Saturday, December 22, 2018

That Darned and Blessed "New Normal"

 
Dear Ones,

Rest, with supervision.
I'm feeling so much better, and learning how I need to live with metastatic breast cancer, well at least how it works for me at the moment. If you are curious, my updates follow.

So so medical info - from a recent CT scan (that was relatively anxiety free) no new metastasis, and even better healing to my bones, that means that the treatment is working, the cancer has been significantly diminished in my body. From blood work, my tumor markers are 25% of what they were this spring, my circulating blood calcium levels are in normal for non-mbc people range - high means that bone is being broken down by the cancer, and my liver numbers are all good. The remaining challenges are fatigue, shortness of breath, and my immune system continues to be challenged by treatment, so my blood counts remain low and I am at a significantly higher risk for infection. That means I have landed on antibiotics a bit more than I would like, and for me, that option feels smart. When I was wracked with teeth chattering shivering with a fever under 101, yes to antibiotics.

Better than the medical info is the fact that I am getting to find my life again. The new normal looks a bit different, and that is ok, it's another transformational opportunity (she says with a whole lot of sarcasm.)

Skidmore Views
Two best parts of October were getting to Saratoga Springs to see daughter Sarah and to Florida to see mom Carol and be a part of step-dad Dick's Memorial Service.  Sarah and I shared a small Airbnb near Skidmore for a few days, I got to take her out for good food and to Target... many times. Getting to see Sarah, enjoy her wit, insight, and interests was a treasure. It's funny, I do miss her, yet she has landed so soundly, that I am not worried, that takes away so much angst. I love downtown Saratoga, I got a small tour of important places at school, we had crepes and ice cream, slept late and enjoyed the distinctly non-autumnal scenery.

My heart was full, and then I joined Sarah at her riding lesson. This is one part of her/our life that I have really missed. The barn and the time together, watching her lessons, being proud even though I really don't know enough and think she is an amazing rider as long as she is on the horse's back. She remained mounted for her full lesson, on a big goof of a chestnut warmblood, of course he is a chestnut! It was a special bonus to a wonderful visit.
 

The memorial for Dick was beautiful and full of love. Ellen Sloan, rector of St. Michaels gave a beautiful homily capturing Dick's personality and heart so well. Carol caught me by surprise minutes before the service when she told me that Isaiah 55:6-11 which I was reading for the first lesson was what she read at my father Mike's funeral in 1978, can't say I remembered that! Carol and Dick chose to move to Sanibel, and then Ft. Myers in the early 90's so that they could fully become members of the community. They found their people, they created a wonderful life, with connections and value, service, and faith. Dick's memorial was a wonderful vignette of this life.


Sarah and one of the many pies
Thanksgiving was a low key holiday, Sarah was home, we made a lot of pie and I managed to come down with Bronchitis right as she was recovering. More antibiotics and coughing for a month now. And hey, I'm ok with the trade off of suppressed immune function and health.

My sister Polly and brother John have been working so hard getting Carol downsized, packed and ready for her move to assisted living at Shell Point. I wasn't able to help much, another frustrating new normal. Polly and John busted it out and maintained good humor and I sent a lot of goofy texts and listened to the challenges. I can be of support. 
Amelia and Carol at St. Michael's in October

The last few weeks have gone so quickly. Carol moved to assisted living at Shell Point Village and that wasn't as smooth as any of us would have liked. In the midst of Bronchitis, with no voice I was advocating, soothing, and problem solving. What I really want to know is when I will get paid for all the staff training I seem to provide for so many organizations? Because I will call you out, and I will also engage in the conversation about how to do it better. Carol is settling in better and getting the care she needs, I am hopeful and prayerful that this will all be good in the long run. Her 83rd birthday is Christmas Eve.

Last weekend Sarah's suitcase went on to Sacramento when she got off at BWI, she's getting pretty good at travel adventures. This week, she and Becky were up in NYC and Sarah managed to get a cab, in midtown, at rush hour, in the rain. That's no small feat, I'm dang proud of my girl. Unfortunately their ride home involved a lot of delays and bus changes, they were troupers with just a wiff of bus bathroom. There's a metaphor here, I'm not going to go looking too hard for it though.

I love Christmas, decorating, making gifts, cooking, and connecting with family and friends. Mostly I'm lowering my expectations some more and being gentle. The tree is up, its naked, and there are no outdoor decorations. Shopping is done, low key plans are in place. I know its ok, and these edges do make me sad. I'm praying for some productive sewing this weekend, if not like last year when I made the Fab 5 and all the Fivelings hats after designing custom fabric, maybe a small quilt and valences for the living room?

Cancer as a chronic illness, mortality, what matters, what I love, all of this is present in my moments. This is Christmas, and I feel the sadness and don't always need to reframe that to gratitude. They can coexist, along with anger, frustration, and awe.

I am glad to be here and to be able to write about life. I'm not done yet, not by far.

With love,
~Amelia



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