhat Hanh that follows the same vein about our loved ones living inside us. Here is the link to the article if you want to check it out. https://www.goodreads.com/quotes/1195156-the-day-my-mother-died-i-wrote-in-my-journal

P.P.S. Even though I sobbed, I loved, loved, loved the movie!! Go see it 🙂

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Mixed is the word to describe them. In some places the bone tumors have shrunk but in other places, primarily my hips and pelvis area, the tumors have grown. So all change again, this time to an IV chemotherapy drug that I have to ‘take’ every three weeks. For those medical minded peeps, it’s a platinum based drug that is specifically used for those with BRCA mutations. The best news is that apparently I won’t lose my hair, or only bits of it (hopefully little bits from all over, not just bits in one place!!).

I am doing surprisingly ok with the news. I think in my heart I knew this would be the result given the pain I’ve been getting in my ‘middle regions’. I spent all day yesterday lounging around, trying the news on for size and deciding how it fit me and me it. Still undecided but am definitely not living in my head, focusing on the worst today. I’ve come to terms with the journey to some extent even though it’s very jarring that no drugs seem to work for longer than three months, so far.

So that, my friends, is the lastest skinny – more to come.

Love to all,

Amanda xxxx

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Hope, I’ve discovered, is a funny old thing. Everyone believes I should be hopeful and to not be, would certainly leave me sitting in a dark, lonely space. But hope for what exactly??

I have learned that having hope for a specific outcome can cause anxiety and big emotional swings. I hope for good PET scan results but if those don’t come, then is my hope lost?? Hope that the next drug will work? Hope that I won’t lose my hair, or that the cancer hasn’t moved to my liver yet?? Hope in specific results, for me, is a roller coaster. Down I fly, wheeee, great scan results, hands waving in the air, feeling light and free. Up I trudge when the results are not good, trying to rediscover hope somewhere on the slog up the hill, just to wait for the next scan in three or four months, just to repeat the cycle.

So I mostly hope for other things now that are macro, not so micro. I hope that no matter what comes my way, I will be able to feel into the full depths of my emotions. I hope that I can continue to maintain some form of body strength and health this coming year so I can travel where I want. I hope that I will continue to wake up each morning and actively feel my breath in my lungs. And most of all, I hope that I can stay fully present to every precious moment of my life, wonderful or not, as that really is what it’s all about (along with the hokey pokey!!).

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Medical Update

My intent with restarting this blog is not to really focus on my medical updates, but to bring you along on my emotional and spiritual journey. They are however, closely intertwined and as I am sure you can imagine, there’s a lot going on in my little space of this universe. The journey is not just about fatigue and achy bones, but a lot of soul searching, a lot of trying to figure out how to live the life I have, not the one I thought I’d have, or often wish I had. And to find joy and happiness along the way.

But I thought I’d start us back up again with a level setting of the playing field so that you all know the state of affairs. In April 2017, after being admitted to the hospital for severe anemia and suffering through numerous tests, the results plus a biopsy, showed that my breast cancer has metastasized to my bones. Not just one bone, but many and as the cancer chomps away at the bones, it causes them to become ‘holy’ so to speak. The cancer tumors also take up space in the bone marrow, thus the anemia.

This is not a cancer that can be cured per se as my bones cannot be removed (!), but the hope is that drugs either bring remission or a reversal of progression. So far I have been on one drug that did that, but after 5 months, the cancer morphed and returned. Since April 2017, I have been on 4 or 5 different drugs that haven’t done too much, unfortunately.

All my drugs so far have been oral therapy so no hair loss. My current drug, Xeloda, and I have been buddies for 4 months and I have my first PET scan whilst on it on Friday to see how it’s doing. I have my fingers crossed of course, but my pelvis and hip area have been feeling very sore and achy which makes me nervous. I will get the results the following Thursday afternoon.

The worst time for me by far is PET scan time and I can feel the tension increasing in me as I get closer. I live my life in 4 month increments, waiting to see what the next results will bring. If the results are good, I can smile and go home joyful for this cycle. If not, my drugs will be changed and I will go home sad and fearful, spending time grieving the loss of hope for this medication. And then once again my soul will pick me up and hold me with love and wisdom.

Love to all who are reading this again and fingers crossed for the scan and results.

Amanda xxx

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