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Medical Updates

Well, the first piece of news is that my eldest daughter, Victoria, upon turning 21 last October, decided that she wanted to get tested for the BRCA gene to see if she inherited it from me. There is a 50% chance that she could do so. We went to Dana Farber mid-December and decided to do the most complete panel of genetic testing available which goes far beyond the BRCA gene. Yesterday we heard that she has no gene mutation that could give her a greater risk of cancer (not just breast) than a ‘normal’ person. I can’t tell you how relieved I am and this has made my year. I feel that this news is bigger than me. It transcends my particular situation and allows for her to experience her life without this weight on her shoulders, without the weight of wondering about having a prophylactic mastectomy, what to do about having babies, etc. It makes my heart smile, biggly!

As for me, January was a tough, tough month. I had my new IV Chemo, was diagnosed with the flu and then anemia. No wonder my poor ass was a draggin’. Had a good time at Universal and then with family in Clearwater but just felt achy and exhausted the whole time. I was the happiest person at the hospital when they told me I was anemic as I knew the blood transfusion would perk me right up and it has. So I had my second round of IV Chemo and the blood transfusion on Thursday and was at the hospital for 9 hours!! Had a little mishap with blood pint number two when I suddenly had a reaction and everyone came running. Two very puffy eyes and a cough. The picture Steve took and which I am posting here is a little unfortunate as it looks like I am in some intimate relationship with the plastic pipe in my mouth, which for enquiring minds is actually a sophisticated nebulizer.

So I say, here’s to a better February.

Love to all,

Amanda


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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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Yesterday was my first IV Chemo treatment on the Cisplatin. Before the treatment, I met with the oncologist nurse practitioner, who I love. She gave me more details on my PET scan and like boobs, butts, stomach and those baggy things that hang down from the tops of arms as you get older (where do those suddenly appear from??), it seems that my cancer has done the same!!! The PET scan indicated no cancer this time in my neck, shoulders and the piece of my skull they scan. But it’s all collecting in my pelvis, hips, ilium and femurs. Oh joy!! This is causing pressure on my nerves thus the leg aches and pain. In order to combat this, she has given me Oxycodon.

Not only has she given it to me, I have taken it. I can hear a collective gasp from many of you out there!!! I decided that the pain was impacting my quality of life, stopping me from doing things I wanted to do and bringing me down, man. And it works, quite definitively. That’s not all – I now rattle as I walk, so you can hear me coming. The number of drugs to combat the extreme nausea that comes with cisplatin makes me feel like a walking pharmacy. And naturally, all these things cause constipation so then another load of things for that. Sigh 😦

But whether it’s my new BFF the Oxy, the steroids which I only take for three days but give me this strange to me sensation of having energy (!), or something else, I am feeling damn good. I recall about 20 years ago deciding that I wanted to feel free and liberated on the inside no matter what was happening in my external world. Not the way I had expected to get there but indeed today I feel it. I am learning to get out of my brain as much as I can and into my heart and soul. The wisdom that resides in these places is so deep and meaningful and the head can be a dangerous place as I am sure many of you appreciate.

Talking of heading South, am off to FL from 1/25 to 2/5. It’s just a Steve and me trip. We are going to Universal for a day as the bucket list includes Harry Potter World, then off to Clearwater to spend time with Steve’s parents and Mike and Ellen (Steve’s wonderful brother and wife) in the warm sun. Really looking forward to it and then off to Santa Fe at the beginning of March for my spiritual retreat. How did I ever have time to work?!?!

And finally, thank you for all the wonderful comments you post. I love feeling the love – makes me all warm and gooey on the inside like the best tasting warm chocolate chip cookies.

Amanda xx

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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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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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Hi All,

I have been asked three or four times in the last week if I intend to start blogging again.  I had been considering doing so and I feel that I have a lot of laughter, grief, humor and pain to share with you.

I’d love to know if the old links still work.  So, is there anybody out there???  Wanna continue the journey together?

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I am SO excited. I feel like a kid on Christmas morning. My eldest daughter, Victoria, has agreed to a college visit palooza during April school vacation week. It’s not that she wants to go that has my heart a-singing, but the fact that she and I will be spending a whole week together doing so. She has her heart set on art school, so we are visiting Mass Art and SMFA in Boston, RISD in Rhode Island and NYU, Pratt and Parsons in New York. All that time in the car together – just yum, yum, yummy. And maybe she’ll even ask me my opinion on the colleges – even yummier because I always have a point of view and just love to share!

It’s such an interesting journey being a parent. When my girls were young, I sometimes hid in the bathroom to get some peace and quiet from the constant ‘Mom, look at me, look at me’ (Lisa, thinking of you!) and the ‘why’ to everything. And then the middle school and early high school years descend when they really don’t want to spend time with me, their friends being so much more important. Advice can be greeted with eye rolls and comments about me not understanding, as if my 54 years on this earth count for little to nothing. God only knows what they are learning from each other, thinking at 14 they have all the answers.

And then the most beautiful thing happens, they start to come back. At least that has been my experience with my eldest, Victoria. And now I can’t get enough of being with her. Beyond school, she works at Michael’s, takes art lessons, has a boyfriend, drives herself everywhere and is the independent person I wanted her to be. But spending uninterrupted time together is just so precious. I am watching this girl grow into a woman and I am just so proud of her and I feel so blessed that she is in my life. So given all that, we’ll probably fight and bicker the whole time, but you know what, I am determined to enjoy that, too!

And what of my return to work? I have very happily enjoyed my first three weeks. It’s been great to reconnect with everyone and the work I am doing is fun (am I allowed to say that about work?) and gets my mental juices going. I have felt very supported by my company and my new boss is just the most wonderful person I have ever, ever worked for (are you noting this, John for my mid-year review?!?!?!). Going to four days a week after Easter, adding Monday from home.

I am starting to feel quite excited that Spring is inevitable and yesterday I put on my new black with white polka dot wellies and headed out in to the garden to see what might be happening. Not much, to be truthful but sooner or later something has to grow!

Love to all,
Amanda

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